A little hope from Oklahoma.....

Bunco For A CURE....

2012-02-16T07:25:00.001-08:00

If anyone has any items they would like to donate or knows of a business that would like to donate items for our Bunco for A Cure on April 20, please let me know.

If you own a home based business, we would love some of your items donated! We are having the event at Cedar Ridge in Broken Arrow and we can get you tax letters for any donations.
We are in need of themed baskets for raffles, electronics (ipods, ipads, itunes cards, TV's, Blue Ray etc), gift cards, jewelry, purses, desserts....anything we could auction off or sell raffle tickets for. We will be selling tickets to the Bunco and then having dessert and coffee, along with raffles the night of.

100% of the profits are going to be split between the Cystic Fibrosis Foundation (Team Kaleb) and Fanconi Anemia Foundation. My friend Mary Jo and I go to church together and her son has the genetic disease Fanconi Anemia. May is the CF walk and Fanconi Anemia month for fundraising, so this event is perfect timing!

Please contact me on here or ispikem@gmail.com if you have any items you would like to donate or know of any connections!
I will post when tickets go on sale!

~Kristi

Dr. Carey Returns....

2012-02-14T07:12:00.000-08:00

We saw Dr. Carey last night at our appointment. We talked about several things that occurred over the last month and his new diagnosis of MAC lung disease. Since he has only had one culture come back positive so far, we will do a high resolution CT scan (waiting to hear when the appointment is) to see if there are any nodules of "tree bud formations" in his lungs. With one positive culture and obvious signs of damage in his lungs, we will continue to treat with antibiotics for about 2 years. If his lungs do not appear damaged and the cultures from the last few months (after November's positive culture) do not come back positive, then we will suspend treatment until a positive culture shows up. The medication has too many side effects and is so hard on Kaleb's body that we will not treat unless absolutely necessary.

I also spoke with Dr. Carey about the "2 week antibiotic" protocol. He said that it really is case by case and that 2 weeks is recommended but you really have to base it on the patients clinical response (symptoms) and each patient individually. How long Kaleb stays healthy this time after just 2 weeks of antibiotics will be a good indicator for us. Plus, we have to take into account what is going on at the time and what his body is fighting. If his resistant pseudo is flaring up, or his aspergillus, or this MAC, then we might have to treat it longer or from a different approach. Nothing is black and white with CF, I have learned.

Kaleb's PFT's were back to his new baseline (in the 60's) yesterday where he blew between 65% and 69%. I am grateful for the numbers going up from the 40's when he was sick and in the hospital.

I am thankful for Dr. Lee and Dr. Carey and all they do to keep up on the latest research and meds for our CF kids. CF is a complicated and unpredictable disease and there are many opinions out there on how and when you should do things. I have faith in both of them that they are doing what they see is best for our son. I trust them and that.

After all this hoopla has occurred and we have seen some progression in CF for Kaleb, I have been forced to check my emotions and my attitude regarding CF. It is really easy to get discouraged and down. It is easy to allow this disease and all its complications to weigh you down and force a negative perspective upon you. I have spent a lot of time in prayer lately asking God for a renewed vision of our future, of Kaleb's future. I have prayed for peace upon our family and our processing of each step in our journey. I have prayed against anxiety in Kaleb and I as we have been battling this. I have prayed for time for our family to get to spend together so that we may enjoy each day we get. I have prayed for Hannah and her realization as she navigates what it means to be a sibling to a brother with CF and that all that goes on in her life will bring her joy instead of overwhelming sadness and burden. I have prayed for the relationship between David and I to be more than just parenting a CF child and that when difficulties come along, we can only get stronger...together.

The Lord has been reminding me of all the many parts of who HE is. All His names and what they mean. A God who heals and protects. A God of peace and love. A God who goes before us and carries us through when we are unable to walk on our own. He has reminded me that although our lives may change, although our circumstances may change, HE does not.
That gives me peace.

"And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus." -Philippians 4:7

"Let the peace of Christ rule in your hearts, since as members of one body you were called to peace. And be thankful....And whatever you do, whether in word or deed, do it all in the name of of the Lord Jesus, giving thanks to God the Father through him." -Colossians 3:15,17

Sunshine in the Rain....

2012-02-09T06:33:00.000-08:00

With all this craziness going on with Kaleb's new diagnosis, I thought I would share some good stuff.
I was able to track down all of our fundraising totals for every year we have raised money for the CFF (12 years) except one year when we were in California. But, I have a good idea how much we raised that year based on our average.
So far, since 2001 we have raised about $75,000 for CF. That includes our total so far this year of $7,935.14. The most we have ever raised was in 2004 in California when we raised $12, 835.00.
Our AVERAGE is almost $6,000 a year and we have already passed that this year! I am so excited about our new connections and support regarding raising money. We are seeing so much success and that makes us feel better about this darn disease!!

Don't forget we are selling the purple singed beauty flower clips until May for $5 with $4 from each sale going to CF. Let me know how many you want (I have some pre-made) and I will ship or get them to you.

Hannah is still collecting coins and doing AWESOME!! Bring bags of coins to us and she will add it to her collection!

The TUPPERWARE party closes tomorrow and we are doing good! I would like to see a little more come from this show and they have some cool stuff! Please check out this link and look to see if you would like anything. EVERY little bit helps. Team Kaleb and CF gets 40%!

http://order.tupperware.com/pls/htprod_www/!twx$eparty_ctl.p_guest_welcome?pv_eparty=79bafdf35f52e51

order.tupperware.com

I wanted to THANK Beth Carr and Music to Grow By for their $450 donation to TEAM KALEB last week from the spring registrations.

We are getting closer to our goal! You can donate anytime at this link or participate in any of the fundraisers we have been having from now until May.

http://www.cff.org/Great_Strides/teamkaleb

Don't forget we will be having BUNCO in April, a Scentsy online fundraiser coming in the next month or so, $ from the sales of singed beauties, Coins for a Cure, Tupperware until TOMORROW, donations by clicking on the link above, more donations from Music to Grow By off of more spring registrations for Kindermusic, My cousin in NC is getting a team together from her work (Starbucks) to walk in NC and raise money, Team Kaleb t-shirt sales, $ from the TPS fundraiser running in March.....I am sure there is something I am forgetting!!

You are always welcome to raise money however you want with any creative ideas or just collecting funds or passing on our link for donations. Just cut and paste!! If you collect money or change, just bring it to me and I will turn it in to our local chapter so TEAM KALEB gets credit. If you have a business that donates or does matching, let me know and I will get the tax id # for the CFF and the info to get that donation! All checks are to CFF and all online donations through that link are secure and go to TEAM KALEB!!

Thank you!
~Kristi

Kaleb update...A New Journey....A New Diagnosis.

2012-02-08T06:34:00.000-08:00

Kaleb has been diagnosed with Mycobacteria/Mycobacterium Avium Complex or MAC.

Yesterday, at the end of our appointment, the doctor was going through his results and labs and found a report from his sputum culture in November. Apparently, it takes 8-12 weeks for a final report to come back regarding some fungus and some forms of bacteria. MAC being one of them. This report from November shows he is growing MAC in his lungs.

I had never heard of this before yesterday. Since then, I have been getting little bits of info off the internet (journal articles) and info from a few people in the CF community who actually have it.

We are in the infant stages of understanding. I am hoping after next Tuesday's appointment with Kaleb's specialist Dr. C, we will have a better understanding of what this means and our long term treatment plan.

Here is what we know so far. Again, just learning about this so I may come back and correct or explain some of this later.

This is an atypical bacteria.
This is in the same family as tuberculosis but not TB.
TB is spread person to person and MAC is not, although we were told to stay away from immuno suppressed and chemo patients. Of course, we must stay away from other CF'ers.
They have NO idea how you get it.
It can be found in soil, water, animals, the environment.
Those are risk are AIDS/HIV patients, COPD, previous TB, CF, immune-suppressed
It is VERY rare, even amongst CF patients
It is a Non-Tuberculous Mycobacteria (NTM)
It is an insidious infection
It is referred to as MAC lung disease
It contributes to deterioration of pulmonary function
It increases chronic cough
The treatment (from what I understand) is 3 oral antibiotics for 12-18 months and you must have 12 months of CLEAN cultures before they say you are "cured" of it.
These antibiotics (from what I have read) can have side effects on the sight, hearing, kidney's, and liver so you must have monthly blood tests to make sure his organs and other things are ok.
This is very hard to get rid of.
It is a resistant bacteria which is why the meds are taken for so long and there are 3 of them. I have heard from another patient that there are other meds you can take if you have bad side effects or cannot tolerate them. When I get the names of these 3 we will start on, I will post them.
I am also going to ask K's doc about getting a CT Scan (mentioned in the articles) and a bronchoscopy (mentioned in articles) to see how much of this has taken root in his lungs for us to understand how wide spread this is. I am interested to see if it is deep in his lungs or near the top and I would like the doc to get a better view of his lungs and the scarring and streaking as this bacteria causes permanent damage.

The doctor said this would explain his weight loss, drop in PFT's, increased cough.

We are going to get the opinions of K's doc and the CF Foundation on contact protocol. We will find out if we are allowed or should be at the walk. The last thing we want to do is unnecessarily expose other CF patients. Especially since this is so hard to get rid of.

I will update more when I know. Right now, please pray. Very overwhelmed but at the same time, I know we can handle this, I just hate we have to. We have not talked to Kaleb about this. When his meds come in, we will tell him that he has more junk in his lungs that is hard to get rid of so he will have some new meds to take. Please keep that in mind if you see him or talk to him. To me, this is just another obstacle in our journey with CF. He is now dealing with MAC, 2 different resistant colonized forms of pseudo, and aspergillus. All of those are nasty, all of those stick around, all of those are stubborn, and all cause permanent lung damage and drop in lung function.

Thank you for your prayers. I welcome encouragement, prayers, support and in the CF community, I welcome advice and and info regarding MAC.

~Kristi

Team Kaleb Total

2012-02-04T14:15:00.000-08:00

Just wanted to share that we are totally rocking this raising money thing for TEAM KALEB!!
Our total as of today is $7,935.14 and that does not include any of Hannah's Coins for a Cure!!

We are going to blow our $10,000 goal out of the water and I am soooo excited! This is our most successful year so far raising funds.

Hannah is still collecting coins until May, so if you have any, bring them to us or we can meet you to get them. People have also been collecting coins, cashing them in, and then mailing Hannah checks. She is saving all this money in her coin total!

Tupperware is open until February 10, so if you want to order go ahead and click on this link! It isn't the whole line that is on sale to give us 40% but they still have TONS of cool stuff.

http://order.tupperware.com/pls/htprod_www/!twx$eparty_ctl.p_guest_welcome?pv_eparty=79bafdf35f52e51

order.tupperware.com

We get 40% and it will ship right away, you don't have to wait until the close of the show. I already got the stuff I ordered!

Great job guys and thank you for your support!!

Soapbox.

2012-02-02T09:08:00.000-08:00

I don't know how to explain this or if it will make sense. I don't want to make anyone mad or seem pessimistic. I know people are genuinely excited when they hear things about CF and on the news but today I am so frustrated.

Obviously when CF is in the media we hear about it. Our friends and family will talk to us about it and ask us what we have seen. I like that people run it by us to make sure it is accurate and ask us what we think.

I am very disappointed in some of the misinformation out there. I do understand that information gets misconstrued and misreported. I get that, we are all human. A local news station (Ch. 6) made a huge boo-boo in the last day or so. They used words in their reporting that caused a lot of frustration and caused those of us in the CF community to have to do a lot of explaining to our friends and family and loved ones that had their hopes up for us.

In their articles, on air, and mobile site they used the word "CURE". Now, I know that word is being thrown around, it is hard to explain to the NON CF world what this new drug Kalydeco is doing in the CF community and why it isn't a cure but instead a corrector. Now, don't get me wrong. THIS DRUG IS AWESOME. It will change CF forever. It will change the lives of those it can help. FOREVER. But here are some things YOU MUST KNOW.

-Kalydeco is only for 4% of the CF community, Kaleb is NOT in this 4%.
-IT IS NOT A CURE
-It is a drug that will cost upwards of $25,000 a month per patient, per year, FOREVER. (We are told they are working on that and we won't have to pay that much. Many of the new drugs have costs like that initially but the drug companies and CFF are WONDERFUL at getting these drugs to the patients, so I am NOT worried about cost at all).
-This drug will have to be taken 2 times a day for the rest of the patients life.
-This drug improves lung function, weight gain, and sometimes other meds can be stopped but it WILL NOT REVERSE LUNG DAMAGE. Once damage is done, it is permanent.
-They are working on a combination drug for the other 96% that could help Kaleb but NO ONE knows how long it will be and if the one in trial right now will work. But we HOPE.
-We still HAVE TO RAISE money because there is a lot of work ahead of us.

My frustration lies in the news media shouting out A CURE FOR CF!! And then everyone comes running to us, THERE IS A CURE!! It is over!!
Um....no it's not.

I wrote to the news channel that made this mistake and they reprinted an online article with corrections changing the wording, which I was happy about. But, the article was just slipped in there, they didn't announce it. They also aren't sure they are going to make an on-air correction.
This from their online fb page: "If we run the story again we'll make sure it has the correct information."

IF?

They did just change the headline on their mobile site as well.
I guess I am frustrated because it is so hard to get any media to pay attention or come to our walks or run stories about raising money and the good in the CF community and then when they do run something it is wrong and causes us so much heartache and false hope!!

I am hoping that this channel will make the necessary corrections and then I really hope they and other stations will take a genuine interest in our kids and CF and start running some stories and reporting on this disease. We need awareness. I also hope to get media coverage at the walk this year.

I get that news media and people are human, I get that and I appreciate recognizing it and making corrections. My frustration is that it will take a while to correct this misinformation and I pray it will not negatively impact our community and awareness and the funds we need to keep making advancements with this drug and others like it.

My fear is that people think CF is cured and it is over and the money will stop coming in. I am not sure if this is a fear I should have, but I just don't want people to misunderstand what is going on with this new drug and all the other drugs in the pipeline.

There are wonderful, groundbreaking advancements being made because of the Cystic Fibrosis Foundation and drug companies like Vertex right now and we are so thankful. We do have HOPE that all of this will be a distant memory soon and we will be giving our kids pills that will make it seem like they don't have CF. But please don't forget it is not over and there is no cure and we need to keep raising awareness and money so that we can continue along this path so that one day CF CAN stand for CURE FOUND.

*Steps off soapbox*

Home.

2012-02-01T11:21:00.000-08:00

We are home. After 15 days, I can breathe. Laundry is going, bags put away, things getting organized, homework being done. Home.
We cannot wait for Dave and Hannah to get home tonight after piano. Cannot. Wait.

I have tried to thank everyone who has given us cards, money, toys, gifts, prayers, and donations for Team Kaleb but I am sure I have missed some people in there. Please accept my sincerest thanks to EVERYONE who is on this journey with us and has been helping us out. Even reading my blog and posting on fb is a support.

One of the areas I am overwhelmed in is in the area of our fundraising for Team Kaleb. I have been doing this since 2001 and this is the first time we have gained this much momentum and participation and it is AWESOME!! For that reason I have reset our TEAM GOAL (my individual goal as well). We are now aiming for $10,000 as a team and we are already 75% there! I have had a secret dream for years to hit $10,000 and I know this year we are going to hit it! I have a feeling we might even blow that goal out of the water :)

We still have so many fundraisers in the mix which raises my confidence. Take a look at what we have going on that will get us to our goal.

-$5 hair bows by Gracy Girl Bowtique ($4 to Team Kaleb)-ongoing until May!
-Hannah's Coins for a Cure-This in itself is going to raise A TON!!! Proud of my girl!
-Open right now Tupperware Party (until Feb 10-we get 40%)
-Coming soon: Scentsy party online
-Bunco for a Cure-April 20
-My friend Shawna's 36th birthday challenge (going on today)
-My friend Alicia got her TPS school to raise funds for a whole month for TEAM KALEB
-Team Kaleb t-shirts
-Individual donations online

And I am sure there will be more!!!

This helps us so much and encourages us to have this much support! Raising money allows us to feel like we are DOING something against a disease we have no control over!

Thank you for your support, your prayers, your ideas, your donations, your love for us on this journey....

We really could NOT do this without you.....

P.S. We got our Day 15 donation today and we raised A TON in our Daily Donor Challenge...think THOUSANDS of dollars. I will post how much we raised in the 15 days on my next post.

Worlds Collide....

2012-01-31T19:50:00.000-08:00

Today has been a day of emotion for me. Today is a day I am sure I will never forget. It is one of those days that will stay in my mind forever. Like the day my children were born. The day I said "yes" to my love. The day I found out Kaleb had CF.

Today was a ground breaking day in the word of CF. Today, the FDA approved a new drug called Kalydeco (also known as VX-770) for the treatment of cystic fibrosis in patients with the G551D mutation. This is not Kaleb's mutation. In fact, this mutation only represents 4% of the CF population. Kaleb has a Double Delta F508.

Kalydeco is a drug (the first of its kind) that actually targets and corrects the underlying defect that causes CF. In English, it opens up a chloride channel that is typically blocked in CF patients with a specific mutation. It has been called "a cure" but it won't cure the disease, instead it will correct the defect on a cellular level that will then allow that CF person to function very closely like someone who does not have CF. In the trials, people gained weight, gained lung function, and even were able to stop other medicines.

When I read this barrage of information that flooded the CF boards and my FB newsfeed, I was overwhelmed. I was so happy for those this will help, but at the same time, I was heartbroken it was not for my son.

When Kaleb was diagnosed we were told there was no cure and there would not be a cure in his lifetime. Now, for the first time, there is a chance. A chance, that in his lifetime we might, possibly, maybe could see something close to a cure. But I am so scared. So scared to hope.

I am not trying to be pessimistic. I really am not. I am so elated for those this can help and I know they are working on a combination drug that could possibly work for Kaleb. His mutation is more severe, more complicated. So, in turn, the drug they would need for his mutation would be more difficult to come up with. But I am scared to hope. Scared to allow something back in that I thought I would never see.

I have read several blog posts today that echo this feeling. This feeling of mixed emotions where we are watching people in our community have hope and see a future for their kids, for themselves. But inside we are racing. What if they don't find one for our kid in time?

Today we also found out that Kaleb has lost a significant amount of lung function. After two weeks of IV's and all this mess in the hospital where he is supposed to be getting better, his lungs, in fact, got worse. Worse. Kaleb has 49% lung function. Less than half. To give you a clearer picture. At 30% they go to lung transplant evaluation and in the 20% they are listed for transplant because there is nothing else they can do.

So today, in the world of CF there has been a breakthrough. And today in my world, I can feel him slipping away. What if this is permanent damage? What if he cannot recover? We are doing everything we can, every med, every treatment, every hospitalization, everything....and still he is losing lung function. What if they find that cure, if they find that combination of drugs that will help Kaleb, but it is too late? That, to me, is devastating. To be so close....

I apologize if this comes across negatively or pessimistic or even one who has a lack of faith. My feelings don't mean I trust God. This emotion does not mean I don't believe. My tears don't mean I am not happy for those this can help and my realism doesn't mean that I cannot also see the good things. I am just struggling right now. There is a door of hope I am standing at and it has been closed. I am afraid to open it and step through, I don't know if I can handle that door being shut in my face again.

And so I cry uncontrollably at the thought that we stand on the edge of a new reality. This emotion is too much. What is happening in the CF world, it seems unreal. It is hard to take in. The feeling I have as I wait to hear if they will find what they need for Kaleb's mutation is gut wretching. My stomach is in knots. And what is happening in my world is literally hurting my insides. To watch Kaleb breath with all of his might today and give everything he had and still, only 49%....what if it isn't in time?

My worlds of hope and devastation collide....

Sharing our story....

2012-01-30T11:59:00.000-08:00

We have always raised money for CF since Kaleb was diagnosed. He was diagnosed in March 2001 and less than two months later a few of us went to the walk with money in hand. Every year it is different, in amount we raise and how much support and awareness we have. Sometimes I am really excited about raising money and have great ideas, and other years I just barely survive and get what I can.

Fundraising for CF is difficult on many levels. It can become a full time job and it can be emotionally exhausting. This is much more than a "good deed" for me. This is more than just raising money for a charity. My son's life depends on this. That is a lot of pressure.

Just recently I have felt God tugging at my heart regarding my involvement in raising money and awareness. He brought me several opportunities in regards to speaking and leadership within the CF community. As He brought these opportunities to me, I was mindful to pray that He would continue to direct my path regarding all of this. I fought Him a bit. I dug in and I was dragging my feet. I wasn't so sure about all of this. What if I fail? What if I don't raise that much? What if no one listens?

My blog and fundraising has gained more popularity this year. We started a little earlier and I have put much more work into this years efforts. I am trying to be creative and get our ideas out there to get as many people involved as possible. Instead of relying on a few big donors, I am attempting to get a lot more people involved on smaller levels so that it will add up to big things. So far, it is working.

Raising money and asking for money is also a tool to spread awareness about what CF is and how God is using this disease for His glory in our family. I want God to shine through and in our journey as a family as we deal with CF head on.

So many people don't know what CF is or don't understand it. What a lot of people don't know is that CF is an orphan disease. Meaning, it gets NO government funding. That is why we as parents have had to take on such a big role in fundraising. If we don't do it, it literally won't get done. There isn't money pouring in for research like for other diseases. If we want a cure, we have to fund it.

The more people that know what CF is, that know it is an orphan disease, that know how close we are to a cure, and that can share our story....the closer we get to actually raising the funds needed for the key research to find a cure! We have seen so many positive things lately regarding new drugs released to target the pseudomonas that plagues our son and many others with CF. This bacteria is nasty and it is resistant and resilient and we have to fight it so that when a cure is found, our kids lungs are in the shape to even be able to get that cure. Lung damage is permanent. So, if we can't fight these bacteria and keep the lungs healthy, it won't matter if there is a cure. The damage will be done. The CF Foundation has also had somewhat of a breakthrough with a drug company that is in the late phases of a drug that can possible be LIFE CHANGING in the CF world. It is being called "a cure" as it will be a daily pill that will change the way the body works on a cellular level. Although the one they have working now is not for Kaleb's mutation and genotype, it is a HUGE advancement and for the first time since we have been involved in the CF community, there is lots of HOPE around this.

I am so excited because things are falling into place. I have been asked to speak at several CF and Make A Wish events to share our story and help raise funds. I really LOVED doing this and started praying that God would continue to bring these opportunities to me. And He is. I will be speaking at a CF Fundraiser in April about our story and our fundraising. I was just asked to go speak to a local school about Kaleb and CF as they kick off their own fundraiser for a whole month for TEAM KALEB. I will speak again at the Make A Wish training in the spring and there are some media things in the works that I hope can happen so we can further share our story to bring HIM the glory and AWARENESS to CF.

Please join me in prayer for this. I LOVE sharing our story because I know God can be glorified and I know that awareness needs to be brought to this horrible disease. When I am speaking, I know it is what I am supposed to be doing!

I am looking for these chances to share our struggles, our life, our fundraising techniques, our passion in finding a cure. I want God to use these chances, my blog, my fb, and my interactions with those around me to help find a CURE, raise money, raise awareness, and show them God through it all. I know HE can do that.

CF is hard. To watch my son's body be ravaged by this disease is heartbreaking. To see him struggle and for our family to be strained as we daily battle this disease is so tiring. I am honest about our struggle. It isn't easy and I don't like it. It is hard on my son, the patient. It is hard on our marriage. It is difficult on Hannah as a sibling. It tests our Faith, our relationships, our family, our finances, our emotional stability. But... it is our journey. This is the path we are on and we will fight it. Together. And as we travel this journey, we hope that God can be glorified and positive things can be done to make strides for the future of what CF looks like. So that other families who hear those words that their child has CF can have a different journey than we do and can have a different future and outlook than those who are in it today.

And so I share our story. A story filled with many ups and downs and emotions. But through it all, I hope people can see in our story something wonderful. Some Hope.

A light at the end of the tunnel-Day #12

2012-01-29T19:53:00.000-08:00

12 days. Geez. That is forever. I have watched patients come and go. Check in and check out. Nurses on shift and off. Everything is continuing on but we feel like our world has stopped. When we are here it is such a surreal experience. Life goes on without us. People come and go, hustle and bustle and we just stay. It seems like barely anytime has passed but at the same time, I feel like we have been here forever.

Doc said those magic words today. We can go home Wednesday. Finally. That will be 15 days. 15 days. Half a month. One pay period. A long stinkin time.

We will go home NOT on IV's which is so incredibly weird. We have NEVER, may I repeat NEVER gone home and NOT done IV's. It is totally wigging me out. I mean, I get to go home and sleep. Through the night. Not have to go by the pharmacy and pick up a back seat of IV's, meds, and supplies. Not clear out an entire shelf in my fridge. Not turn my dinner table into a mini hospital. Not get up every 2 hours and change his IV's. Not worry about his needle and IV's while at school. We have been doing this since....forever. Almost 11 years.

Part of me feels like it isn't right. I am concerned he isn't healthy enough to stop, to be quite honest, his cough isn't all that much better and his weight is way down. I am praying he doesn't relapse and I pray we don't end up back here soon. I am curious to what his PFT's will be when we leave and then in one week and two weeks. I am curious to what his normal specialist will say when we have an appointment in 2 weeks and what his lung culture will say. I hope those 2 strains of resistant colonized pseudomonas are asleep by then or at least not active and ravaging his lungs.

But today, for the first time in a while, I could see that light at the end of the tunnel knowing we would be in our own beds on Wednesday night. Away from intrusive medical personnel coming and going at all times of the day and night. Away from the questions, the beeping, the loud talking and slamming of doors in the hall. Away from the dinging of the elevator just enough in earshot to lull me to sleep at night. Away from the machines ticking and tocking and chugging and beeping 2 feet from my head. Home. Oh, I can't wait.

I can't wait to be able to roam free at will and go to my own kitchen. To get my own stuff and not have to ask. To cuddle my family and just be with them. I think I even miss that annoying dog barking next door.

I am pushing towards that light and through the next few days where we can almost taste freedom. I am working through emotions with Kaleb on all he has missed and catching up on his work. I am trying not to think about when we will be back and what our next stay will hold.

For this moment I am thinking about freedom and all those things we take for granted in our day to day life. The smell of brewing coffee. The hum of my ceiling fan. To be able to control the temperature in our house or drive my car. The sound of my kids laughing and playing together and hearing my sweet husband breath at night next to me. To have clean clothes and to tuck Hannah in bed. To see people in more than hospital scrubs. To have a moment to myself to just breath. To cry. To wind down. To let go. To get myself together again so I can push on.....

I see the light at the end of the tunnel.....

More than just basketball games....

2012-01-28T19:59:00.001-08:00

I am overwhelmed tonight with emotion as I think back over what occurred today. Today, Kaleb and I were able to watch Hannah's Upward Basketball game through skype as Kaleb's' coach went out of his way to get it set up and approved so we could "be there" to watch. Hannah's little eyes lit up when she saw our faces on the computer screen. He sat in the stands and did play by play for us and then moved the laptop back and forth so we could watch.
Then tonight, he did the same thing but on the bench of the team Kaleb plays for. They carried the laptop to the huddles, time outs, on the bench, during prayer, and team meetings...all the while coaching the team. Kaleb was so sad he was missing the game but it meant so much he could "be there" and wave to the boys, they could say hi and we could watch the game.

You don't find too many people these days that will go out of their way to do something this special. The Upwards organizer helped get skype on the coaches computer and get the wireless set up and allowed the laptop to be on the bench. The coaches and teammates said hi and waved and made Kaleb feel like he was right there.

We even got to hear them announce Hannah's Coins for a Cure and that they would be collecting at games and practices for the rest of the season. Kaleb's coach brought Hannah a big water jug so she can take it home to decorate it so it can sit in the gym to collect coins.

It would be very easy to make it just about basketball. It would be very easy to say to us, see you when you get back. But instead, a team of kids came to visit Kaleb at the hospital and a group of coaches/organizers went out of their way to make sure Kaleb could still be apart of something much more than just a basketball game.

To Kaleb it meant for just a little while he could forget about CF and the hospital bed we were sitting in and smile and laugh with his teammates and sister. For this mom, it brought tears to my eyes and joy to my heart to see my daughters eyes light up as she realized her brother and mom would actually get to see her play her game. For both of us, after 11 days of being cooped up in the little room, we were able to smile and laugh and experience something that had nothing to do with CF. For just a little while, we were able to forget and just enjoy.

It was wonderful.
Words can never adequately express what today meant to us....

It was just so much more than watching basketball games.

Day #11-Update

2012-01-28T10:12:00.001-08:00

Yesterday I started feeling weird but I just assumed it was because I am so overtired. A little after dinner I realized that I had the tummy virus Kaleb had on Monday. Kill me.
That is what I was thinking last night as I was puking my guts out in a hospital toilet.
Luckily, Kaleb was super tired last night and he crashed early, which allowed me to puke and other various disgusting things in private.
Kaleb is still having tummy issues to his doc pulled off the daily bactrim and zithromax to see if that helps. But today, a little after he started eating lunch, he complained of his tummy cramping and went into a coughing fit. We are finishing up treatments now. Not really sure what is going on.
So, we are just hanging out trying to feel better.
Today, Kaleb's basketball coach went to Hannah's game with his laptop and we skyped so we could watch her game. It was awesome and they tied 10-10. She got the defense award and she was so happy we were watching. We will do it again tonight for Kaleb's game to watch his team at 7pm.
They announced Hannah's coin project at Upwards and Kaleb's coach brought her a big water jug to decorate to keep at the gym for coin collections. She was super excited.
Thank you to everyone making my little Hannah's project a success, she really needs this!
Got ahold of the new counselor through the Docs office and we are going to have a family appointment soon after we get out of here. Insurance is going to cover it and she sees families, or individuals, dealing with chronic/terminal illness. I am excited, especially for the kids. I think this could REALLY help.

If you have a chance check out the post below and order some tupperware. You can ship straight to you and they have all price ranges. TEAM KALEB gets 40% and we will do this until February 10. Every little bit and little order counts! I also posted it on facebook!

We are also looking for our daily donor today! Click on this link to donate! Any amount!

http://www.cff.org/Great_Strides/teamkaleb

I will update again later after we see the doc if there is any change.
Thanks for your prayers!

~Kristi

Tupperware Party for Team Kaleb=40% of sales!

2012-01-27T09:32:00.001-08:00

We are having a TUPPERWARE party until February 10 for TEAM KALEB with all money going to the Cystic Fibrosis Foundation. The GREAT news is, we get 40% of all sales!! Click on this link and order and if you ship to you it will ship right after you order, you don't have to wait until after the show closes! If you have any problems with the link let me know. It may take a few minutes to connect but it will take you to the website. Once you are there click "shop this fundraiser" and then you can start ordering. You can order from the fundraising catalog or regular online catalog. They have things under $15 too! Pass this info along!! 40% to TEAM KALEB

http://order.tupperware.com/pls/htprod_www/!twx$eparty_ctl.p_guest_welcome?pv_eparty=79bafdf35f52e51

order.tupperware.com

Whoo hoooo-Update Day #9

2012-01-26T16:16:00.000-08:00

All of Kaleb's labs came back fine. Praise God!! No bands and everything else was in normal range. He is also eating better. We are taking a few more doses of Vancomycin and then discontinue in the morning. We will then take oral Bactrim for 10-14 days just in case there is something we missed.
The final report for his blood cultures is not back yet but so far it is looking good.
Because of this tummy thing, his lungs getting better kind of stalled. He isn't worse, but he isn't as far along as he would have been normally. We are definitely here through the weekend and pending any other setbacks, we will start talking about going home at the beginning of next week. Dr. Lee said he is still thinking just the two weeks on IV's which means if we stay here two weeks then we would not go home on IV's. Oh my goodness, that would be amazing. I might actually get to sleep :)
Kaleb's basketball team is almost here and he is really excited. I am hoping he can feel better and get back to basketball soon.
Keep praying, it is working!!

~Kristi

Wednesday Update-Day #8

2012-01-25T19:54:00.000-08:00

Today was a rough day in the sense that Kaleb and I are tired and he has been struggling with eating. He gets tired and runs out of energy fast when he has not had that much to eat. Finally, this evening, he has started to do better with food. He has lost 2 pounds, but that is to be expected with not eating since Monday.

We are taking it slowly with the food. What he feels like eating and in small amounts. We will add back his night feed tomorrow night and try to get back to a semi normal diet. The doc is pretty sure he has had the combination of a stomach virus and IV tummy. The IV's are so strong (and there are 3 of them) that an adverse reaction is loose stool. Very loose. Because he has lost weight and is having tummy issues, they decided to run tests on his stool and Rotavirus came back negative, which is a HUGE blessing. The C-diff tests haven't come back yet, but we are pretty sure he doesn't have that.

The 2 blood draws from this morning showed us that the level of/dosing of his new IV Vancomycin is not high enough. That means they had to adjust it and we will have to do more blood draws on Friday morning if he is still on it then. We will have to continue the blood draws and checking levels and make adjustments for as long as he is on that, until it falls within normal range. That is usually what makes us have to stay longer.

So far the blood cultures have not grown anything, which is good. The final report is after 5 days, so we are not out of the woods yet. But, it is encouraging nothing has shown up yet. We will draw blood from his port tomorrow for a CBC to see if those bands show up again. If they do not and his tests are normal, we will stop the Vancomycin. If the bands are there, we have to continue the Vancomycin and wait for the final report on blood cultures. If he spikes another fever, they will have to do more blood cultures. That just prolongs our stay.

So far, I have not seen a huge improvement in his lungs, which is the whole reason we are here. He has not "turned around" yet and I attribute that to this tummy setback. His body is busy fighting that and not able to heal. As soon as we get all this figured out and he can start eating and resting better, I hope to see improvement in symptoms. Then, we can start talking about getting home. We are at least here through the weekend. I feel like tomorrow will tell us a lot and give us a better timeline.

I am exhausted. I really haven't slept very much since we have been here. I normally don't get great sleep, but this stay it has been worse. It is a combination of Kaleb not feeling good and coughing at night, a loud hall, and some different and not as efficient nurses. Our normal nurses for nights have either been out sick or not on and I am telling you it makes all the difference. Having an IV machine beep practically every hour for 5-10 minutes and having to get up and go get someone makes for a bad nights sleep. I think we will both do better once we are home.

There have been some wonderful things happening in our world of raising money and awareness. We have been getting money every day we are here from our Donor a Day (sometimes more than one donation) while at the hospital. We also have a lot of fundraisers going on and in the works, that coupled with our efforts so far means great success for Team Kaleb. We have already raised over $4,000. One of the reasons we are so passionate about raising money is that the CF Foundation gets NO GOVERNMENT funding at all. It is an orphan disease. We have to raise the money ourselves to get new drugs and research for a cure.

Hannah's Coins for A Cure is really taking off. She is getting baggies each day and more and more people are starting to participate. Our Upwards basketball group is getting involved and through that we have some possibilities for some REALLY cool things to happen. I can't mention anything yet because the details aren't worked out but some important people have taken notice of my daughters passion for her brother and I am excited to see where this leads. Please pray that God would continue to open doors for us to raise money and bring awareness to CF and Him. I am already speaking at a big CF fundraiser in April focusing on Hannah and her new understanding and her role in fundraising so this will just add to our story and help us continue to raise money for a CURE for our boy. I will update when I can!!

Kaleb's basketball team is visiting tomorrow night before practice and Kaleb is very excited! I am glad they get to come. I am hoping that he will get out soon and be back on the court. Hannah has another game Saturday and I am sad to miss another one. I know she will do good and I can't wait to see her play again.

Please continue to pray for us.
Pray for our family as this is very tough on us being apart.
Pray for no scarring in Kaleb's lungs and for his lung function to go up.
Pray for his symptoms to turn around so we can go home.
Pray for test results to be favorable and answers to come.
Pray for Hannah.
Pray for our fundraising to be successful and that we can glorify God in all of this.
Pray for more opportunities to bring awareness to CF and funding a CURE.
Pray for all of our spirits to be lifted and that we do not get discouraged. Pray with us against satan and his discouragement.
Pray for our testimony here in the hospital as we deal with adversity and our story will be a testimony to HIM.
It is ONLY with Him we make it through....

~Kristi

Team Kaleb is kicking boooooty!

2012-01-25T12:07:00.000-08:00

There are so many ways you can help Team Kaleb! We have been doing so many wonderful things to raise money for CF and a Cure for my boy.

So far we have collected coins, had several businesses donate like: BP, Yale cleaners in Owasso, Green Wing Lawn & Landscape Services Inc, Pampered Chef (consultants Jodi Carter and Missy Swafford), Music to Grow By, and we have had 2 Pampered Chef parties, straight personal donations, $11 birthday challenge, and the Donor a Day challenge in the hospital! Our grand total as of right now is $4,225.14 and that does not even include Hannah's Coins for a Cure!

My goal as an individual (not including Hannah's coins) is $6,000 and I know we are going to pass that WAYYYY up and I am so excited! I have a secret dream for our team to hit $10,000!

Here is what we have going on now and in the near future to raise money for TEAM KALEB:

-90 Day Challenge: Join this challenge before the end of the month and 100% profits go to Team Kaleb. Check out the link below for details. If you want to get fit and healthy and lose weight while helping Team Kaleb and the CFF, this would interest you.

http://tracyh.myvi.net/challenge

-Hannah's Coins for a Cure: This fundraiser is really picking up momentum. Our Upwards basketball league has joined force, some of my women friends collected at women's retreat, there is a fb group started by our good friends Marcia and Tim Cato, friends from church and school all are getting their baggies of change together for Hannah. She has filled up one huge coffee container with coins and bills and is moving to the next. I know she is going to have a TON of money by May and it will go under her own "account" under Team Kaleb so she can be proud of the money SHE raised. All of that will contribute to our TEAM total and I am secretly hoping to blow the team goal of $7,000 out of the water.

*I have heard there is a local bank that matches coins up to $1,000 for charity?? If anyone has any info on this I would be VERY interested in this program.

-Bunco for a Cure: This is going to happen on Friday night April 20 at Cedar Ridge Church in Broken Arrow. There will be tickets sold, dessert and coffee, raffles, baskets, donations accepted. This is still in the planning stages and if you would like to contribute $ or items for this please let me know. Any items like jewelry, food gift cards, Ipad, Ipod touch, dessert, coffee, gift baskets, rented tables and chairs, gift cards, TV's, electronics, gaming systems....we will take anything! So let me know if you can donate or know someone or a business. This is a shared fundraiser with Fanconi Anemia (www.fanconi.org). All profits will be split 50/50 between CFF and Fanconi. My friend has a son who has this and it is also genetic and without a cure. This fundraiser will be going through Cedar Ridge so everything is tax deductible. Cedar Ridge will then write the checks to CFF and Fanconi.

-Tupperware Party/online and catalog style: This is going to kick off within the next week or so and 40% profits will go to CFF. My friend Ashlee Priest is a consultant and we are working out the final details. So, get ready to order and get some cool stuff and raise money for CF.

-Music to Grow By: Our music teacher at school and Hannah's piano teacher Beth Carr (we also go to church with her) owns a great little business called Music to Grow that offers music lessons and Kinder music at 81st and Sheridan. She is giving $5 from each spring registration to TEAM KALEB and we should find out here very soon how much we get!!

-Team Kaleb Hair Bows/Flowers: Gracy Girl Bowtique owned by my friend Kim Lee has made Team Kaleb its own signed beauty flower hair bow and it is $5! For each sale, Team Kaleb gets $4! We have already sold over 40 bows and we are selling until May! I have some pre-made so tell me how many you want and I will get them to you. If you are not local, just pay shipping (about $5) and I will mail them to you! They are purple for CF (the official CF color) and there is a picture at the top of what they look like!

-Team Kaleb t-shirts and bracelets: Both of these are in the works and both will have all profits go to TEAM KALEB! Kaleb is in process of designing and brainstorming on these RIGHT NOW!!

I am passionate about doing what I can to raise money for a cure for my boy. I may not be able to stop what it is doing to his body and us having to be in the hospital, but TOGETHER we can raise FUNDS for a cure!!!

Thank you for partnering with us! CF doesn't stand a chance!

~Kristi

Tuesday Update-Day #7

2012-01-24T13:03:00.000-08:00

Kaleb went without fever since late afternoon yesterday. His tummy is feeling better and he has eaten small bits today. He is acting better and feels better.

The respiratory tests came back negative. That means no flu, rsv, or any other respiratory virus.
I posted yesterday that on his blood tests, his lymphocytes are low indicating viral infection but his bands came back high indicating a possible bacterial infection in his blood, so they are waiting until the cultures come back in 3-5 days from yesterday's draw.They took blood from the port and hand so we will know if there is infection in his blood or in his port. Meanwhile, we started Vancomycin last night which is a very strong IV that would help if he did have some kind of bacterial infection. He has to take Atarax an hour before the IV dose to prevent allergic reaction and another problem is that this IV can cause toxicity in his kidney's so we have to do levels before and after his 5th dose to make sure it is in the correct range(how his body is metabolizing it). If it is high or low, they adjust and retest the levels again after the 4th or 5th dose. This involves getting blood from Kaleb's peripheral (cannot use port because that is where the meds are going in and it won't give an accurate level) and that means the only good veins left in his hand. He has already had 3 draws in 7 days and he was not happy about this. It will be tomorrow morning at 6:30 am and then again at 9 am. We will do this until the level if right or we find out we don't need to be on it anymore. As soon as we know his blood is ok, we will stop it because of its possibility for toxicity (kidney damage or failure).

We can start having visitors Wednesday so if you want to visit just let me know and we can arrange a good time. Please be sensitive if you have been sick or don't feel well. Kaleb's immune system is fighting the junk in his lungs so he catches other stuff really easily.

Doctor Lee said we will be here through the weekend and will re-evaluate on Monday our time frame. This is because of the setback with tummy and fever and waiting on test results and the new IV. I hope to go home sometime next week which would put us at our 2 week average. Hoping he won't have to be on IV's much longer so he can do basketball. If we have some kind of bacterial infection in port or blood we will have to change our timeline and treatments. So, praying that is not the case.

Kaleb is in good spirits with all the setbacks, tests, and needle sticks. As long as I tell him ahead of time, he can process it. He has a nursing student today and taught him all about taking blood pressure, pulse ox, and IV's. The student seemed surprised Kaleb knew what he was talking about. I heard him talking to his teacher outside about how Kaleb was only 11 and was right. It made me smile.

I am struggling. I know a lot of it is lack of sleep and lack of contact with humans besides medical staff and Kaleb. I am also having a hard time with all the extra stress and pressure this puts on David and Hannah and how they are coping with us all apart.

Hannah is REALLY having a hard time. She is just not herself and little things are upsetting her. She talks to us on the phone and I can hear it in her voice. She asks brother when he will be better and then talk about playing when he gets back. My heart is broken. I feel so torn. I know I need to be here with K, but it isn't fair for Hannah. This all isn't fair. I am afraid she is being permanently damaged by all this. The stress, the emotional heartache. I am crying just typing this. I was not prepared for the impact this would have on her and us dealing with how it impacts her. The things she has had to deal with and process at her young age....no one should have to.

Please continue to pray for our family. For each of our individual struggles. For Kaleb's lungs and no scarring. For my sweet Hannah. For Dave. For us to be together soon. Pray for answers for his blood tests and that he doesn't pick anything else up.

We are also continuing to collect coins, actually Hannah is. She has filled up a huge coffee container and is moving onto the next. You can bring her/us baggies of coins at school or church or let me know and we can arrange to pick it up. It all adds up so every little bit counts AND it really is helping Hannah to feel like she is doing something and she is so proud of this.

TEAM KALEB has raised $4,000 so far!! We have a donation for every day we are here and still looking for one today. You can donate anytime in any amount. NOTHING is too small. Will you be our donor today for Day #7?

http://www.cff.org/Great_Strides/teamkaleb

All of these funds and the coins are for TEAM KALEB Great Strides Walk in May.

Thank you for your support

~Kristi

Kaleb Update Day #6...START PRAYING

2012-01-23T10:05:00.001-08:00

Kaleb is battling tummy issues today. We don't know if it is a tummy virus or just drainage and meds but I am leaning towards a virus. It is going around like crazy so it wouldn't surprise me. He won't eat and is just laying there very pale. They gave him some Phenergan to ease the nausea and retching. He cannot physically throw up because he had a fundoplication surgery when he was little and his g-tube was placed. This causes "retching" which is like throwing up but nothing will come up. It is violent and painful and if he does it too much it can undo the fundo and cause internal issues. He is resting now.

***Kaleb just spiked a fever and it is high enough (102) that they are going to start running blood and urine cultures to make sure we aren't dealing with any kind of blood or other type of infection. They said usually these tummy things don't spike high fevers. We will see. The nurse said they will run urine, blood cultures off his port and peripheral to test his blood for infections, then do a nose and throat swab for strep, flu, and other things respiratory related.

He is so out of it and bummed because his basketball team was supposed to visit tonight. I hope they can come over tomorrow or Wednesday, he was REALLY looking forward to it.
Please continue to encourage us through fb, txts, emails, and comments. We love to hear from you and especially now that we can't have visitors for right now.

Also, I am looking for 4 more donations today to our TEAM KALEB Great Strides. We have been here 6 days and have 2 donations. I would like at least one for each day. ANY AMOUNT! Let me know if you do so I can keep track. Click on this link to donate online securely!

http://www.cff.org/Great_Strides/teamkaleb

Please pray we get answers and know how to treat Kaleb.
Thank you
~Kristi

A Simple Challenge

2012-01-23T06:43:00.000-08:00

We are on Day 6 in the hospital and we have had 2 awesome donations to TEAM KALEB since we came in. Can I get 4 more people to donate (one for each day) today? Any amount! Let me know you are and I will keep track!! Who is in? ANY AMOUNT!!!

http://www.cff.org/Great_Strides/teamkaleb

Ok guys, so simple right?? So, who is in? Let me know, comment below or fb me and if you make a donation it will notify me within 24 hours!! Funds for a CURE!!!

My Random Thoughts...Don't judge me.

2012-01-22T19:04:00.000-08:00

There isn't any news to report.
This is the part of the stay where we go crazy and I feel like crying.
I miss my family being together.
We have had lots of visitors which is awesome.
We are so blessed by all of our family and friends who are generously giving of their time and gifts.
We are on the loudest part of the hall and Kaleb doesn't want to move, he is "settled" all ready (his words).
I left today for a few hours to take Hannah to youth volleyball practice and now I am sad. It reminded me how hard it is to be in here for so long.
Hannah is REALLY struggling with us being apart. She misses her brother. And me. She told me today she is sad but trying hard to be brave.
I cried.
Now we just wait. Wait for the meds to work and for his symptoms to turn around. I am not a good waiting person.
Homecoming week is this week at school and I am in charge. But I am here. So...people are having to help me and do more work on top of their jobs to help me. It makes me feel bad.
Kaleb's basketball team is coming to visit tomorrow night. K is excited. They had pictures on Saturday and he missed them. I was REALLY bummed about that. Today his coaches texted me and said they are doing re-takes in 2 weeks and even though they took a team pic without him, no one ordered. They all want to wait until he is back.
When I heard that my heart was so happy, but then I cried.
Everything is making me cry today.
Toddlers and Tiaras marathon was on. I watched it. Man, those parents are nuts. Seriously. I then went to the nurses station and we were pretending to be the moms and we were talking about how ridiculous that show is. It is a train wreck, but it is so hard not to watch.
Then I got mad that those stupid parents glue eyelashes on their 3 year olds, pump them full of mountain dew and red bull, and spray tan them until they look like a pumpkin. As the show shows the girls saying they hate it and want to stop and then cut to the moms who obliviously comment on how much their daughters LOVE all the hoopla. Get real.
Someone in charge of St. John needs to put a Starbucks on the 7th floor.
I have eaten a lot of sugar candy this week. A LOT. It is a fundraiser for CF by the nurses. At least I am contributing to a cure.
I am really bad at words with friends. I won't be mad if some of you stop playing me, I realize how bad I am. I am just too tired to come up with words beyond "the", "poop", and "Qi". I don't even know what that last one is, but it gets me points.
I was playing Dave in 2 games and one of them I was winning (barely) and the other one he was annihilating me. I was so proud I was almost winning the one game. Then he informed me I was actually playing my 9 year old daughter.
At least she takes after him.
The stomach bug is going around, again. Everywhere. I don't know of anyone here that has it, but it is all over the place. Pray we don't get it. I just might lose my mind if we do. Seriously. At least the psych floor is only a couple of stops up the elevator.
Kaleb is into fish, birds, and dragons right now. So obviously, I now know EVERYTHING about them. He is also into Ninjago. He keeps trying to convince me I am too. He even picks out the toys "I want".
I skated down the hall today in my socks. Kaleb rode his IV pole like a skateboard. People in the waiting room think we are crazy....hehehe. We are.
We don't know how long we will be here, but you had better believe when we know we are going home, we will shout it from the rooftops, don't worry.

Paradigm Shift....maybe. Day #4 Saturday

2012-01-21T06:21:00.000-08:00

I spoke with Dr. Lee yesterday about how long we are going to be here. He brought up that in the fall when they went to the National CF conference, findings were presented that showed that after 14 days of IV's there was declining benefit. That between day 14-21 there really wasn't much that would benefit the patient. This is fairly new and I know some docs have been doing this already but they gather all their data and present it at the conference and then the other docs and centers start implementing new things.

I posted on the CF sites on fb to see what everyone thought and the general consensus was YES, that is the new normal. 14 days.

In some cases you could be on them longer than 14 days. If you start on on IV and part way through they have to switch it either because cultures show you are on the wrong one or you don't see any symptom change within a week, then those 14 days start over. So, in actuality you could be on IV's longer than 14 days.

He told me that means if you stay in the hospital 14 days, you don't do home IV's. Um, excuse me??? Or, if you stay here less than 14 days, then you just do home IV's til 14 days hits.
Ok, we have been on IV's for like 4-6 weeks before. This is really freaking me out. But, in a good way.

It is going to take a little bit for me to wrap my brain around this and I still want to hear from Dr. Carey on what he thinks since he is our main doc. So, I believe this may be a Paradigm shift? Maybe? I won't get all the way on this train until Dr. Carey confirms this in February.

But, I think this means we will be here for shorter stays if the IV's are right and less home stuff. Oh my goodness, I am getting kinda excited.
I also think this may mean we might have to do this more frequently. But we have to just wait and see how he responds and how fast he gets sick again.

It is a good thing in another regard because we are running out of IV's that are showing sensitive to the resistant colonized pseudo and the longer and more frequently you use them, the higher chance they will stop working. So that is good.

We don't know what that means for this stay but we do know that after 14 days, most likely, we won't be on IV's anymore. I am excited because that means K can get back to basketball and PE and running around without the needle in his chest!

His Vit E level came back high so we are discontinuing his extra Vit E we started. His Vit D level came back still too low so we are going from 5,000 IU two times a day of Vit D 3 to 10,000 IU twice a day. Everything else is the same. He still has some crackles in his lower left lobe but this morning the doc said he thinks it sounds a bit better.

I will update when I know more on how long we will be here!
Thanks for your prayers and support!
~Kristi

Raise money for TEAM KALEB

2012-01-20T06:47:00.000-08:00

Here are a few ways to help TEAM KALEB:

1. My mother in law is having a Pampered Chef Party tonight at 6:30 in Broken Arrow for TEAM KALEB and the CFF. Let me know if you want to go and if you can't make it to the party, please consider ordering online: TEAM KALEB gets 15% and every order helps! They have GREAT stuff!

www.pamperedchef.biz/missyswafford

Enter Tammy Bowers or Cystic Fibrosis Foundation as the host name.

2. If you like TUPPERWARE then hold on to your dishes because we will be having an online TUPPERWARE party VERY soon for TEAM KALEB and we get 40%!! I know right, that is a TON for a fundraiser! Keep your eyes open and save that cash!

3. You can ALWAYS just do a straight donation to TEAM KALEB through this link and help us reach our goal of $6,000 for me and $7,000 for the whole team. We are more than half way there!!

http://www.cff.org/Great_Strides/teamkaleb

4. If you are local, Hannah is collecting change for CF. This is HER idea and she is VERY excited about her first REAL fundraiser for K. She is collecting from now until May and has a coffee container full. She will cash it all in before the walk and take it with her. You can bring it to her or one of us at school.

Thank you for your support!!!

Kaleb Thursday Update-Day #2

2012-01-19T07:21:00.000-08:00

We saw Dr. Lee late last night and then early this morning. We will see him again Friday afternoon and hopefully have lab results by then. The sputum culture takes 5-7 days for final report (this will let us know we are on the right IV meds).
Kaleb for sure has some pneumonia in his lower left lobe. From the x-ray it looks like some streaking is there as well and we won't know if that is just this infection or permanent scar tissue until after he is better.
Today we start the new vitamins and daily Zithromax. He shouldn't have any negative side effects of these. We started his IV's yesterday and he has been on them before and they don't have any toxic side effects. They just are so strong they can upset his tummy a bit.
We have no idea how long we will be here because we have to wait and see how he responds to the meds and when his symptoms improve and we have a different doc than normal. He hasn't said anything regarding time other than we have to wait 5-7 days to get all the tests back and make sure he is improving. Even if the cultures come back that he is on the right meds, if his symptoms don't improve in 5-7 days they will switch up the IV's. Labs aren't always right as we have learned.
Thank you so much for your support. Kaleb can have visitors, just call or text, fb first so we can make sure it is a good time. I posted wish list on yesterday's entry but feel free to ask!

We have visitors tonight for Kaleb already and I have meals today at lunch and dinner, and Friday for dinner. Thank you guys for all you do to help us through this.
Make sure to leave us comments here, on fb, and or email! We love to hear from you and it helps pass the time and beat the hospital blues :)

PS Pray for Hannah as she has a basketball game tomorrow and I can't be there :( This is hard on our little girl being away and having all this go on. Pray for Dave as he manages work and our daughter along with the stress of K being in.

EDIT***Kaleb got a water bottle, and the Hero Factory Rocka and Furno. Thanks to our Sunday school class!! He has added any of the other Hero Factory guys :)

~Kristi

Kaleb Update-Wednesday Day #1

2012-01-18T13:30:00.001-08:00

Kaleb has been battling some junk since before Christmas. We have had him on oral Cipro and inhaled Cayston but I have not seen much improvement. His culture from December showed one strain of colonized Pseudomonas growing mildly but since it is always there, mild isn't a big deal.
I have noticed more congestion and coughing over the last few weeks and at his appointment a week ago we cultured and did PFT's. His PFT's (lung function) dropped dramatically 13% in the mid 50's - low 60's and that with the increased symptoms concerned me.

At his appointment last week, Kaleb's doc gave me some guidelines for hospitalization. Since he was going out of town for a month, (medical missions trip) he was leaving instructions with me. We were supposed to go back in for repeat PFT's in another week but when we got his sputum culture results, we knew we needed to see Dr. Lee for a consult and chest x-ray.

Kaleb grew gram positive chain bacteria (b. strep and bacterial pneumonia) and then 2 different colonized resistant strains of Pseudomonas. That is not good for several reasons. First, he grew it ON CAYSTON which isn't supposed to happen and hasn't happened since we started Cayston over a year ago. It is an inhaled antibiotic specifically for resistant pseudo. Second, there are TWO strains. He has only ever had ONE. So we have a new stubborn resistant (not responsive to almost all antibiotics, only one IV is showing sensitive) colonized (won't ever go away, always there) pseudo that has taken residence in my boys lungs.

With all that info, we decided to admit and get IV's on board ASAP to limit growth and scarring.
I am a bit nervous as this is the first time without Dr. Carey in the hospital. Dr. Lee is great, we know him, he has treated Kaleb before but WITH Dr. Carey. I have issue with change, but I am trying. He is great, I am just a control freak.

So we are waiting on another chest x-ray because we heard crackling in his left lobe and we are suspecting some active pneumonia, we have about every lab on the planet being run on his blood including the aspergillus he has continued to culture (they said it is also a colonized) since July to see if it is active (it causes dramatic drop in PFT's) and we are doing another sputum culture (that won't be back for a few days). They will also run a panel on his blood sugars to check to abnormalities as he falls within the age guidelines for CF related diabetes.

We will see Dr. Lee tonight to see what our plan of action is. We are adding a few new vitamins besides his Vit D3 and Vitamax. He is adding Beta Carotene, Vit E, and Vit A. He is also adding a new once a day pill/antibiotic called Zithromax (this is common for chronic colonized pseudo growth). He is going to be on Zosyn and Cefapime IV and then depending on what the labs and cultures say we will adjust if necessary. Both of those he has been on before and both don't have any toxic side effects so that is great!

We are in contact precautions simply because of the resistant colonized pseudo. We don't want other CF patients to get it and we don't want the nurses to carry it to other patients. This means gloves and gowns every time anyone comes in and I cannot go to common areas like the parent kitchen (drat). We can go out for walks around the halls (Kaleb has to do laps everyday) but we can't stop and hang out or go into any common areas and Kaleb has to mask up.

We are good with visitors but we ask for a few things.
-Call, email, or text first so we can make sure we don't have everyone at once and that Kaleb is up for visitors.
-If you have been sick or feel sick please don't come. You can always drop stuff off at the nurses station or I can mask up and meet you in the lobby.

Here is our wish list:
For Kaleb and Kristi: Gift cards to Panera, PF Changs, Olive Garden, Goldies, Wendy's, starbucks, walmart, target, mazzios, dominos, $ for food

For Dave and Hannah: Qdoba, sonic, subway, Taco Bueno, mazzios, dominos, walmart, $ for food

Kaleb would love: Garfield DVD's, Lego hero factory Rocka and Furno, Tom and Jerry cartoons and movies DVD's, Lego Dino sets, Lego Star Wars sets, Book #2 , #3, #4 in the Eragon series by Christopher Paolini (Book #1 is called Eragon, book #4 is called Inheritance), pretzel M&M's, reeses cups, gummy bears, he needs a reusable water bottle with lid that closes (we left his at home)

Kristi: anytime anyone wants to bring me a meal I would LOVE that, I never know when I get to eat up here. Just contact me and tell me where and I will let you know! And our course, I will never turn down starbucks coffee (Skinny Vanilla Latte, Skinny Carmel Latte, Skinny Carmel Machiatto)!

Thank you so much for your support and prayers. We don't know how long we will be here but I will post at least 1 update a day on here and will link to fb.

~Kristi

Vomit doesn't celebrate Anniversaries....

2012-01-11T08:56:00.000-08:00

Sunday was our 12 year anniversary and we spent it taking care of our daughter who was dealing with a stomach virus. We lysoled, cloroxed, laundered, cleaned....it was one heck of a celebration.

I have to tell you though, I was extremely mad at this stomach virus. I mean, come on already, really? I don't know why, but I feel like since we deal with CF, all the other crap should automatically pass us over. Like the blood on the door frame during the passover, the rest of these illnesses should know we deal with CF crap on a daily basis and we should get passed over with things like the stomach virus.

My expectations of the weekend were ruined. I have serious issues with unmet expectations. I mean, serious. When things don't go according to what I had planned or what I think, it literally makes me come unglued. I know this, I work on this, but I have major issues with this.

We were able to go out on Friday, we went to dinner and a movie, a low key celebration. But it wasn't our actual anniversary. That night at about 12 when our smoke alarms decided to incessantly beep until we replaced the batteries, but ended up getting ripped off the wall, I was passing by Hannah's room when I heard...that sound. My head jerked around just in time to see her spew her entire nights worth of food all over her bed. Nice. Vomit.

I cleaned her up, Dave finished ripping the smoke alarms off our walls, and then I begged God to heal her miraculously so she could play in her first basketball game that morning and we could go on with our weekend plans. Twenty mintues later when she started heaving again, I knew my dreams were over.

I proceeded to pull out her trundle and get situated thus quarantining us to her room to avoid the spread of this horrible nasty. As I followed her to back and forth to the bathroom every 10-20 minutes with a bottle of lysol and container of clorox wipes, I just got more upset. This is ridiculous. I cannot believe she got sick.

As the night went on, and slowly at that, I continued to take care of my precious daughter who felt so bad. I was unable to sleep because of the frequency of her episodes, which only allowed me to think about all the things that wouldn't happen because of this stupid puke.

The rest of the weekend proceeded on with me cleaning up vomit, disinfecting, and trying to keep Kaleb and Dave at bay so they wouldn't catch it. The whole while, I continued to get mad.

On Sunday night, our anniversary, still in my PJ's from Friday, I lost it. With everything that had been going on, the unmet expectations, the sickness, being closed within the walls of our house with no break since Friday, no sleep and beeping stupid smoke alarms....Dave and I were at odds. On. Our. Anniversary. Happy 12 year Anniversary, I yelled.

Well, just in case you had the impression that our marriage was filled with rainbows, balloons, and constant happiness, I apologize for bursting your bubble. Life happens. Vomit happens. And Vomit doesn't celebrate anniversaries.

I locked myself into our bathroom and proceeded to cry like a teenage girl who was just dumped on Prom night. I sobbed. In the shower. Like a crazy person. I cried and cried, I tried to process it all. At that moment, my whole world was crashing in.

After a good cry and a deep breath, I got myself together. I cleaned my pathetic self up and adjusted my expectations. I started to process all that had gone on and put it back into perspective.

Here are some of my thoughts I had to talk myself out of insanity...
CF doesn't give you a pass, duh.
A tummy virus isn't a big deal, think about all Kaleb deals with.
Tummy viruses go away.
At least your husband already knows your nuts, so this won't be a big deal.
At least you have kids.
It was just one game Hannah missed, she can play in the other 7 she has.
You can go to dinner and celebrate your anniversary another day. A date is just a date. We celebrate the marriage, not the date on a calendar.
At least you are still married and have someone who will stick with you through it all.

I am not proud of my vomit induced insanity, but it happened. I have a feeling that some of you out there might an idea of what I am talking about. Some of you, if you are honest with yourselves, have probably experienced something similar. Just wanted you to know you are not alone in your insanity and that vomit doesn't celebrate anniversaries.

Moganko For CF!!

2012-01-03T09:53:00.000-08:00

There is this cool guy named Josh. You can read his blog by clicking on his name back there. Well Josh is a grown up that has CF. A few years back his cool wife got him this puppet like one you would see on the Muppets. Josh LOVES the Muppets. Since then, Josh has used this cool puppet named Moganko to spread CF Awareness.
How does he do this you ask?
Well, first he has his own blog (see above).
Second he has his own youtube channel with really cool CF awareness videos telling CF kiddos how to do different things like treatments, music videos on taking your pills, etc. You can see his youtube channel and watch his videos here. These videos are AWESOME and have really helped out kids like Kaleb to hear about why they need to be compliant with their CF stuff in a fun way. Plus Moganko and Josh are just fun!!
Third, just recently, Josh and Moganko kicked off this super cool awesome-ness neato burrito project. Moganko even has his own facebook page you can find here and become a fan of!! (Go, like it now!!) And....his own website at http://www.mogankoforcf.org.

So....what's all this hoopla about???

Well, for a few years now Josh has had his website and his youtube videos, but lately has been working VERY hard for our kiddos on this Moganko project. It kicked off a week ago and already his facebook page has over 1,400 fans!! But, there are over 30,000 people with CF AND all their parents, grandparents, friends and loved ones. So, we want WAYYYYY more fans on his facebook page and we want WAYYYY more awareness and views on his youtube channel so that we can gain momentum and awareness for CF and then.....DRUMROLL PLEASE....then, Josh's goal is to get the Muppets on board for a super awesome, once in a lifetime, dream making, coolness meter super high, neato, super rad joint project with Josh, Moganko, and the Muppets to spread awareness for CF!! How cool is that? Um, super duper cool!!
So, what can you do??

1. Go like Moganko's facebook page (see my link above)
2. Share Josh and Moganko's story on your blogs, facebook, by mouth etc. (you may link to my blog anytime!)
3. Watch the youtube videos
4. Go to all the links above
5. Join the coolest CF movement in town and you can say you were apart of this GROUNDBREAKING awesome-ness!!

We are a tight family us CF folks...AND we want to help and support each one of our great family members when they are thriving, struggling, grieving, succeeding....
TRUST ME, this is awesome and you WANT to be apart of this!!

Help a puppet out folks!! (And Josh tooooo!)

Kaleb LOVES Moganko and Josh and he would REALLY appreciate it if you could join us in this WONDERFUL campaign!!

Thanks guys!!!

PS Kaleb is in the recent youtube video called

Moganko For CF Awareness Project

in the beginning part under HOPE!! Watch it to see him holding a Moganko sign!!

A new understanding for Hannah....

2012-01-02T07:16:00.000-08:00

As we navigate this road called CF, we come across new twists and turns all of the time. Some of them we anticipate, come of them come at us unexpectedly. This Christmas, we hit a new bump that I had not anticipated. I am not sure if I knew it was coming, I just didn't expect it this early, or if I completely looked over it with everything else we have to deal with.
Hannah.
Hannah processing and understanding CF and all that it means.
A few weeks back Hannah and I had a mommy daughter talk and it hit her. For the first time she articulated to me her understanding of what CF was and that there was no cure. It was heartbreaking for this momma to see those lights go off in my 9 year olds head and see her little heart break.
At Christmas Hannah wrote a letter to Santa. I didn't know she was going to do this and as I picked it up to read it, I began to read it out loud to Dave and my dad. As I got to the end I literally had my breath taken from me. As I choked out the end, I couldn't help but cry.
Here is an excerpt from the end of her letter...

"Oh and Santa one last thing, all I want for Christmas is my brother to get well, you know with CF and all, I really love him, and want to find a cure, could you do that for me? Love, Hannah".

Heartbreaking and so sweet.

The next morning on Christmas day, the excitement of it all, I had forgotten all about that and we were opening stockings. After we were done, we went to eat breakfast and wait on my sister and her family to come to open gifts. Hannah was visibly upset and distracted. I asked her what was wrong. She asked if there were anymore gifts from Santa or if the stockings were it. I told her that was it from Santa and the rest were from family.
Her head sunk down and tears filled her eyes.
What's wrong Hannah, I asked.
She replied, There was no cure.
What? I said.
She said, Mom, I asked Santa for a cure for CF. I thought one of those gifts in there was big enough for a bottle with a cure, but when I opened it, it was something else. I just really wanted a cure.

What do you say to that? I teared up and gave her a hug. We talked about praying, we talked about Santa and his role and our belief in God. We talked about hope. We cried together on Christmas morning.

The rest of the day was tainted with sadness as I realized the one thing our family needed most could not be bought and wouldn't' be under the Christmas tree. There was nothing I could do and nothing else mattered.
It was a bittersweet day as I watched my little girl disappear and instead in her place was a sister who finally knew. Heartbreaking for this momma.

I am not sure I ever thought about how she would process this. I knew how Dave and I processed it. The steps of grieving we went through. I have watched Kaleb process and deal with it, but somehow, I overlooked the other sweet, sweet soul in this journey.

I hate it. It is so horrible to watch her deal with this. She should never have to go through this, not at this age. She should be thinking about sleepovers and toys, clothes and shoes. She should be worried about her homework...not if her brother will live.

It has brought our family closer, but we are all so hurt. It is so painful. Dave and I try to put on a brave face for the kids and encourage them and give them hope, but we ourselves are struggling so it is hard to push through for them.

And so we cry as a family and we hug each other tight. We appreciate the little things that others might take for granted. We hang on to each moment we get and thank God for every day that passes. We pray desperately for a cure and do all we can to take care of our boy and raise money for a cure. We cling to each other and help each other through....we continue down this road and hold tight for the next bump or curve in the road.

Happy 11th Kaleb

2011-12-16T13:46:00.000-08:00

Kaleb's classmates at the movies for his friend party. We saw Muppets, it was hysterical. We had a great week celebrating Kaleb and it isn't over! We had a friend party last Sunday, then Thursday (his actual birthday) we did presents and lunch and cupcakes, tonight Kaleb has his super good friend Joe over to spend the night and we are going to Outback for his traditional birthday dinner, and on Sunday we are doing a family party with Dave's side. To top it all off, we raised over $2,800 in less than a day for the Cystic Fibrosis Foundation and Team Kaleb! What a wonderful tribute to our wonderfully brave boy! Thank you to everyone who wished Kaleb a happy birthday on fb, cards, email, at school, and through donating money for our $11 challenge. We are blessed!

Blogger Challege and $11 Birthday Challenge

2011-12-13T07:47:00.000-08:00

Why I fight for a Cure....
I am doing Piper's blogger challenge for Emily. You can get to Piper's blog here and Emily's website here.

The reason why I fight for a cure and did the $11 Birthday Challenge is for Kaleb. If you know me, you know finding a cure, raising money for a cure, and spreading awareness is my passion. I am so inspired by people like Piper and Emily who are spreading awareness and supporting each other in their fight against CF. Piper and Emily both have CF themselves.

Thank you to everyone who donated or pledged to donate to Kaleb's 11th birthday $11 challenge. We had a modest goal of raising $1100 by Thursday when I set out to do this with Kaleb's blessing on Monday morning. By 10pm on Monday night we had surpassed our goal and had an anonymous donor pledge to MATCH our $1100 if we hit our goal. Well, we hit it. No, we BLEW that goal out of the water and off the planet. We KICKED some CF booty for sure! As of right now, the donations are still rolling in. I am blessed beyond words and my tears and rolling down my cheeks! THANK YOU!! You can still donate on this link if you want, all money goes to the CFF via TEAM KALEB. We are raising money for the CF Walk in May.

http://www.cff.org/Great_Strides/Kristianneristiowers

Our total so far?? $2,776....um, excuse me?? YES, that is right. WAY over our goal!! I am so excited.
This morning when Kaleb woke up I told him we totally rocked his goal and he said "wow, people are really nice and all those people care about me?". Oh Kaleb, you have no idea how much :)

Want to be apart of the challenge? Follow these rules from Piper:

1) View Emily's amazing video here, then consider making a donation of your own or "liking" her page on FB (neither is required, but both are encouraged!).
2) Create your own blog post, FB status update, or other form of social networking tool (letter, email, whatever). In the body of the message, place a small paragraph of why YOU fight for a cure for cystic fibrosis and why this cause matters to YOU. This can be your CF story, your wish for the holidays, your version of community -- whatever.
3) Link to Emily's Entourage Website and encourage your own readers to take up the challenge.
4) Comment back here with a link to your blog a message about how you shared this vision for an automatic entry into a drawing for a very special CF/transplant-awareness prize package, including gifts from iheartguts.com, apparel, and other fun goodies! (on Piper's blog)
5) Re-post these rules on your own page.

Thank you for your support of CF, raising money for a cure, and my son KALEB!! The reason why I do it!

The $11 Challenge

2011-12-12T10:11:00.000-08:00

I am looking for 100 people to donate $11 each to raise $1100 by Thursday for Kaleb's 11th birthday!! Comment below if you will donate and how many $11 slots you want. I know we can do this! You can click on this link and donate securely with credit card straight to Team Kaleb (I have already done it, very easy) or bring or mail me a check written to CFF and I will turn it in to our local chapter. Just tell me if you are doing that so I can keep track!! We have 4 days, but I know we can do it! Just $11!!

This link for credit card donations

http://www.cff.org/Great_Strides/Kristianneristiowers

I started this challenge on facebook this morning and a few hours later we have already hit 25% of our goal!! We only need 76 more sponsors at $11 each to hit our goal by Thursday. Comment below if you can help and how many slots or message or text me!!

Let's make Kaleb's 11th birthday awesome by raising money for a CURE!!

EDIT: Only 68 more sponsors needed at $11 each!!

Congratulations David!

2011-12-11T19:30:00.001-08:00

Patterns
Breaking boards
My cute 5th degree husband
Master Hammons (7th degree and Dave's instructor), Dave, Guest judge Master Bishop- 7th degree

Congratulations to my husband for getting his 5th degree this weekend! After 20 years in Tae Kwon Do, this is a great accomplishment. He has been fortunate to have the same instructor for those years as well. Great job Dave!

Random...

2011-12-08T08:39:00.000-08:00

Speaking to the Make A Wish volunteers was awesome and I was asked back to speak again at the spring training. I am very excited and blessed to have these opportunities...
I am also going to go through some training to be able to speak on behalf of the Make A Wish foundation at events, fundraisers, businesses, etc. If you have never donated or had anything to do with Make A Wish, I suggest you research it. They are a wonderful Foundation that grants wishes to kids with life threatening medical conditions. Kaleb experienced his wish last summer and it was absolutely wonderful. It takes an average of $7,000 per wish, so a lot of money and time go into these wishes.

I have been a bit discouraged lately about the way that CF moms have been treating each other on the boards. A lot of lashing out, a lot of misdirected anger, lots of opinions and judgement. It is all so sad. We are all supposed to be on the same team yet instead women are taking things out on each other. So much drama. I am staying clear of that as much as possible. I think we forget sometimes that although there are similarities with the disease we are each responsible for our own children and just like parenting there will be different opinions and ways of doing things. I wish people who take a step back and think before they post. Facebook and blogs give people a false sense of confidence...there are still real people with real feelings behind those things and when you spout off something, you can't take it back and real people get their real feelings hurt.

Kaleb and Hannah started Upwards last week. They have a few practices this month and a scrimmage at the end and then games start in January. I hope they both have fun and learn a lot. I also hope Kaleb can stay healthy enough to play the whole season and that his lung function can stay the same or get better. He has dropped quite a bit lately and it has settled in the mid 60's with no active infection which worries me. We have an appointment next week and we will see how he is doing. He has his normal colonized pseudomonas but the growth is mild right now. I was hoping for some sort of explanation for the low pft's other than progression of the disease.

We will be in Cali for Christmas and Dave's birthday. We will be there the 20-29th, a little shorter than normal, but we are so excited! I love Christmas visits becuase we just hang with family and eat. It. Is. AWESOME.

Dave is testing for his 5th degree black belt in TKD tomorrow night. I am very proud of him for continuing to train despite all the obstacles in his way. Kaleb's CF, taking classes for his Doctorate, 2 broken feet in the last year, and all the craziness of our lives and still he has worked hard and is ready. Can't wait to see it! It will be a long testing (3-4 hours) but I got a sitter and I can go, so I am excited. I saw him test for his 3rd right after we got married but missed his 4th because we had young babies.

Tonight is the kids Christmas play at school. Hannah has some lines and a solo. Kaleb is not looking forward to it as this is not his thing. He is happy that starting next year he doesn't have to do it anymore. Oh how my children differ.

Looking forward to Christmas break, just a little over one week left....

Something Good....

2011-11-30T06:58:00.001-08:00

Since Kaleb's diagnosis I have been praying for God to use our journey for His glory. There are times where I don't feel like talking about it or I feel so overwhelmed with day to day that all I can see is one step in front of me. The last few years I have worked through a lot as a person. I came out of a period of depression and I was able to change my priorities, my thinking, the way I saw CF and our journey. Just within the last year I have started to feel like I am no longer drowning and that it seems (to me at least) that there is more time between those moments of deep despair. I feel like I have my footing.
Just recently God has presented to me several opportunities to share our story. In person, on my blog, in chapel, on the radio, and tomorrow I will be speaking to Make A Wish volunteers at a training and in January I will be speaking to a group raising money for CF. I go back and forth with this. It is my insecurity and how easily I get emotional about Kaleb's CF. I can either be very clinical and medical (which comes across a bit like it doesn't bother us) or I am a basket case of tears. It is hard to stand in front of people and open up your life, your emotions, your journey. It makes you vulnerable and it is also difficult to make sure I am getting my point across in between tears and sniffles. Whenever I share, I am always glad I did. I never regret it. But I still get nervous and I still worry about it coming across in the right way. But I am convinced that something positive will happen from Kaleb's CF and our journey. I know God can use it for His glory.
I continue to pray for opportunities to share and that I will not get in the way of what HE wants to be shared. I feel blessed that I have had chances up to this point and I cannot wait to see where this journey takes our family. I feel very strongly that this is what we are supposed to be doing. God can be glorified even in the midst of sadness, despair, unmet expectations, and tragedy.
Join me in prayer for our family and our journey, whatever shape it may take.
Please pray for me today as I am speaking in chapel over Job and how we respond to trials in our lives and please pray for me tomorrow as I speak to the Make A Wish volunteers.

Last Chance!

2011-11-28T16:51:00.001-08:00

The Pampered Chef fundraiser ends on WEDNESDAY!!
If anyone would like to help out a great cause and raise money for TEAM KALEB and the Cystic Fibrosis Foundation, and to help find a cure, please go to

www.pamperedchef.biz/Jodicook4u.

Click on "Our Products" Tab, then click on "how to purchase" tab. In the blue box where it says search for a host, type in Cystic Fibrosis Foundation, and search for host tab.You should be directed to a link that says Cystic Fibrosis Foundation, Kristi Bowers.
Click on that and feel free to shop. If it asks you for a code, please enter G3R2

TEAM KALEB and the CFF gets 15% and every little bit helps!! Perfect ideas for Christmas gifts and you will get your stuff before Christmas!!
ANYONE can order online, it is so easy and it can ship right to you!! If you are local, I can bring it to you or you can ship to your house!!

Thanks for your support!

A healing Thanksgiving....

2011-11-27T19:02:00.000-08:00

I had a great Thanksgiving...we were able to go to Texas and be with my cousin Joel and his wife Nickie and their two ADORABLE kiddos Emeri and Evan. We had such a great time catching up, watching the kids play, walk around the pond, go to the fire station for Thanksgiving, and talk....
sometimes I forget what our story sounds like. It has been so long and sometimes so far between since I have talked about it out loud. I write about it, I will give little tid bits here and there...but to sit and think about certain moments in our history and then speak them out loud....well, it has been a while.
Joel and Nickie have such a genuine and loving heart for those around them. They always ask about Kaleb and our lives but we don't get time to sit and talk with them very much. I forget how sad our story can be, I don't mean that in a pity party way, I just mean, recanting it out loud and seeing tear filled eyes reminds me that hearing our 3 month old has CF was heartbreaking and devastating. I have to remind myself to not be so clinical and medical. But when I stop doing that I get emotional, it hurts. Spending hours talking with them late about our lives, our struggles, our pain, our growth, and our trust in the Lord was such a blessing to me. Not many ask how we are and when they do, sometimes, I don't think they realize what they were in for and so we edit. I don't mean that in a bad way, people ask, but I am not always up for explaining it all or sometimes I can tell they aren't up for it. But it was so good for David and I to reflect on our journey so far and see the areas we have struggled, the areas we have grown, the areas that can encourage others, the areas that have caused so much hurt, and the areas we are healing. This trip was so good for us in so many ways. We took an adventure that was a bit out of our comfort zone with Kaleb, we enjoyed ourselves, we relaxed, we got good quality time with each other, the kids, and our family and we were able to reflect through sharing with others how awesome our God is and how He has carried us this far...
This Thanksgiving was a healing one for us. It meant so much just to get in a car and go. To watch the kids have joy as they jumped on the blow up bed. To share a meal at a fire station and see where my cousin thrives in his job. To stay up way to late and drink way to much coffee and to open up our lives and share the good and the bad. To connect with family and to hold and cuddle babies. This Thanksgiving I was reminded not of the things we don't have. Not of those limitations or those obstacles...instead, I was reminded of all we do have and to cherish every moment.

Kaleb is on the RADIO!!

2011-11-16T07:09:00.000-08:00

A few months ago we were contacted to come to a local radio station and interview about CF and The Make A Wish Foundation and Kaleb's Make A Wish trip this last summer. The next few days this station, KRMG, and The Make A Wish Foundation Tulsa/Oklahoma chapter are partnering to raise money for Make A Wish. The average wish costs $7,000 and they are raising funds to be able to keep granting wishes. Clink on one of the options below to hear our story!!

Click HERE
or if that doesn't work the link here:

http://www.krmg.com/Player/101149651/

OR go to www.krmg.com and once you get to the main page look for the Make A Wish logo on the page and click on it. Once you do that it will bring up a page with a list of names. Look for KALEB BOWERS and click on it and it will bring up his story (audio only, it is for radio).

Order Pampered Chef for CF!

2011-11-11T17:16:00.000-08:00

I am currently doing a Pampered Chef fundraiser for Cystic Fibrosis for the month of November. If anyone would like to help out a great cause and raise money for TEAM KALEB and the Cystic Fibrosis Foundation, and to help find a cure, please go to www.pamperedchef.biz/Jodicook4u.

Click on "Our Products" Tab, then click on "how to purchase" tab. In the blue box where it says search for a host, type in Cystic Fibrosis Foundation, and search for host tab.You should be directed to a link that says Cystic Fibrosis Foundation, Kristi Bowers.

Click on that and feel free to shop. If it asks you for a code, please enter G3R2

TEAM KALEB and the CFF gets 15% and every little bit helps!! You can shop for yourself or get some Christmas shopping done! My favorite is the pizza stone!!
ANYONE can order online, it is so easy and it can ship right to you!! If you are local, I can bring it to you or you can ship to your house!!

Thanks for your support!

Follow up to PTSD CF Caretakers Study

2011-11-09T06:58:00.000-08:00

After reading the PTSD study I posted on my blog yesterday, I came across this speech on the CF mom boards. This is in response to this same study and references it. I connected with this speech because the writer is a CF mom herself and she spoke on behalf of us CF Caretakers at the recent National CF Conference held in California last week. When I read this I thought, YES!! Exactly! She put it perfectly. It resonated with me and some of my feelings. It is long, but it puts some issues into very well spoken words. It is worth the read.

The Unspoken Concern: ... PTSD experiences in a post-diagnosis household

By Heather L. Walter, PhD.

Director of Graduate Studies and Associate Professor

The School of Communication

The University of Akron

Akron, OH 44325-1003

About a year ago, I was perusing medical journals (you know, for fun) and I came across the Invisible Patient: post traumatic stress disorder in parents of individuals with Cystic Fibrosis article. I read the article twice and then I just sat there. I was amazed because suddenly there was clarity. All of the feelings that had swarmed my head in the five years since my daughter’s diagnosis were suddenly “normal”. I wasn’t alone, in fact I fell in with approximately 63% of the other parents of children with CF who experienced some amount of post traumatic stress symptoms since diagnosis.

So I made copies of the article and started reaching out to the online and in-person friends I had who were also parents of children with CF. Some of my friends didn’t understand the statistics of the article, but when we discussed the results, I saw genuine tears in some of their eyes. They weren’t alone either. The article started resonating in all of our heads and we were, collectively, beginning to see that CF was NOT just an illness our children suffered from or were diagnosed with or were fighting…..it was a family process, and we – the parents, the caregivers – were, as the article was so aptly titled, the “invisible patients.” Ours was an unspoken concern, because we didn’t know we were allowed to be the patient while we were trying so hard to be the strong parents for our kids.

Post-Diagnosis

Five years ago, after my daughter was born, she was whisked away from me to be taken to another hospital to manage a meconium illeus. As I sat in my hospital room, recovering from a c-section and unable to travel across town to the Children’s Hospital, I learned about the possibility of Cystic Fibrosis, a disease I had never really learned much about. When I asked the surgeon who called to discuss CF with me the prognosis of the disease, she casually spouted, “Oh those kids are living into their twenties these days,” as if this was good news and a point I should be thrilled about. Four months and many confusing tests later and we were given positive confirmation that my daughter has CF.

Being told that your child has cystic fibrosis is never easy. There are so many adjustments that need to be made to your life as you begin to wrap their head around a diagnosis like this. In the early days, I remember thinking that I was feeling like someone pushed me off a plane in some foreign nation, like Japan, without a guide book or a translation dictionary. I was standing still watching everything go on around me and I understood only a small fraction of what it all meant.

Despite the warnings of my daughter’s CF team who told me the internet held a lot of outdated and inaccurate information, I sped off to the online-forums in dire need of some translation. And over time, I adjusted. We all adjust. You learn the language of the land and the landscape, you accept the hours of treatments, you learn strategies for getting an 8 month old to take a nebulizer treatment or a 15-month old to swallow pills. You create a new normal, and the “Japanese” that sounded like gobblety gook, starts to be a part of your vocabulary.

And just as quickly as you learn how to spell and pronounce pseudomonas, you start to witness people in the CF community around you die. The positive exciting news about better treatments and possible cures are mitigated by the harsh reality of those that are at the end stages of this disease. The end stages seem so far away when you have a newly diagnosed infant, but for that matter so do the cures. And with the introduction of each new treatment, each hospitalization, each new medicine, and each CF death you learn about. . . the wounds re-open.

Post-Traumatic Stress Symptom Clusters

The PTSD articles I’ve read talk a lot about the symptoms clusters of re-experiencing, avoidance, and arousal; so I wanted to take a few minutes to discuss each of these categories of symptoms as they related to the CF parents existence.

Re-experiencing

Let’s start with re-experiencing. Re-experiencing is a cluster of symptoms in PTSD that involve reliving the traumatic events that led to the PTSD. The re-experiencing can occur through intrusive recollections, nightmares, flashbacks or various forms of psychological distress and reactions.

In the invisible patient article, 62.9% of the sample indicated some re-experiencing symptoms, with the highest occurrence of symptoms being intrusive recollections and psychological distress. When I think about these results, my mind says, “of course”!!!!

PTSD in a CF caregiver isn’t the result of one traumatic moment in time, it’s an ongoing constant. Ever hold your own 3 year old down for bloodwork or a shot, and think, “wow, this is fun”? But what about holding a 3 year old down, kicking and screaming, for FREQUENT bloodwork, daily aerosols, daily airway clearance, daily medicines, regular doctor visits?? The list goes on. During a PICC line change less than a year ago, my usually very calm, well behaved, okay PERFECT, daughter practically pummeled the CF nurses she adores. She does not like being held down, and the poor thing gets held down a lot.

And while one instance of holding a child down against their will does not elevate to the level of long term traumatic event, doing so over and over merely serves as a reminder to the cruelty of this disease and the balance of forcing our children to do something they despise, for the larger good of their health. Holding them down is bad, but CF is worse. And we CF parents know this, and it is what allows us to allow our children to be tortured in this way . . .and it sticks in our brains to remind us what it all means.

I don’t wake up in a cold sweat in post-war movie style examples of PTSD, but I do relive and re-experience all sorts of traumatic happenings around CF all the time. And they can’t be brushed off with a nice little, “well at least it is over now” because I know what the potential future can be with this disease.

Avoidance

The second cluster of PTSD symptoms, are avoidance symptoms. Avoidance includes cognitively selecting to ignore information, behavioral avoidance, amnesia, diminishment of interest and feelings of detachment and emotional numbing. In the invisible patient article, only 11% of the CF caregivers reported avoidance symptoms and largely this was attributed to the cognitive avoidance rather than any of the other forms.

The authors highlighted TWO rationales for this finding:

FIRST they discussed that the self selective nature of volunteering for a study might have actually worked against the study, in that those parents who were experiencing avoiding symptoms would avoid volunteering for this study, as an extension of that symptom.

I shared an earlier version of this speech with my husband a few days ago. When I finished he told me I would have to read it one more time because he got distracted halfway through thinking about which of these PTSD symptoms he most resembled. He then suggested that the results of the avoidance area must be grossly underrepresented. He agreed that in his own attempt to avoid some of the future realities of the disease that he would not be found researching online about transplant or end-of-life issues, nor would he volunteer for a CF study on PTSD.

SECOND the article discussed that unlike other types of traumatic events where it is a moment or repeated moments in someone’s earlier life, this form of PTSD comes in the midst of regularly reoccurring episodes and daily routine care and as the primary caregiver we do not have the luxury of avoidance.

I think both of these arguments are valid, but I think the second one holds a large resemblance for me and to what I see in my friends that also have kids with CF. Our children can avoid wrapping their brain fully around this disease and its implications, but most of us parents just can’t.

Several years ago, my daughter had a tough couple of months. She was hospitalized with an exacerbation and then hospitalized again to place a feeding tube. Over the course of several weeks, we also had 4 ER visits as well. At our follow up visit with the surgeon, she noticed the room held only a chair and an exam table. She touched the table and asked, “If this is where I sleep mommy, where are you going to sleep?” She was not quite 3 at the time, and hospitals were her “normal”. For me, I wanted to avoid the reality of hospitals being her norm, but it was too in my face to be able to be normalized.

We, parents, certainly may have days or weeks or even months where we push the disease to the back of our minds and make conscious or subconscious choices to cognitively avoid the reality of it all. We build a life separate from CF for our kids. . . but these are usually the healthy days. We can somewhat normalize treatments, and medicines, and frequent doctors visits, but eventually we hit a moment that brings the mental blockade we’ve erected to protect us crashing down.

For some it’s the decision to place a feeding tube, or working with teachers to make sure our child gets the calories or medicines they need…..other times it’s the hospitalization, picc line, endless antibiotics, or the dropping numbers during regular pulmonary function testing.

Avoidance and denial are nice places to visit, but you can’t stay there forever.

Arousal

The final cluster of PTSD symptoms is the Arousal ones. Arousal symptoms represent the hyper alertness that occurs post trauma and include irritability, insomnia and hyper-vigilance. Like with the re-experiencing cluster, 62.9% of parents in the invisible patient article reported symptoms in the arousal cluster. . . and a whopping 71 percent of them reported arousal related to hyper-vigilance.

Hyper-vigilance. HA! NO KIDDING??!! So there is a word that explains a CF parents need to turn “Purell” into a verb? As in, “did you purell her hands, yet again, since she just ____________?” You can insert anything you want into that blank. Since she just touched a frog, since she just hugged grandma, since she just got home from school. Purell is the CF parent’s tool to avoid the dreaded germ.

When our kids are diagnosed we are given a set of tools. We are told to keep those healthy lungs healthy….avoid illness….follow good hygiene, do treatments, follow protocol. The rest of the things we hear about CF are totally out of our control. We can’t control the rate of progression that this disease takes, or the pseudomonas hiding out in her lower left lobe. But we can keep those kids “purelled”. We can make sure treatments aren’t missed. We can follow protocol. And most of us try to . . . to a fault.

Read the newly diagnosed boards on some of the online CF forums, you can see it, this hyper-vigilance. “Should I take my 1 year old to my cousins house” “Is it okay to send him to preschool” “What do I do, we missed a treatment”??? The questions go on and on . . . because we are scared . . . because we can’t control much . . . because we desperately don’t want to lose our children to this disease.

So the fact that nearly two thirds of those studied reported hyper-vigilant tendencies doesn’t surprise me one bit. We ARE hyper-vigilant and most of us aren’t even sorry about it. When we aren’t or we drop our guard for a moment (probably when the short term cognitive avoidance sets in) we also become plagued with incredible guilt for not being hyper-vigilant enough.

In Conclusion

As I conclude, let me touch on a few summaries for the CF care team members to remember as you interact with the families that are an extension to your CF patients.

Parents with kids with CF DO spend time re-experiencing, reliving, having nightmares, focusing on what might happen….how can we not? We live and re-live not just the actual day of diagnosis, but also the growing knowledge of what is likely to come.

And we parents learn to avoid the cognitive truths in order to live, even if we can’t avoid the reality of the disease itself. Sometimes, usually the healthy times, we try to sink deep into normal. But CF rears its head at the most inopportune and unlikely times. It creeps in as we are planning a vacation and our child suddenly develops a bowel obstruction, or two weeks before school starts the cough get worse and we know a hospitalization is looming. So perhaps we can’t really avoid CF, some of us do it better than others – we forget, we play mind tricks, we redirect our energies, but we still have to face CF head on with treatments for 2 or more hours every single day.

And we experience arousal symptoms. Many of us are conscious that we have become hyper aware and hyper vigilant in our care for our children, in our hopes to control whatever small amount of the disease that we CAN control. In so many ways, Hyper-vigilance is synonymous with so many CF parents.

Some days the hyper-vigilance, avoidance, and re-experiencing makes us fragile and easily wounded. Perhaps we are the invisible patient who also needs a little medical TLC. And other days, these symptoms are what can make us the most powerful ally to the CF care team – today I serve as a parent mentor for our hospital, as a member of the CF Family Advisory council, I edit the Current Features newsletter, and most importantly try to be the most powerful advocate for my children. We KNOW what we have to lose, and with the help and direction from those who care for our children, we can channel these symptoms of post traumatic stress into healthy coping mechanisms to support our children and help them thrive.

Heather Rosenfeld Walter's speech from the NACFC

* for a panel on the existence of post traumatic stress disorder in parents of CF children.

_________

THOUGHTS??

Interesting CF Caretaker Study

2011-11-08T07:27:00.000-08:00

Click HERE to read an interesting study regarding CF Caretakers and Post Traumatic Stress Disorder. I found this very interesting as a caretaker myself. It explains a lot and I hope they do more studies in the future.

Raising money and kickin' some CF booty....

2011-11-05T11:16:00.001-07:00

I am determined to raise a lot of money this year to find a cure for CF. It isn't an amount I am aiming for, it is my effort level. Usually I just ask for straight donations. Well, that doesn't hit everyone. So, this year, I am offering so many different ways to help there is bound to be one that you would want to participate in!!

Just right now we are selling $5 singed beauty purple hair flowers that clip in a girls hair. PERFECT gifts for Christmas or just because. All of Kaleb's girl classmates are getting them. We have already sold over 20 and $4 from each bow goes straight to TEAM KALEB and the Cystic Fibrosis Foundation. We will sell these from now until May. They are available from me, Gracy Girl Bowtique (see her facebook page or the link in the post below), or comment on my blog. If you live out of town, you just have to pay for shipping.

We also have a Pampered Chef fundraiser open the whole month of NOVEMBER. See the info below and link to order. Ordering is so easy online and you can have it shipped right to your door or if you are local to me and I will pass it out to you!! 15% will go to the CF Foundation under TEAM KALEB!! You can order from me and a catalog or simply click this link and then go to SHOP ONLINE on the top right. Then put in Cystic Fibrosis Foundation under organization and Kristi Bowers for host and BAM you can start shopping for yourself, or friends, or christmas!! Thanks guys!!

www.pamperedchef.biz/Jodicook4u

Some more items in the works....
-Arbonne Catalog party where we get 35% of all products sold (this will be ongoing, so if you want anything let me know. Protein powder (I use this), women's vitamins (I use these), 7 day cleanse, make-up, protein shakes (Dave drinks them), TONS of stuff.
-Scentsy party after the first of the year
-Tupperware party in March
-Singed beauty flower clips on sale now til May
-Pampered Chef this month
-Working on a BUNCO FOR A CURE party
-Working on Volleyball Clinic or Camp for a Cure in the Spring
-Straight donations to TEAM KALEB on our CFF website (we already have $200!) anytime from now until May (see the CFF Great Strides button to the right top of my blog)
-Collecting CHANGE for a Cure
-Team Kaleb bracelets for sale
-Team Kaleb t-shirts for sale

LOTS of ways to help us raise $$$$ for a cure! If you have seen the news you know that CF has been in it! They have a new drug fast tracked to the FDA that will help one mutation A TON! They are working on one for Kaleb's mutation too and these funds will help that!!

Thanks for your support guys!!

Order a purple bow/flower...RAISE money for CF!!

2011-11-03T07:27:00.000-07:00

My friend Kim has a little business called Gracy Girl Bowtique and she sells cute girly hair bows and flowers from home, her fb page, and On the Corner Gifts in Broken Arrow. Click HERE to go to her facebook page and "like" her page. While you are there you can write on her wall and order a CF bow as pictured above for just $5 (plus shipping if you are not local). $4 from each sale goes to the CFF and Team Kaleb 2012!! If you want to order through me I am coming to California in December and I can bring it or I can ship it to you through my sister or mom. So, you can order through me (especially if you are local, I will have some on hand too) or from Gracy Girl Bowtique on FB. Just let me know!! This is a great way to make money for CF and get some cute stuff! I ordered one for Hannah, my niece Tessa, and my cousin Lily! Just in case you didn't know....PURPLE is the color for CF!

Keep your eyes peeled for my link to my Pampered Chef show we are doing from now til November 30 where proceeds go to TEAM KALEB and CF too!!!

Post it's, Lists, and Check Marks...That's How I Roll...

2011-11-01T11:29:00.000-07:00

If you came into my office you would see two things right off the bat. A list on my desk on a pad of paper with check marks and scratches through items and post it notes covering my desk.
This is how I function. Call it OCD, call it controlling, call it organized. Whatever it is, it gets me through my life.
Sometimes, I make a list or post it, just to mark it off. The item could already be done, but I put it on my list so I can check it off to feel like I actually did something.
I derive immense satisfaction from being able to crunch up a post it and throw it away after that task is completed. I even have a post it type app on my phone that allows me to jot notes and lists and check them off. When my calendar on my phone goes off and I am reminded to do something, I have to delete it the second it is complete.
Neurotic, maybe....but I am known to get things done. If you need something done and done well, people know to ask me because I will stay focused on it until completion so I can cross it off, check it off, crunch up that post it and head to the next "to do".
I am also very goal and task oriented and I do like routine. I struggle a bit with my new job because it is different all the time and I have to establish my own routines. I am not run by bells and classes flowing in and out giving me timelines. I love projects and tasks given to me and I function according to getting those things done.
Just a little random info to share, you know, cuz that's how I roll....

Following up...

2011-10-31T06:56:00.000-07:00

As a follow up to my post yesterday on Translating Joy, let me very clear that although I can write about those things, it definitely doesn't mean I have it down. It is a struggle. Daily.
Sometimes, there are things you know logically and intellectually, but it is much different to actually do it.
I do think that when we go through things it helps to share those struggles. Both for myself and for others that may be going through similar things. I can only hope my words can be an encouragement to others.
I do know deep down how to live in a state of joy. Inner peace and that confidence to know that because I know the Lord, it will work out. It is working out. It may not be easy, it isn't easy :) It can be difficult...but I have that peace that we are being taken care of.

Translating Joy...

2011-10-30T14:15:00.001-07:00

We had an interesting discussion today in Sunday school that sparked my thinking. It was a tangent really, it actually had nothing to do with what our topic was.
How can one have joy despite circumstances and in the midst of unhappiness? Take out all of the Sunday school answers and think about it. Don't just say, be happy. Or with prayer you can be content. Or even just have joy. It isn't that simple. It isn't even something that one who has that joy can explain. If it was, then it would be easier to have, to keep, to do.
Joy by definition is: the emotion evoked by well-being, success, or good fortune or by the prospect of possessing what one desires : delight.
But this is the worldly definition that is closely associated with the emotion of happiness.
In the Christian circles, joy and happiness are much different.
For instance, let’s look at a Biblical definition of joy. Joy is defined as the happy state that results from knowing and serving God. The words joy, joyous, and rejoicing are found over 200 times in the Bible. There are many circumstances in the Bible of suffering and pain and at the same time associated with joy. How can we choose joy in circumstances that would derive anything but happiness or a happy state? It seems by definition that because we know and serve God we should have joy in us no matter what our circumstances. In this case, joy would seem to be less of an emotion and more of a state of being as stated in the definition.
So, despite sickness and illness. Despite difficult circumstance and loss. Despite hardship and pain. If we know and serve God, we can have joy. Not a rush of emotion, not that high of happiness and that feeling we get when something goes our way. Not an emotion as stated in the worldly definition, but instead a state of being. Who we are. Content. In a place of joy. Knowing we serve and know God.
When I think of this it makes me think of another word entirely. Peace.
Despite our circumstances, despite all that is going on, we can have joy that translates to peace knowing that no matter what happens to us or at us or in us. No matter what, we can be filled with joy knowing we serve and know God and that....THAT... should allow us to be filled with peace and JOY.
And because of this fact we know....
that we can be sad and have joy.
that we can be hurt and have joy.
that we can suffer and have joy.
that we can experience loss and have joy.
that we can have anxiety and have joy.
that we can battle depression and have joy.
that we can not understand why and have joy....

...and all of that allows me to feel that peace and all of that gives me hope.

Kaleb is my hero.

2011-10-17T17:39:00.000-07:00

There are many times, many, many, times that I feel like I cannot do this. I cannot face all there is to face as a CF mom. It is so hard. It really is. No one wants to hear the details because it isn't pretty. It is so hard. I try not to think about it because when I do, it overwhelms me.
I know other CF families get it and we all deal with varying degrees of it depending on what stage we are in.
I'll admit it, I feel sorry for myself. Sometimes, I just can't help but ask, or cry, or scream...why me?
But then that cute little face comes over to me and hugs me...just because. He loves me and hugs me and needs me. He needs me to face this. He needs me to be strong. He needs me to not feel sorry for myself....
He is my hero. He faces so much everyday. Things no 10 year old should ever, ever, ever have to deal with. He deals with pain, loneliness, sadness, the emotional and physical trauma. Hospitals, doctors, nurses, g-tube, IV's, port, missing school, cramming in his missing homework and tests, trying to deal with other 10 year olds that may not get it, feeling different and weird, being hooked up to machines every day and night....so many things he has to deal with.
And he cries, he asks why, he asks the hard questions...but he is also brave, and tough, and he does all of his meds and treatments everyday, he reminds me when I forget, he comforts me when I am sad, he reminds me our strength is in the Lord. He has such faith, such deep, deep, and unwavering faith. He doesn't understand it all but he knows God is there and taking care of us.
And so I am reminded to find our strength in the Lord and I am reminded that I must push on because of him. My strong, strong, boy needs me.

Trusting your gut and God....

2011-10-12T20:55:00.000-07:00

Whenever we make a decision regarding Kaleb I always second guess myself. Saturday morning when Kaleb's fever had spiked to 104.5, I knew something wasn't right. I wanted to ignore it and push it away for several reasons. Selfishly, I had our state tournament that day and I didn't want to miss coaching. We had also JUST been in the hospital in July/August and I was not ready to ride that train again. After praying and thinking it through, I knew I had to consult his doctor. Together, the decision was made to admit.
It was one of the hardest things I have had to do because I knew my boy was sick and I was nervous for what it was. Dave had to leave his doctorate class on his final day, I had to call my assistant and AD and tell them I couldn't be at the state tournament that we also happen to be hosting. What if it turned out to be nothing? That is a lot of pressure. David and I (along with the doc's) have always leaned towards more conservative and we always put Kaleb's lungs and permanent damage first. We couldn't risk that.
After being here and none of the tests showing anything, I was getting frustrated. His x-ray looked good. Maybe some bronchitis but nothing bad. He continued to fever, he acted sick, tired, loss of appetite, increased cough, but everything was negative. We aggressively treated him anyways. Doc always says, the tests can be wrong, we treat the symptoms. So with 3 heavy duty IV antibiotics we started hammering away at the mystery fever. We also found out his g-tube was infected with staph and yeast. I was glad we caught that because it causes him pain and can lead to worse infections down the road.
Since his fever has been gone for almost 48 hours, I really started pushing to go home. I hate being here, I have one more tournament to end the season Thursday-Saturday, I was scared he would catch something else here, and I know he would rest and eat better at home.
Tonight, Dr. Carey called me in to look at the lab report. His lungs showed HEAVY acute moraxella (community acquired), moderate staph and moderate pseudomonas (both the sensitive kind). All 3 respond to the IV's he is on. Praise God. Dr. Carey looked at me and said, I am so glad you brought him in. If we would have treated him at home with oral antibiotics, he likely would still have fever and probably would have spiraled into a severe pneumonia. You would have been looking at a long hospitalization with permanent lung damage. I took a deep breath. Thank you mommy intuition and thank you God for the wisdom to call the doctor.
We likely caught the growth and infection within hours/days of it taking over his lungs and immediately began treatment on Saturday. If it weren't for the fever, we wouldn't have known and it would have set in.
Kaleb gets to go home tomorrow and rest and recover. Dave and Hannah are on Fall break so they get to chill at home with him too. I get to go to my last tournament (thank you best hubby ever who is doing IV's at home by himself for 2-3 days) and finish my season with my team and say goodbye to my seniors. We will do IV's until the 21st (just in time for Hannah's birthday!) and our boy will start feeling better very soon.
I am glad that I listened to my mommy intuition and my gut. I am glad that God was able to guide me and the docs to make this decision and I think I will try to stop second guessing myself from now on ;)

Raising money for a Cure!

2011-10-12T15:16:00.001-07:00

In 2 weeks my Uncle Bruce is riding in a bike race for a cure in San Diego California. This is a CF event sponsored through the CFF! I have already donated and every little bit helps. Click on the link below to donate straight to his page on the CFF. He wants to raise $1,000 for a cure and for Kaleb!! Can you help us out? Click HERE to donate....

Thanks!
~Kristi

Weird....

2011-10-12T08:13:00.000-07:00

This has been such a weird and abnormal hospitalization. Typically CF'ers don't get fevers. When they do, it causes alarm because it usually indicates some kind of infection. Case in point, in July when he had a fever and had to have his port removed and another put back in. My first thinking when he spiked such a high fever was... great, here we go again. Since he had not had his port accessed lately, I felt like it had to be something else. Another reason for fever would be a blood infection or some kind of massive infection. Well that just freaks me out. This is why we were cautious and went ahead and admitted him. Well, after swabbing, culturing, and testing everything possible it came back that he had a yeast infection and staph infection around his g-tube. Not a big deal, painful for Kaleb, but we treat with topical and oral antibiotics. That type of infection does not produce that type of fever and for that long.
After every possible test coming back negative, it seems it was some weird virus (also a code used when they don't know what the heck it was). His lungs looks good, his fever is gone, he is on 3 IV's, 1 oral, tamiflu (just in case), topical antibiotics.....so I think we have it all covered. Normally, I am ok being here for long periods of time, that is when his lungs are involved. Since we have everything under control and his lungs are good, I WANT OUT. I am being pretty pushy with his doc, I know he is more conservative, but I am really wanting out now. I feel like he is ok and my momma intuition hasn't failed me yet. He will eat better and rest better at home and I worry about him picking something else up the longer we stay here. I hope to know something for sure today (waiting to see doc this morning).
He has pseudomonas and aspergillus in his lungs. Both of those are permanent residents. Those make him more susceptible to infection and sickness, I am aware of that. That may be why he caught a virus and the rest of us didn't. Who knows. CF is a confusing and unpredictable thing.
Join us in prayer for complete healing, that we go home SOON, and that he has no complications.
Thanks for your prayers and support
~Kristi

Frequently asked (or implied) questions....

2011-10-11T09:10:00.000-07:00

We have been dealing with CF for 10 years. Over those 10 years, we have developed habits, we do things a certain way. We have been asked many questions over the years. I believe, that these questions are asked out of love and concern and so I don't take offense to any of them. I try to be open and communicate, that is one reason why I do this blog. I thought that maybe, I should try to answer some of these.
*Disclaimer: Like CF, things are always changing. This may be our answer today, but some of these things have changed in the last 10 years and I am open to some of these changing in the future. Some of these are age things and as Kaleb gets older, our routine and what we allow can also change.

Keep in mind that some of these are parenting style things. Some are preferences. Some are compromises and family (me, Dave, Hannah, Kaleb) decisions. Some of these are decisions made out of necessity or being let down. Some of these are trial and error. There is no handbook for being a CF parent, I wish there was. But even if there was, it wouldn't apply to everyone because each family situation, each child with CF, is so different. This is what works for us and only us.

Why don't you ever leave the hospital? Why are you the only one that spends the night?
When Kaleb was diagnosed, David and I took on roles. My role was the day to day caretaker as I was a stay at home mom. Medical things don't bother me, I feel like I am calm under pressure, and out of necessity, I can put my emotions aside and think clearly to take care of Kaleb. When Kaleb was first hospitalized in California, I was the one to stay with him because David was in school, working, and Hannah was very young (under a year) and needed to stay away from the hospital. Ever since then, David and I kind of stayed in our roles and it fit. I stay in the hospital, Dave takes care of Hannah and works. We have discussed switching roles, but we have both settled into them so well, it makes us both uncomfortable thinking about changing. Plus, we are both creatures of habit, routine, and controlling in nature. Our routine is comfortable. I have left on a few occasions for coaching and it is very stressful. Kaleb is used to me being here. David isn't used to being here. I feel guilty the whole time I am gone. I also know everyone and everything about the hospital and routine. Being here so much, it becomes very much a second home. It isn't that David or others can't do it, it is just easier if I do.
Why won't you let other people take Hannah or help with her more?
This is a parenting thing. David feels very strongly about Hannah having her routine. I trust his decision regarding this because he is the one that is with her all of the time. He knows what environment she thrives under, he gets when she needs things, because he is there. He has a very good understanding of boundaries and down time. I tend to go and go and go. David knows better when to rest. David and I feel very strongly about not pushing Hannah off on others for several reasons. It is important she doesn't take 2nd to Kaleb or his disease, there are enough psychological issues involved being a sibling of a terminally ill child as it is. Hannah gets insecure and worried when Kaleb is hospitalized and we have noticed that she needs to be with one of us. She really wants to be down at the hospital and I am sure in the future, she will. It is also important to us that Hannah feels loved and supported by us. When she gets older, if she decides she wants to stay busy, go to a friends, etc that is her choice, but right now, we think it is best she keeps her routine and is with one of us most of the time.
Why are you so strict on visitors?
There is a lot of pressure regarding decision making and CF. The doctor lets us make a lot of decisions based on preferences and what we think is best for Kaleb. Being in the hospital is really the worst place for a CF child although it is where they end up. Being in the hospital exposes you to other sickness, it wears you down because you don't get your normal sleep or food. In the past, we were less strict on visiting and Kaleb and I both got sick and worn down. It is exhausting. It can be tiring to host visitors. A simple cold or touching something while in the hospital can transport illness to Kaleb's already worn down immune system. It is a judgement call really. We feel a lot of pressure with that judgement because we don't want to mess up. Sometimes, we don't have a choice. Sometimes we are in isolation because he has something he could expose others too, sometimes he is isolation because he is susceptible to catching things.
Lately, we have been less open to visitors because he has too much going on. We are very happy when people drop things off and still think of us. We know you want to come in and say hi. We know you want to visit. Kaleb wants that too. But we have to do what we think is best. Things have changed in the last year. Since this time last year Kaleb has been in the hospital 4 times and had 3 surgeries. He has grown 2 things they say he will never get rid of. Those things make his body susceptible to simple things, like a virus, or a cold, or a fever. We just need people to trust us. We are doing what is best for our child. We love that you want to visit and you can ask, but when we say no, don't take it personally.
Why don't you ever take a break and let someone else come up there or sit with Kaleb?
You can see the previous answers for this one.
Also, I feel guilty. Kaleb doesn't get a break, why should I? I can't reconcile taking a break while he is sick. Plus, this is my job (I think of it that way). Being a parent is a full time job, add in CF, and it is overtime! God trusted Kaleb in our care, we take that very seriously. As he gets older, this will change I am sure but what if something happened while I or we were gone? I wouldn't want that kind of decision or pressure on someone else. You don't have to agree with me, but it is how I feel. It is also a control thing. I can't control CF but I can control being with Kaleb. I also want every moment I can get with him. We are never promised another day. And just in case another CF parent is reading this, I don't pass judgement on others for choosing to do it another way. This is just what works for us. More power to ya!!
Can't you just teach someone else to take care of Kaleb?
I am sure I (we) could. Me not wanting to doesn't mean that others are not capable. I also know there are plenty that are capable. But again, this is our child. We have been given charge over him and we take that responsibility very seriously. Also, again, control. It is hard to trust and give up control to others. It is also hard on Kaleb. He likes familiar and routine and for us to do things. He very often asks the nurses to allow me to do things at the hospital because he knows I care, I will be careful, and I understand him. I do his breathing treatments, I change his gtube, I flush his IV's, I change his dressings, I hold his hand and comfort his tears. I know him so well, I can tell by a look how he is feeling and if he is uncomfortable. When I was sick and little, I didn't want just anyone, I wanted my mom and dad. It is embarrassing for him to be sick, to be vulnerable. It is hard for him to not be able to do things on his own. So it isn't just for us, it is for Kaleb too.
It seems like you push people away, why is that?
CF is a lonely disease. As much as others want to understand, there are some things they never will. That is ok. We have developed a bit of a wall around us because CF is so hard and we know we can depend on each other and so we have to do that. Emotionally, CF is difficult. We have to protect our emotions and sometimes we have to turn them off to survive. It is also hard to be let down. To open ourselves up, take chances, and then have it not work out. I know that is part of life, but in our life, we have to be careful because we don't have a lot of extra emotion stuff left over. We have had a lot of disappointments and unmet expectations over the years and those left scars. People not doing what we are or respecting us or our decisions. People saying they will be there for us but then not. Those that only come around in drama, sickness, or emergencies. That is hard on us. We have to be careful about who we let in. We have a wonderful support system through our sunday school class and work, they are great and supportive people we can be honest with. Kaleb has lifelong friends from school and class that are there for him every time. We have a great extended CF family we can lean on through fb and email. We have prayer warriors that are on their knees. We have my family who will do anything we need, whenever we need. I can call them and cry, tell them what is up, what I need, what I like and don't like. We have learned through the years to appreciate those we have and not worry about those we don't. It is their loss really.
Why won't you let people do more for you, like meals for Dave and Hannah or you when you get back home?
When we get home, all we want to do is be left alone. We have to reconnect as a family. Being at the hospital really takes its toll on us. Our marriage, our family. It stinks. We never know what we want to eat or when. It is easiest when people just give us gift cards and we can work it around our routine. Plus, our kids are picky eaters. Ha. When Dave and Hannah are at home, we have tried the meal thing for them but it becomes a hassle. I have to try to organize it and then work it around their routine which we never know what that will be. It ended up causing us more stress than not so we decided against it. No offense to anyone, it just doesn't work for us.

I hope this gives you some insight. Again, this could and probably will change. This is just right now. A little psychological insight :) Should I lay on a couch now and be charged $100 an hour? This is what we have decided, this is what works for us. We prayerfully decide what is best for us and our family and let God guide us through. With His guidance, we feel like we can't go wrong really.

Monday Night Update

2011-10-10T20:54:00.000-07:00

Kaleb's fever broke and all the tests have come back negative. It is looking like a virus. We cannot go home until he is fever free. Join me in prayer. NO MORE FEVER. When we do go home, we won't have to do IV's for very long (a total of 2 weeks from admit) because we want to pump him up with antibiotics to protect his body from bacteria but not overdo it. When you have a virus or fever it opens someone like Kaleb up to bacteria to take over. There is a chance something could still show up on his blood but not a high chance. Praying for everything to be clean.
Join me in prayer for healing. Join me in prayer for Kaleb to start feeling better and get to go home.
~Kristi

Kaleb Monday update

2011-10-10T05:51:00.001-07:00

Kaleb's levels came back low last night so we have to change the dosage of the Vancomycin and re-test sometime in the next day or so. He had been fever free all day and then last night he was acting lethargic and we noticed his cheeks were flushed. His fever went back to 101. It broke last night but this morning around 5 he was up with a cough and his fever is back up to 102.
We are hoping to get some results today. I should be able to talk to the doc this morning about the new chest x-ray results, Kaleb having a fever since Friday night, and his increased cough. He was up all night and we are doing treatments every 4 hours and he is still hacking his lungs up.
We are running his night feed longer and at a higher dose through his g-tube because he really isn't eating. When his fever is spiking he won't eat at all. Since we have been here Sunday, he has taken a few bites here and there and ate one hamburger last night.
I am just praying for answers so we know the best way to treat him, how long we will be here and so we know if we need to stay in isolation or not. If you want to drop something off you can, just leave it at 7 West nurses station at St. Johns and they will bring it to me.
I will update whenever I find anything out today. Meanwhile, join us in prayer for Kaleb.

Kaleb update Sunday

2011-10-09T07:09:00.000-07:00

There is nothing more frustrating then knowing there is something wrong with your child but not knowing what.
I should have seen this coming. Kaleb mentioned last week to me and his teacher that he felt a hospitalization coming on and he is always right. The two nights before we came in I couldn't sleep and my stomach was in knots. I was very uneasy.
There are so many possibilities of what it could be. Because of CF, we have to take everything so seriously, even a virus. That is why we get so upset when people send their sick kids to school or people don't stay home when they are sick. It may not be a big deal to you, but it will put my kid in the hospital.
Kaleb's doc was explaining to me that even if this turns out to just be a virus of some kind, we have to treat with IV antibiotics because he has pseudomonas and aspergillas and if we don't treat with IV's, then those bacteria will ravage his body.
His primary blood tests came back with low white cells which indicates a viral infection but his bands and one other thing in his blood came back very high which indicates a bacterial infection, so....we wait for the 24-72 hours for all the test results to come back.
He has some streaking and pockets in his lower lobes indicating bronchitis and possible early pneumonia. He has a lot of congestion in his head and nose and his cough has increased although it isn't very productive.
He has had a fever for about 36 hours and this morning on advil and tylenol has gone back to normal. We will see if that stays and if his fever has broken or not.
He really hasn't eaten in the last day. He says he is hungry but when the food is here, he doesn't eat it. Fevers can do that and all of the mucus can upset his stomach.
He is on 3 IV's, one of them has side effects to hearing and kidney's so we have to test his blood (but cannot use his port because that is the site the meds go in) to see if the dosing is correct. He will have those labs drawn tonight around 6:30pm.
If his test results come back negative for certain things, we can drop this IV (Vancomycin) in 72 hours, but he is on 3 that cover pretty much all possibilities just in case.
We don't know how long we are in here because we don't know what we are dealing with. He has has an infection and issues with his g-tube in his stomach so we cultured that and added some topical medicine as well as stabilizing it with tape and 2x2's so it cannot move and irritate his stomach and tract. There is a possibility that there is an infection there that moved into his blood. We have pretty much cultured and tested everything so we should catch whatever is going on.
The quick flu and strep came back negative but they also send out a test that takes longer. Until they know what we are dealing with, we are in strict isolation. We are on floor 7 but cannot have visitors and I cannot come and go. If you want to drop something off, you can at the nurses station floor 7 at St John and they will bring it to us.

Please pray for his fever to stay gone
For quick test results
For his pain level to be low on blood draws
For his appetite to return and stomach to stop hurting
For his spirits as well as mine and being in isolation stinks
For his lungs to be protected from scarring
For Hannah who is very upset about this and off her routine
For David to get his doctorate classes done (he has a huge paper to write) with all this chaos
For things to workout for volleyball this Thursday-Saturday whether or not I can be there

Wish List:
Gift cards for food and starbucks
Snacks for me or money for snacks
Lego Hero Factory- Furno 3.0 or Rocka 3.0, or Stormer 3.0 or Rocka XL or Witch Doctor, Fire lord, Waspix, Fangz (these are toys at walmart, toys r us, target)
Lego Starwars Luke's landspeeder
Lego Star Wars the Padawan Menace DVD
Rio the DVD
Robots the DVD
Alvin and the Chipmunks the Squeekquel (the second alvin and chipmunks movie)
Any Garfield movies or tv show cartoon DVD's

Thank you
Will update when we know more
~Kristi

Kaleb update

2011-10-08T09:42:00.000-07:00

Kaleb had a small, low grade fever last night. This morning after he woke up it was 104.5. After speaking with his doc over the phone, they decided to admit him to St. Johns. This is because he rarely gets fevers and it is the beginning of flu season (and he has not had his shot yet), and because in July he had so many infections and bacteria in his lungs and blood. We are running blood cultures, xray, lung and sputum cultures, throat swab for strep, and nose swab for flu. Hopefully we will find out what is wrong soon. We are starting IV's and waiting on results. Because they don't know what is wrong he cannot have visitors. They are treating him as if he has flu until they know so gown, glove, mask, no visitors.
Please pray for answers, for Kaleb (he feels really bad), for our family (this was very unexpected).
I was supposed to be coaching my Varsity at state today and wasn't able to go. They have one more week and a 3 day tournament in Bartlesville this week (Thursday, Friday, Saturday) so with Kaleb in here we aren't sure what is going to happen.
Lab is here, so I will update when I know.

Enjoying it all....

2011-10-06T16:43:00.001-07:00

This week was so fun as we enjoyed our big win for State. My middle school teams are done and every time they see me in the hallway they run to me and hug me. They talk about how much they already miss volleyball. I love that, that means I did something right. I love to win, but I also want them to enjoy themselves, learn, become a better person, and want to keep playing.
We play in our HS State Friday and Saturday. We have a tough road this year, but I know they can do it. I am praying they will come out ready to play, ready to give 100%.
I am getting sad because volleyball is almost over. 1 more week and it is done. I am glad I still love it after 8 years at WCA and over 11 years coaching. I am glad I am sad when it is over and can't wait for it to start again. These girls, each one of them, mean so much to me. I love our relationships, our hang outs, our funny times. I love that they come talk to me, confide in me. I love that we can pray together and I can pray for them. I love that they can come to me and tell me what is on their hearts.
I am trying to just enjoy these last few days. I am graduating 3 seniors that I have coached since middle school and I am trying not to think about it so I don't get sad. It is hard to teach them the game, coach them for 6 or 7 years and then one day, they are just gone. It is just done. So hard.
I am so blessed to have this job, to do something I love, to pass on knowledge of a game that is such a huge part of my life for so many years. I am so fortunate to be here at WCA and be involved in these girls lives.
I am just taking it all in....enjoying it all.

Keeping Hope Alive....

2011-10-03T16:19:00.000-07:00

"Nor yet can dialogue exist without hope. Hope is rooted in men's incompletion, from which they move out in constant search-a search which can be carried out only in communion with other men. Hopelessness is a form of silence, of denying the world and fleeing from it. The dehumanization resulting from an unjust order is not a cause for despair but for hope, leading to the incessant pursuit of the humanity denied by injustice. Hope, however, does not consist in crossing one's arms and waiting. As long as I fight, I am moved by hope; and if I fight with hope, then I can wait. As the encounter of men seeking to be more fully human, dialogue cannot be carried out in a climate of hopelessness." -David Flinders and Stephen Thornton

Man's hope will stay alive as long as they resist what oppresses them.
Resist isolation.
Resist negativity.
Resist silence.
Resist despair.
Resist doing nothing.
Resist passivity.
Resist the urge to stop fighting.

This excerpt gives me hope. It speaks of hope. It speaks of not allowing things or people to oppress me. It inspires me to fight that urge to give up when it seems like everything is against us.

It also reminds me that I am doing it right. It is why I crave interaction. Why I cannot stand those that try to oppress us and take our hope. Why I fight so hard to keep this family together and for what I know our family needs. Why I cannot give up. Why when I see injustice, I cannot just let it go. That steals all hope. Without hope, what is there? It reminds me to keep resisting all of those things above that steal hope. To press on. To keep going and keep that hope alive.

2011 OCSAA State MS Champs!

2011-10-02T18:42:00.000-07:00

What I learned from coaching....

2011-10-02T15:58:00.000-07:00

I have learned a lot from coaching. You see a lot of raw human nature in the course of a competitive game. You see those that are honest, those that cheat. Those that work hard no matter what, those that never give up. You see those that handle disappoint with grace and those that are a disgrace. You see what is important to people and what doesn't matter. It all comes into play.
I have seen a lot over the last 11 years of coaching. It has helped me to realize what is important and what is not. It has built character in me, taught me how to deal with disappointment and unmet expectations. It has taught me that success doesn't always come in the form of a trophy or a win. It has showed me what type of coach I never want to be, what type of parent I never want to be, and how I want my kids to feel when they play sports. It has taught me what I will allow in a coach for my child and what I will not. It has put me in situations I have no control over and it has given me control. It has allowed me to inspire and care, it has taught me to look past the surface and the responses to see what is deep inside. It has taught me to have grace and let things go. It has allowed me to see when to push and when to let it go. When to encourage and when to discipline. When to get firm and when to be silly. It has huge life applications really.

Yesterday I experience something new. I have coached at WCA for 8 years and this is the first time I coached a team to win State. I have coached 1st place in tournaments many times. I have had endless 2nd's and 3rd's, but never STATE. Everything went right yesterday. They all played well, the calls went our way, everyone showed up, no one was hurt, parents were happy, no one caused drama. In the end we were successful. In the end, that coveted trophy was ours.
But to be honest, I thought it would be a little different. I thought it would be a BIGGER deal. But in the end, as we sat at dinner as a team, although they were happy they won, what they were talking about, what they were laughing about had nothing to do with that trophy. By Monday, we will have moved onto the next, the girls will start getting ready for another sport, I will have to prepare another team for another State tournament. But what we will remember is the relationships we have. How we talked to each other, the grace we gave each other, the hugs we had when we made a mistake, the unconditional love, the laughing, the cheering, the friendships. That is what we remember.

I have learned a lot from coaching and it isn't what I thought I would learn. I feel blessed to be in a position to have the influence I do and experience those relationships and those moments that matter so much more than any trophy.

How Did I End Up Here?

2011-09-28T08:14:00.001-07:00

Do you ever stop and wonder how you got where you are? Do you ever look back at what you thought you would be doing or where you thought you would be and just be amazed at where God has you?
I struggle with knowing we are where God wants us but being content where we are. I am in such a different place than I ever thought in such different circumstances that I ever believed or thought would happen. It is hard to live so far away from my family and our support system. It is hard that some of my best friends live far away and we are connected through fb and the internet. We are so lucky to work at the job we do and have them step in to be our family and for us to have found a church Sunday school class that fills those gaps and is there in the nitty gritty for us to pray and cry and hug us.
We know that God has us here in our jobs, with Kaleb's doctor, in this state....God has a greater plan for us than we could ever imagine, I just wish he would fill me in on it sometimes ;)
David is thriving right now in his doctorate program and I am so proud of him for supporting our family and pushing himself despite our circumstances to do this program. It is easy to settle and use sickness, money, family situations to be an excuse. I am so proud of him for rising above all of that. He is flying through it too as a straight A student!
Kaleb has such a great connection with his Doctor and classmates, and he has really found his place with basketball and his coaches. He gets to do Upwards again and will have the same coaches. Hannah will play this year too and she is very excited to try something new.
I look forward to seeing my volleyball girls each day and hearing about their lives, the students that I interact with, the staff. It proves to be a blessing to me and our family.
As I was working out this morning and then again on the way to work I was just thinking through where we are, our lives, our situations, the positives, the negatives, those things we can control, and those we can't. I said a silent prayer to my God who carries me and my family through and thanked Him for the many blessings He has showered upon us.

The lessons I learn....from God.

2011-09-27T08:37:00.000-07:00

God has been teaching me a lot of things. One thing he has taught me is how to literally take each day one step at a time. This lesson came to me through Kaleb. It was mostly out of necessity because he was getting so overwhelmed with things that I had to break it down for him. It has become such a moment by moment, day by day process, that I have started to see things that way.
Each morning, we start the day very early and we come across various obstacles. In those obstacles we are given a choice. How will we handle this? Sometimes it goes off without a hitch. Sometimes we make mistakes and have to go back to correct it. Sometimes we cry. Sometimes we get angry. Every day we pray.
We have started to have talks on the way to school. They are pep talks really. We talk about the obstacles we might come against during the day, the things that scare us or are something we think are worrisome, the options we have on how to deal with these things and the attitude we are going to have. We all take turns with this since we are all dealing with issues. Although it all comes back to CF and that being the overriding stressor that causes everything else to be so fragile, we talk about more than just that.
Kaleb and Hannah both find comfort and peace in just talking it out. I am that way too. But they really seem to respond to different verses that give us guidance along with just knowing that I am praying for them vigilantly each day. When I see them at recess or lunch, or in the halls, I ask how they are and if it is a day of struggle, we go back over those things we have talked about that day. Kaleb has to come to me several times a day for meds, treatments, snacks. He checks in on me to see how I am and I ask how he is. Sometimes, he just pops his head in to say hi. I feel lucky to work here and have that flexibility for him.
Another thing God has taught me is how to process things and how there are many situations and people I have no control over. When I hear a comment, read a status or comment on facebook, read a blog, or see interaction of people...I have to check myself and process it. I have to remind myself of my boundaries, who they are and who I am. I have remind myself of who and what is important. I have to rejoice in the people I do have in my life, those friends and family that are supportive, instead of those that are not. I have to ignore the drama and the pity filled and drama causing fb comments and blogs, I have to choose to focus on those things that matter.
I am reminded every morning what those things are. As I hug tightly my child who works every moment to breath and understand why his body is working against him. As I comfort and wipe the tears of the other who doesn't understand why this is all happening to our family. As we pray together and dwell on those things the Lord has given us for guidance and comfort....we cling to each other and to the Lord and get ready to face one more day.

It is all coming together....

2011-09-21T10:50:00.000-07:00

This weekend we went to Del City Oklahoma to play in a tournament at Destiny. We played 5A and 6A schools all day and played well. I tried a new line up and we worked through some things and ended up with Silver Championship. We defeated Moore and NW Classan in Semi's and Finals!
Last night we played one of our local rivals Rejoice who is now in the state association. They are ranked #13 in 4A and we won in 5 games! We won 18-16 and it was an intense and awesome match! My girls are finally hitting their stride and just in time for state! We have 3 more home matches and then State and Tri-State!

A whisper to God....

2011-09-16T08:32:00.000-07:00

I have been very frustrated with my lack of blogging lately. There are several reasons for that. First, my new job is keeping me on my toes. I am literally working from the moment I get there until I get home from volleyball. I don't have anytime to sit and express myself through the written word.
Second, when I do get home, I want to spend time with my family. During volleyball season, it is so hectic that I grab every second I can get with them.
Thirdly, I go back and forth with how much to share. This is public and I have an idea of who reads it and I think there are some others that read it that aren't "followers" so I have to really think about what I want "out there" in the world of blogging. As Kaleb gets older and starts to form opinions about things, I try to be sensitive to him and his privacy. The last thing I want is for one of his friends or their family to read something on here and mention it to him and have him feel like his privacy was violated. So, I am kinda struggling with what to say and how to say it.
But, this is such a form of therapy for me. It helps me to not shove it all deep inside and allow it to slowly eat at me. Maybe there will be a time soon where I need to find another type of therapy. Writing helps me, it doesn't have to be public.

Since Kaleb went into the hospital in July our whole family has been struggling. The ebbs and flows of the disease, the stages of grieving, coming to grips with the disease and its progression. Normally, we struggle with these things but seem to take turns with it. For whatever reason, after the July hospitalization and the aftermath of those surgeries and progression of the disease, we all hit the bottom together....and hard.

Now that the kids are older, it changes the dynamic of the disease and processing it. We have to take into account their feelings and struggles as young and maturing kiddos. They ask questions, they have feelings and emotions, they have anger, they have depression, they have frustration.

So now, not only do we have to deal with our way of handling CF and what we struggle with as parents and adults, we have to deal with Kaleb as an almost 11 year old and Hannah as an almost 9 year old trying to make sense of this all.

We have to deal with Kaleb as a young man dealing with CF and all its ramifications, implications, and progressions. We have to answer questions like "what is the point of school? I am not going to make it to graduate anyways." We have to help him process why we have to get up earlier because treatments take longer and we need extra time because he doesn't feel as good in the morning. We have to listen to him share with us how different he feels and how frustrated he is when he has to come to me mid day to eat a snack because he is so hungry as his little body fights to just breathe. How frustrated he is when he comes to me at school and is wheezing but he has already done all his treatments and I have no more meds for him. When he feels his chest tighten and the junk fill up in his throat. When his voices hides behind the mucus and it sounds funny and he is afraid someone is going to ask why. When he gets so mad and has no idea why. When he gets so tired and his brain is fuzzy and he knows it is because of his stupid CF. When he asks us why and we can't give him an answer.

We have to deal with Hannah as a young woman who is watching her brother suffer and is helpless to stop it. We have to deal with her as a sibling who has to be put on the back burner when a crisis comes up with Kaleb. We have to deal with her feelings about the disease and the fact that somehow she escaped those genes and Kaleb did not. We have to hold her when she cries and doesn't know how to tell us why....but we know.

David and I get overwhelmed. We get frustrated. We hurt for and with our kids. We look at each other and both have no answers. We grasp at straws, we look for help, we pray....

And so we have to take it one day at a time. We have to stop everything that is going on, we have to be late to work because one of our kids has a breakdown just as we get in the car. We have to grab hands in the car in the parking lot and pray together that today, just today, we can make it through. One. Day. At. A. Time.
And then at the end of the day, I hold my breathe as I ask them how their day was. As I wait to see if I will be greeted with tears or smiles. If I will hear "good day" or "bad day" from their little mouths.

And each day we get to start over. We get to do it all over again and answer the why's of treatments and routine. We talk through the frustration and what we will face that day. We send them off into their world with love, and prayers, and positive affirmation and thoughts. We hug them so tight and hold back the tears....and we whisper to God to lead them through, to help them, to hold them....
Then we whisper to God to make it all go away. To help us face our day. To get us through what we have to face and be ready for what our precious kiddos have to face and bring to us. We whisper for strength, for energy, for a brave face, for anything to get us through.....

His mercies are new every morning....

Updates

2011-09-05T15:31:00.000-07:00

I haven't blogged in a while and now I feel so behind, I am not sure what to blog.
I have been so busy at work, that there really isn't much time to blog and it seems to be the best way to communicate about Kaleb. When he isn't in the hospital, I don't know what to post about him.

Some updates on prayer posted.
Kara (the baby) is now home and improving. The mass was removed from her brain but she has limited movement on her right side. Her mom posts little improvements on FB and we are thankful she is home now.

Addi had back surgery at is at home recovering. She is dealing with elevated heart rate and low blood counts with iron (I think) so she is following up about that.

Vanessa and Mike are enjoying their precious baby who is home with them and the paperwork is signed!!

Kaleb has an appointment this month and we will see how he is doing with lunch function. He started inhaled Cayston this week, so that should help his symptoms.

I will try to post more consistently, I know people care and are praying....
Thank you

~Kristi

Share the prayer love....

2011-08-09T05:40:00.000-07:00

This is Addi. She is going into 7th grade. I have known her mom since Kaleb was born. On Tuesday, Addi will be having major surgery to fuse her spine. This is her spine below.

Addi's spinal curve has progressed from 32 degrees to 61 degrees in the last 6 months. Please pray for the Martin family and for Addi. Her mom reads my blog, so feel free to post on here words of encouragement.
The good news is that she will be at St. John, which is Kaleb's hospital and they are great.

This is Kara. She is 14 months old. I posted about her earlier this week. This is a post from her mom on her FB. Please continue to pray for the Sexton family. Her mom is one of my bestest friends, although we live countries apart....she was in my wedding and a great prayer warrior. She also reads my blog, so comment away.
"Last Saturday evening Kara threw up alot. Jason was with her, as I was out with our friend who was visiting from the states. I thought this throwing up was due to a cold/flu that each of the children had had. She slept all night and continued to sleep into the morning. I first thought it was b/c of her exhausting night and the fact that her nap schedule had been very messed up. The Lord gave me the wisdom to know that this was a bit more serious. Kara was not waking and if she did she was still very sleepy and her eyes would roll in her head. The Lord has provided contact with an American missionary family here and they've been absolutely amazing! They were able to tell me where to take Kara...Nekker Hospital. It is the oldest children's hospital in the world. By 2:30pm I had Kara at the hospital. After and EKG, chest x-ray, medication to stabilise her heart and a CT scan we knew there was something on her brain. They tubed her and sedated her to do and MRI to determine exactly what the mass was. It was found that it was blood, but they were not sure what was underneath. She then underwent a 5 hour surgery. Which was successful to remove the vascular malformation. However, she is still in a very critical condition. She is in a drug induced coma for a couple of days. The reason for this is to allow her body to rest and begin recovery. We are praying now for minimal brain swelling. She had a spike yesterday afternoon, but they were able to stabilize her and did another CT scan just to check that there was no new bleeding. We were told that the scan looked good. When Jason came to bed last night he told me that her cranial pressure number had gone down to 11. It was about a 15 when we were there earlier, but had spiked to a 25.

That is where we are at. We so appreciate and covet the prayers that are being prayed for us and our wee little Kara. We understand that she is a stewardship, but we pray for the chance to hold her and kiss her and enjoy her sweet smile once again. Our God is gracious. Our God is a Healer. Our God is our strength.

-Heidi"

This is Mike and Vanessa and their son.....Ari!!!
I asked you to pray for Mike and Vanessa and their journey to adoption. I also asked you to go to their blog here and follow along with helping raise money.
Long story short, they had not heard from birth mom in over a week and the due date was Sunday. They posted yesterday, they were not giving up, but letting go and their profile was being shown to other families.
I woke up this morning and what did I see? This picture. Ari is here!! And beyond anything we understand, they were contacted and were able to be AT THE HOSPITAL when he was born. Don't they look good as a family of 3? Leave comments for them here or go to their blog here and tell them congrats and they still need to raise more money!! Currently their puzzle piece fundraiser and scentsy fundraiser are going on. You can find the blog here and scentsy link here.

When we struggle with Kaleb, the thing that REALLY gives us peace is knowing we have people praying ALL OVER THE WORLD. Let's share the prayer love....Pray for these 3 families. 2 MAJOR prayer requests and one praise. Follow each of their journey's and I will keep updating. But most importantly, pray. Pray and post notes of encouragement on here, my email, and my FB and I will pass them along. God is good and when we feel helpless, prayer is the answer. Knowing people are praying is Hope.

Fundraiser for adoption

2011-08-07T14:34:00.000-07:00

Some friends that are trying to adopt are still trying to raise money, even though the current adoption they have been matched with is at a standstill as the birth mother is MIA. It costs about $30,000 to adopt and so far with several fundraisers including their puzzle fundraiser, they have raised $10,000. Right now another friend is hosting a scentsy party for them. You can order by going here and placing an order. It is for a good cause and the warmers and scents are amazing. There is a teacher warmer that I am a buying as teacher's gifts and I am getting one for my office!!
Follow the directions below and click on the link above.

Vanessa 'Priest' Thomas & Mike Thomas are having a Scentsy fundraiser during the entire month of August! They will get 20% of all sales and if the total goes over $2000, they will get 25%. All you have to do to contribute is go to the website and place a Scentsy order for yourself! On the left of the screen is a box that says Vanessa and Mike's Adoption. Click on "Buy from Party" next to that and start shopping

Thanks guys....

~Kristi

Urgent Prayer Request

2011-08-07T12:29:00.000-07:00

PRAYER WARRIORS: Please pray for one of my friends from college Heidi Dixon Sexton, her husband Jason and their family. Their youngest is in the hospital needing surgery to remove a mass from her brain. Her name is Kara and she is 14 months old. They live in Paris right now because her hubby is in a PhD program and are away from all family. They just found out a few hours ago...

Please pray!

~Kristi

And we keep going....

2011-08-03T12:54:00.000-07:00

And then we go home.
We have a moment to think.
We get up every 2 1/2 hours to change IV's.
We keep Kaleb inside because it is so hot, he will sweat, and his dressing will come off and risk infection.
We keep him inside because his precious little body is working overtime to fight yeast, aspergillas mold, pseudomonas, mycoplasma bacteria, legionella bacteria, his CF.
We try to balance parenting, work, and having a relationship.
We try not to fall apart.

But then it hits us. We catch the other one wiping a tear. We have no words, words don't have to be spoken...we know the truth.
And. It. Hurts.

The progression. It just gets worse. We fight and fight. We manage and we maintain. It progresses.....

We try desperately to not loose hope, we can't lose that....we grasp with everything we have to try to hold on....

And we keep going. It's all we can do. We take a deep breath and we push forward....and we cling desperately to each other. And we cling desperately to that hope. And we cling desperately to our Lord......

Going home...

2011-08-01T12:02:00.000-07:00

Kaleb is being released right now!! YEAH!

Blog Spotlight....help a friend in need

2011-07-30T19:14:00.000-07:00

One of Kaleb's teachers has a daughter who is married and because of medical problems cannot have a child biologically. We know them from the church we used to go to and from Kaleb's teacher. Mike and Vanessa are their names. I am not doing justice to their story by the way. Her blog explains it much better. Anyways, after a while of trying and trying to decide how to become parents they went through the road of adoption and have been trying to raise the $30,000 to do so. Well, they are about 1/3 of the way there and have been matched for adoption. The baby is due Aug. 7!
They have created a wonderful fundraiser where they are selling puzzle pieces to this wonderful puzzle as a fundraiser. They are writing the names of those who purchase them on the back.

See their latest update and blog here

I don't know what it is like to not be able to have children and I cannot imagine my life without mine. We have always been sooo supported by my FB friends, family, church friends, and blog readers when we raise money for a cure for CF for Kaleb.
Can I ask you to support someone who is ready to be a parent? If you feel lead to please go to their blog and they have a paypal you can click on to help raise money. They need to raise $20,000 in one month. Each piece is $10! If you cannot use paypal or don't feel comfortable, send me checks written to Mike and Vanessa Thomas and mail it to me and I will hand deliver.
My address is:
1413 W El Paso St
Broken Arrow, Ok 74012

Let's shower them with some love!!

Thanks
~Kristi

Why I share...

2011-07-30T11:47:00.000-07:00

I started this blog as a means of communication and updating to those family members who live in California. An online journal/memory book that allowed those we live so far away from feel like they aren't missing anything.
Sometimes I use this blog as therapy.
Sometimes I use this blog to vent.
Sometimes I use this blog to inform.
Sometimes I use this blog so I will remember.

All of these reasons are why I blog. I wonder sometimes if I over share. I think it is a personal preference and part of my personality that feels comfortable with posting what I post.

When I really started connecting with CF families and CF'ers over the internet, one of the main ways I was informed and educated was through blogs. It is a way to learn and hear what others go through along with someone you know is on a similar path.

Every once in a while, someone will mention they read my blog. Someone will email me, tell me in person, tell a family member, or make a comment on here. I am blown away by how many people read this. I have an idea by those that "follow", but some never comment or "follow", they just read.

Maybe it is selfish of me to want people to read and pray for us. But when I am sitting here in the hospital with Kaleb, sometimes, the only thing that gets me through the day is knowing there are people ALL over the country lifting my boy up to the Lord.

More than other reason for blogging, I choose to blog because I hope that our journey can encourage people out there. Maybe you will never know the pain of taking care of a chronically ill child, maybe you will never stay in the hospital, maybe you won't ever be apart from your family for long periods of time...but you will have something.

I have been encouraged by reading what others have had to say on their blogs. I have felt renewed, I have been reminded, I have been given perspective and focus, I have learned, I have been brought closer to the Lord. If my blog can do any of those things...to God be the Glory.

This is our journey. Sometimes, I get frustrated with it. Sometimes I feel alone. Sometimes I just need a break. But I continue to share and I appreciate all of those that read, pray, comment, and share our story.

~Kristi

Good news...

2011-07-29T07:04:00.001-07:00

Saw Dr. Carey very late last night and he told us what we have been waiting to hear. We are being releasead (pending no major complications) on Monday afternoon/evening after 13 days and 2 surgeries.
David will come here on Monday morning with Kaleb and I will go to volleyball practice with Hannah (we start pre-season for my 4 teams that morning). After practice, I will come back here and get us discharged, get home IV's, and get us settled in at home while Dave goes to work in the afternoon.
Today we are having a CT of lungs to see how we are doing and any scar tissue.
No PFT's this trip because they don't think they will be accurate because of his soreness and pain. He won't be able to give full effort. His PFT's were 69% before we came in and so next week at a follow up appointment, we will do it at the office.
Kaleb will be on IV's for at least 8 days at home. He has to have all the junk in his chest gone before we stop. So the Monday or Tuesday before school we will re-evaluate.
Kaleb will continue oral erithromycin for the mycoplasma and legionella.
Kaleb will continue oral diflucan for the yeast.
Waiting on Vitamin D level to see if we need to increase that (there is a correlation between Vit D levels and ability for the body to heal).
We will do a follow up skin allergy test for the Aspergillus in his lungs at his follow up IV appointment. Still waiting on his IGG blood Aspergillus test.
As far as the yeast, mycoplasma, legionella, pseudomonas, and aspergillas goes....basically at this point we monitor symptoms. If he continues to improve, we know the meds are working. We won't retest blood unless symptoms get worse or come back.
We are praying Kaleb stays healthy through Volleyball season and until Fall Break or Thanksgiving. That way, if he does need IV's again, maybe he won't have to miss school.
Kaleb 3 incisions and arm wound from the PICC continue to heal. We are praying against and infection and we are praying for quick healing.
He has only taken 1 pain med and has complained little to none. I have to ask him if he hurts, he won't tell me. He is very tough. There is some stiffness and swelling this morning but I am assured this is normal. He is up and walking laps (for his lungs) and eating well. His throat feels much better today (it hurts after major surgery from the tube they put down it) and he is in good spirits!
Thank you for prayers and please keep them coming!!

-Stephen might be released today if he can tolerate food, keep praying for him and my friend.
-Pray for David and I as we scramble to get things ready for work and school to start. I am way behind on getting things ready for volleyball, work, and the kids for school.
-Pray that Kaleb can be off IV's for school to start. There are several new kids and Kaleb is nervous because they don't know he has CF or have never been exposed to him on IV's.
-Pray the IV needle in his new port holds up. It is larger than normal in length and sticks out quite a bit. We don't want to have to change the needle because that risks infection but there is a bit of space between the skin and you can see the needle. Normally the needle sits flush against the skin.
-Pray for David, Kaleb, Hannah, and I to have some good family time despite the crazy schedules and we can connect as a family again. These hospital stays stink for family time.

THANK YOU to everyone for praying, gifts, cards, helping, encouragement.....words cannot even express our gratitude.

One tough cookie....

2011-07-28T11:46:00.002-07:00

They came and got us around 10 with surgery scheduled at 10:30. After talking things over with the surgeon and anesthesiologist, Kaleb and I went back.
I have to say, leaving your child in a sterile room, hooked up to monitors and machines, with hospital personnel hustling and bustling about and then watching your child go "under" is quite hard on a mommy if you stop and think about it. Sitting in a quiet room by yourself waiting for them to come get you while you pray surgery goes well is nerve wracking.
After almost an hour the surgeon came out to tell me that it went well. He did inform me of a couple of things.
-Kaleb started waking up early to everyone's surprise (why that is a surprise after I told them he does that and what happened Monday is beyond me). Because of that, they had to rush to finish the sealing the incisions and so he might have a bigger scar(good thing scars are awesome for boys).
-Kaleb had a mini smart port put in. It is much smaller than his last and the catheter was placed up and over his clavicle verses under. They thread them through veins, I just can't remember all the medical mumbo jumbo jargon right now.
-They ran the catheter pretty deep into his Super Vena Cava so that as he grows, it stays placed properly to hopefully avoid another replacement anytime soon. Please pray against any complications with this placement.
-He is going to be (and is already) pretty sore. Because of his anatomy (just the way God made him) there was muscle in the way in his neck so they had to go through it with the port and catheter to get it in place. He has already said his neck, throat, and chest hurt.
-We have to be here at least 3 more days before they consider releasing us to go home.
-The new port is working and accessed. IV's are going through it right now! So, they were able to remove his PICC.

Please pray for us. We are both very tired, and my poor boy has 3 incisions in his chest/neck and one in his upper arm above his elbow (inside the arm) where the PICC was.
Pray for healing and that Kaleb can go to school when it starts August 11.
Pray that his incisions are healed by then and if he is still on IV's, he doesn't have any complications so we can keep school routine on IV's.

Thank you for your support and prayers. Kaleb has gotten so many cards and gifts! We really appreciate your generosity!!

~Kristi

2011-07-28T11:46:00.001-07:00

Time set for surgery #2

2011-07-28T07:02:00.000-07:00

Surgery is now scheduled for 10:30 am. Kaleb got the same surgeon as on Monday and he just came up to pray with us. That is awesome. I will update later today when Kaleb and I are back in the room. Thanks for the prayers.

PS My coach friends hubby Stephen is doing better today. Fever broke last night and he was able to get up and walk. Keep them lifted up in prayer for a swift recover and for pain to be diminished. Thank you!!

~Kristi

Time to get praying....

2011-07-27T17:02:00.000-07:00

Surgery is definitely tomorrow but we don't know a time. It is through radiology but under general anesthesia but they are "working him in". He cannot eat or drink after midnight and in the morning we will just wait until they come and get us.
Please pray for him to get in early.
Please pray for the nurses, techs, anesthesiologists, and PA Robert Oly who is performing the surgery.
Please pray for Kaleb and his level of pain. He will have two bandages and incisions in his chest, one on the right, one on the left, (one from port removal and one from port insertion) and one in his arm from the PICC removal.
I will update as I can tomorrow.

PS PRAYER WARRIORS:
One of my friends Brooke (she is a fellow volleyball coach) needs prayer. Her husband Stephen had an emergency appendectomy and it had ruptured. It took twice as long for the surgery because it was stuck under his colon. He is in the hospital recovering. Please pray for healing and for their family (they have 3 kids)

A long time ago I asked for prayer for another former coach whose wife had to deliver twins early because of twin to twin transfusion syndrome. One of the twins died, but the other survived but has been in the NICU at the same hospital we are in. A PRAISE is that she was released SUNDAY to go home! We thank God for his healing and protection.

~Kristi

Surgery #2

2011-07-27T06:58:00.001-07:00

I was finally able to "sit down" and talk with Kaleb's Doc. After reading the surgeon's notes and talking over this procedure, it was advised by the surgeon that we do the surgery through radiology but under general anesthesia. This surgery is more invasive and more painful and we didn't want to risk him waking up or feeling anything. I trust all the doc's involved so I am "ok" with the decision, although it always makes me nervous for him to have general since they put a tube down his throat to breathe for him during surgery. We should know this afternoon/evening time for surgery and most likely, it will be early since he is younger.
I will update when I know about times.
Thanks for praying...

~Kristi

What if trials of this life are mercies in disguise...

2011-07-26T12:32:00.000-07:00

My mom texted me the other day recommending I listen to this song. I had heard it before, but today I took the time to listen to it and read the words on this you tube video. I feel like it couldn't have been more perfect. I hope this blesses you as much as it did me. The lyrics are just perfect for our lives right now.

My God is....

2011-07-25T09:55:00.000-07:00

We have been so covered in prayer through this whole situation and I know God is working in this. I just wanted to share with you some REALLY awesome things that occurred today so you may see evidence of HOW GREAT our God is.

First of all, to much of everyone's surprise, they came and got Kaleb at 8:15am. The nurses on the floor said they had NEVER seen someone get "worked in" that early.
My God is stronger than any schedule....

This morning Kaleb was at peace. When we went down, he had come to grips with everything and was doing well.
My God is the giver of Peace....

The staff greeted us with smiles and they were GREAT with Kaleb and I. They answered all of Kaleb's questions (and there were a ton!) and took all the time he needed. They even showed him what a port looks like. The ACTUAL surgeon came and spent 30 minutes with him before and 15 minutes after answering his questions.
My God is a God of wisdom....

We were taken down to radiology instead of general surgery so that they could use anesthesia to put him under but not general anesthesia. Because of this, I was able to enter the room they did the surgery and be with him until he went to sleep which allowed me to keep Kaleb at peace.
My God works all things according to His purpose....

The surgeon listened to me and decided he would put in a PICC line. He did everything he could to make this easy on us.
My God is a God who provides....

When Kaleb woke up in the middle of surgery and was upset, they came and got me. They allowed me to gown up, put on the proper equipment and go in and STAY during surgery. I was able to pray with Kaleb, whisper in his ear, and be there for him.
My God is a God of comfort....

God sustained me and gave me peace. The surgery and blood did not bother me at all (it was really cool actually).
My God is the giver of strength....

The Lord is deeply rooted in my son. Last November he was baptized and he has a relationship with the Lord. What I was able to witness today completely touched my soul. If ever there was a doubt, it is gone.

Before both times Kaleb went under he asked me if he could pray. Of course I said yes. The words that flowed out and through my son almost brought me to my knees. I couldn't help but let the tears flow down my face, and as I looked up, every single doctor, nurse, surgical tech stood there with tears in their eyes. Kaleb spoke with wisdom that was far beyond his years. He and the Lord were talking and we were merely blessed to be able to hear this exchange. Kaleb prayed for each person in there, he prayed for peace, he prayed for healing, he thanked the Lord for many things and for each person present. I cannot do justice to what went on, but take my word for it. I have chills just thinking about it.
My God is the God of salvation.....

I am reminded through my son and through our circumstances how powerful our God really is. It reminds me of a song by Chris Tomlin "Our God". Here is part of it....

CHORUS
Our God is greater, our God is stronger
God You are higher than any other
Our God is Healer, awesome in power
Our God, Our God…

Into the darkness you shining
Out of the ashes we Rise
There’s no One like You
None like You.

Our God is greater, our God is stronger
God You are higher than any other
Our God is Healer, awesome in power
Our God, Our God…
Our God is greater, our God is stronger
God You are higher than any other
Our God is Healer, awesome in power
Our God, Our God…

BRIDGE
And if Our God is for us, then who could ever stop us
And if our God is with us, then what can stand against?
And if Our God is for us, then who could ever stop us
And if our God is with us, then what can stand against?
What can stand against?

Our God is greater, our God is stronger
God You are higher than any other
Our God is Healer, awesome in power
Our God, Our God…
Our God is greater, our God is stronger
God You are higher than any other
Our God is Healer, awesome in power
Our God, Our God…

_____
Thank you for the prayer and please know how much it is working.....

~Kristi

It's about time for some happiness and sunshine....

2011-07-24T13:45:00.000-07:00

We got the final report on the gram positive that came up in his blood culture. It was actually a contaminate from his skin. It was MRSA, but it is not in his blood and it was just on his skin (it is everywhere in the hospital) and contaminated the blood culture. That is GREAT news, a little happiness and sunshine for us. Originally, we thought he has MRSA in his blood which would have been devastating and a very difficult road. Praise God for this news! All the blood cultures did come back positive for the yeast though so that means it is really in there. This confirms the removal of the port is necessary. It has also been confirmed he is on the right IV's and meds so we don't have to change or add anymore medication right now. YESSSS!

Surgery will be tomorrow through radiology. He is NPO starting at midnight, but we will not find out until tomorrow what time surgery is because they have to "work him in". Pray he gets in tomorrow and early. He can't eat until after surgery and that is difficult for him. While he is sedated for the port removal they will try to place a PICC (central line through arm) so we don't have to do a peripheral in his hand. If they cannot or won't place a PICC, he will have to have a new IV started in his hand every 24 hours in a new spot because the meds are so strong and burn the veins. That would be very painful and hard on Kaleb as he doesn't have many peripheral veins left. They would also remove the PICC under sedation when putting the new port back in.
Come on PICC, let's make this happen.

I will update when I know anything about surgery. Keep those emails, FB posts, and comments coming. WE LOVE THEM and they lift our spirits!!

EDIT****Wanted to update you on items Kaleb has gotten so you know if you want to buy him gifts. Some of you told me you got this stuff even though you haven't dropped it off so if you see your item on here and have told me, it's you :)
He got a orca pillow pet
2 angry birds (yellow and black)
Phineas and Ferb episodes/movies (I can post specifics later)
Non transforming bumble bee action figure
Transforming Perry the platypus

Kaleb's wish list:
Dolphin pillow pet
transforming action figure transformers (bumble bee, optimus prime, any bad guy)
Rio the DVD (comes out Aug 2)
Ben 10 the ORIGINAL series DVD's
Gift cards to Walmart or Toys R Us
Diary of a Whimpy Kid DVD
Diary of a Whimpy Kid Rodrick Rules DVD
Free Willy DVD's-new or used (he only has Free Willy: Pirate Cove, not any of the others)

Any food gift cards or starbucks for mama and papa :)

My little petri dish

2011-07-23T12:07:00.000-07:00

Just so you know, I am very overwhelmed and I have not gotten much sleep. I am telling you this because I am a little on the anti-social/no filter stage. So just keep that in mind :)
Every time we see the doctor, I just dread it. EVERY TIME they tell me something new that he is culturing or growing. My son is a human Petri Dish right now.....

Ok, so Kaleb's blood tests came back for 2 more things. If you google these, please don't freak out, the internet likes to exaggerate and freak out so I like to ask his Doc's and they give it to me straight.

Kaleb's test came back positive for Mycoplasma (Walking Pneumonia) and Legionella which can cause legionnaire's disease.
Both of those respond to oral Erythromycin and both of these have been caught relatively early. Kaleb was at risk for these because he has CF. Most of the time, these are something that older people/at risk people get and if the normal population is exposed, your body just fights it off. That is the reason why Kaleb tested positive and the rest of our family are fine.

-We are still waiting on the final report for his lungs to see which strain of Pseudomonas(resistant or sensitive to antibiotics).
-We are still waiting on the final report of the blood culture for the gram positive bacteria in blood.
-The lab messed up his IGG test for Aspergillus so we have to re-test the next time they draw blood in the next few days to see if he has the allergic Aspergillus, but to be honest, this is the least of my worries.
-Kaleb will have a skin allergy test 2 weeks from last Wednesday to test for allergic Aspergillus
-Kaleb is on 2 IV's (Ceftazidime and Meropenum) for Bronchitis/Pneumonia, Psuedomonas, and CF infection
-We will add another IV if necessary when the final report on the gram positive comes back.
-Kaleb is on Oral Diflucan for the yeast in his blood/port.
-Kaleb is on Oral Erythromycin for the Mycoplasma and Legionella.
-Kaleb is on 1 inhaled antibiotic Coly-Mycin.
-Kaleb is on inhaled Duo Neb, Hypertonic Saline, Pulmozyme, along with the Coly-Mycin every 4 hours while awake along with the VEST. This will treat lungs.
-All of Kaleb's normal daily oral meds and breathing treatments have stayed the same.

-Kaleb will have surgery Monday (time to be determined) to remove infected port and they will stitch his old sight up.
-Kaleb will have a peripheral IV placed in his hand/arm to administer antibiotics between ports.
-Kaleb has to be fever free with no complications for 3 days before they will schedule a new port to be put in.
-3 days after removal of old Port, new Port goes in on the other side of his chest (more scars for my tough boy)
-Kaleb has to be fever free and free of any complications for 3 days post surgery #2 for us to be sent home.

Obviously that is a lot of info! Imagine how my little guy feels. We are very honest with Kaleb and we have told him everything he needs to know at his age and what we feel is appropriate. He has had time to cry, work through everything, ask questions of us and the Doc's, and pray about everything and today he feels much better about all of this. If you already didn't know how awesome my son is, just take my word for it. He is SO BRAVE, so wise, and teaches me more each day to trust in the Lord.

Please join us in prayer for some things:
-That Kaleb would have no fear for surgeries and IV's in his hand
-That Kaleb's pain would be minimal as both surgeries can cause a good amount of pain
-That Kaleb's stomach would be able to handle all the meds (all can and do cause stomach pain, diarrhea, cramping, nausea)
-That Kaleb and I would get to sleep and rest
-For Hannah and Dave as we are apart and to stay healthy
-For our family as this is hard on all of us
-For Doctors, nurses, surgeons that come into contact with our boy: wisdom, patience, clarity of thought
-That God would use Kaleb and I as a testimony to those we come into contact with here at the hospital
-For details regarding our jobs and work to be worked out with minimal stress and disruption

BECAUSE Kaleb is catching pretty much every bacteria, airborne illness, mold, etc. that can go around, Dr. Carey has advised NO VISITORS. This is not to keep you safe (so don't worry if you have dropped something off) but instead to keep Kaleb and his struggling body and immune system safe. He is fighting so much right now, we don't want to introduce anything else.

How can you help?
-Pray
-Leave comments for us (especially Kaleb) on our blog, FB,email (ispikem@gmail.com)
-You may drop off items for us at the nurses station (7 West at St. John's) or I can meet you in the lobby (just call,text, email first)
-If you see Dave you can pass things along to him as well
-Kaleb likes Transformers, Dolphin or Orca Pillow Pet, Transforming Perry the Platypus Plush at Toys R Us, Phineas and Ferb THE MOVIE (Toys R US), Plush Angry bird (he only has a yellow one)
-Gift cards/$ for/to Walmart, Target, Olive Garden, Pei Wei, PF Changs, Starbucks, QT, Wendy's (any food) for Dave and I.

Kaleb will be laying in bed for the next week starting Monday, in pain, not able to do much so any movies you think he would like, just ask and I will see if we have them or not. He can't think of anything right now :).

Feel free to post my link of this blog to your fb or email (it might be easier than trying to explain).

Thank you for your support and prayers. We COULD NOT do with without you. This was unexpected for us and very overwhelming, so be patient with us right now.

~Kristi

Edit** Address to send cards/stuff for Kaleb
1413 W El Paso St Broken Arrow Ok 74012

CF=stupid.

2011-07-22T17:08:00.000-07:00

Most days I can handle CF. Most days I don't hate it because it is our life and I have to just deal. But these last few days, zooie mamma, they really have been rough.

Here is what we know. Still have to talk with Doc tonight but here is the straight to the point.

-Port is coming out surgically Monday but not put back in....yet.
-Replace port surgically after at least 3 days of no fever and when antibiotics and anti yeast meds have had a chance to work(not sure day yet).
-Have picc line or peripheral line placed in port removal surgery to allow IV's until port is placed again.
-Pseudomonas grew in lungs (won't find out which on until final report in a few days).
-Aspergillus in lungs (don't know if he has the allergic one yet).
-Yeast in blood and port.
-Gram positive bacteria in port and blood (waiting to see which one after 72 hours (Sat. morning about) before treatment and what that means.
-No visitors in room until we know details on some of these bacteria (you can drop off or meet me in lobby).

That is all I know right now but I will update if and when I know more.

Hug and kiss your healthy kids tonight and don't take it for granted. It really stinks to have a sick kid, just sayin.....

Mystery...

2011-07-22T06:08:00.000-07:00

What is causing this come and go fever is a mystery. He has had 4 blood draws from the port and 4 from his hand in 24 hours. We are waiting on cultures from all of them. This morning he had no fever but they took it again and he has a 99.8 so we are staying on top of it.

Doc said no visitors until no fever for 24 hours. This is because we don't know what is causing it. We don't want to spread anything to visitors and we don't want him to catch anything else.

Some of you have asked what you can do! Pray and you can bring stuff by, you just have to stay out of the room. So I can meet you on the floor or lobby.

Kaleb likes Vanilla bean creme's from Starbucks, vanilla ice cream and shakes, french fries, strawberry lemonade from McDonalds
Transformer toys-any enemy, optimus prime, bumblebee
Angry bird plushes (vintage stock)
Dolphin or orca pillow pet (walgreens has them)
He is reading the Left Behind Kids series he needs #7 and up (we think there are like 40)
Perry the Platypus transforming plush at Toys R Us
Drawing paper and pencils

I like starbucks skinny vanilla latte (iced or hot) and skinny carmel machiatto (iced or hot)
gummy bears, red licorice, snack stuff, there are several places around here for gift cards....
olive garden, panera, wendy's, starbucks, Mazzio's, Pei-Wei, PF Changs, well anything would work really.

We have meals today but all other days are open!! Sorry we can't have visitors in the room, but until we can figure out what is going on we want to be careful.

Keep praying for answers for us because we are creeping up to the start of school and volleyball and I am tired of my baby being sick!!

~Kristi

Hurry up....and wait.

2011-07-21T15:54:00.000-07:00

Alrighty....

So I do not have any info that isn't more than a hypothesis but here goes.

Kaleb spiked a fever and it has been going up and down all day. Highest peak was 102.3. He has had 3 blood draws from his hand and 3 from his port in an 12 hour span.

Saw Doc for a few minutes this morning (he will be back tonight for an in depth) and he is concerned that this fever is from an infection in his port. What can happen is, there can be bacteria or yeast that can grow in the port and when you flush it (which we did last night to access it) you push that yeast or bacteria into your blood and your body responds with fever to fight that infection. We don't know if this is what is going on, but that is what he said it could be.

So, we have to wait for two different sets of cultures to come back to see if that is the case. If not, then we try to figure out what else could be going on. If his port is infected, it has to come out. That is major surgery and they can't put it right back, they have to wait until no more infection, then go back into surgery and replace. Meanwhile he would have to still have IV's and all his veins are shot which is why he has the port in the first place. This wouldn't be ideal.

We are also still waiting on his blood cultures looking for the aspergillus growth and if his body is having an allergic reaction. Tired yet? Ya, me too.

We haven't even begun to address why we are here in the first place, which is junk in his lungs. Treating that "CF STYLE" with many many many breathing treatments every 4 hours with Vest around the clock.

So...a whole lotta hurry up and wait and hoping that fever gets the heck outta dodge.

I will update when I know.
Talking to Doc tonight about visitors.

~Kristi

Kaleb Update

2011-07-21T05:15:00.000-07:00

Kaleb spiked a fever overnight, they came to do labs (again, poor guy) this morning and take blood from his port and his peripheral vein and they are doing blood cultures to check for infection.
Until we know what is up, no visitors. Not sure if he can catch anything or if he is contagious.

Today we have a nursing student BUT Kaleb LOVES our student today because he is a MAN!! He is just at that age where he connects with men better. After he introduced himself as a student, Kaleb started in on informing him of everything. After all, if he is a student, that means he doesn't know things, right? (This is how Kaleb's brain works). The student said he was going to listen to his heart and Kaleb proceeded to VERY S-L-O-W-L-Y say...(as he pointed to his chest) This...is....where....my....heart....is. (I had to turn around to keep from bursting into laughter). I love how Kaleb assumed because he was a student he needed a basic anatomy lesson. LOVE that kid.

Kaleb has had 2 blood draws from his "lucky vein" in his hand. It is one of the ONLY veins left he has that work, so he is sure to tell the lab as soon as they walk in that is the one they can use. It is precious. He walks them through which needle to use (butterfly only please!) and asks them to wait until he can count and hold his breath! Hey, whatever works!

CBC white blood count came back slightly elevated from last nights draw at 13.4, so we will see.

Keep the prayers coming, will update when I know more.

Slapped right back into reality....

2011-07-20T18:12:00.001-07:00

I usually can see this coming. After over 10 years of this, I am pretty good at guessing. But this time, I was thrown off guard a bit. Maybe I was in denial, maybe I was still on vacay in my head, but today when I up at 5am to workout at bootcamp, the last thing I had planned for this evening was Kaleb being admitted to the hospital.
First of all, if I knew last night was my last night in my comfy bed, I would have skipped workout and just slept in it.
Second, if I knew we were admitting today, I wouldn't have spent the whole day away from Hannah (she had a playdate) and not hugged her goodbye.

So the last 2 nights Kaleb had an increase in cough. Today, we had his normal monthly appointment but all day he was coughing, clearing his throat, getting up junk, asking for breathing treatments (that should have been my first clue), and complaining of a tight chest. We got a chest x-ray and then went to his appointment. At his appointment he blew 69% on his PFT's which is almost 10% down from 2 months ago and 4% down from last month.
He lost a bit of weight and his x-ray showed some fluid in his lower right lobe along with some areas that looked different than his last x-ray. Bronchitis for sure, hopefully caught it before pneumonia.
We talked to Dr. Carey and he said it was only a matter of time before Kaleb had to go in, so we decided on now, so he can be out by school starting. I REALLY hope we are out by August 1 since that is my first day of pre-season volleyball. Hoping he is off IV's by school. We will go home on IV's like normal. This should hopefully keep him out of the hospital all semester and help him not miss school, let's hope so!
We are waiting on a few tests. Blood tests to see if he is having an allergic reaction to the mold he grew last month (aspergillus) and if so, he could be on steroids for up to 2 years. If those come back negative, we still have to do a skin test for the same allergy but we can't do that until he is off antihistamine for 2 weeks (so 2 weeks from today). So if the blood test comes back positive we don't have to worry about the skin test, if the blood test comes back negative, we do the skin test too.
If he doesn't have an allergic reaction the the mold, we don't treat it, weird right?
We are also waiting on sputum cultures from today (takes 3-5 days) to make sure he is on the right IV's.

Pray for us and I will update daily here!!
Room 744 at St. Johns (we got a great room with a view!).
Visitors are ok, just call, FB, email, or text first to make sure we aren't doing some tests or something.

Hello, anyone out there?

2011-07-18T06:35:00.000-07:00

My lack of consistent blogging these last few months has made me wonder how many are really reading these days....

Well, for those of you who are, or for me to have record written down of what we have been doing. Here goes.

It has been a crazy and fun filled last month.

We went on Kaleb's Make a Wish trip the last week of June, came home for a day, then went out to California for our annual summer vacay with my parents. It has been a great last few weeks but my body is mad at me because it doesn't know what day it is or what time zone we are in. I couldn't sleep last night but forced myself to get up at 5 am for bootcamp to see if I can get myself back into some kind of routine.

David and I were talking about our Make a Wish trip. It was such a great trip. Once in a lifetime. He echoed some feelings I had been having.
It was such a great trip, we had such a great experience, it was our first family vacation together EVER. Kaleb was healthy, we didn't get lost in Florida, and I saw Kaleb smile more times that week than I can remember.
Maybe it is coming down off that high, maybe it is not being on vacation anymore, maybe it is the reality of our life setting in but.....I am sad.
It makes me sad that Kaleb even qualified for Make a Wish. I mean, think about it. He qualified for it because of CF. As much as we try not to think about all that, being on a trip where people are SUPER nice to you the whole time and give you "that look" every time they saw his Make a Wish button...it reminds us why were even there in the first place.
Don't get me wrong, I am NOT ungrateful. I AM VERY GRATEFUL. And I know that they have tightened up the qualifications for Make A Wish lately and some of our CF friends aren't getting to do Make A Wish. We are lucky, I know that.
But, it makes me sad he qualified.
I read a post on a CF board on FB a few weeks ago with someone echoing the same feelings. They were called by a wish organization and they said that it gave them mixed feelings. It does. And reading others saying that helps me know I am not alone.

Hanging in California is always bittersweet. I miss them so much and being in California reminds me we don't live there. We squeeze in 6 months of family time into 2 weeks. It was a great 2 weeks and we were able to celebrate my grandpa's 90th birthday with almost the whole family there (my cousins from NC couldn't come but their parents did).
I took over 800 pics (not kidding) and kissed and hugged my niece and nephew to the point where I am sure they were running away from me, but they are just so dang cute!

So now we are back to reality. Doctor's appointments, meetings, bills, emails, planning for fundraisers and back to school events, getting ready for volleyball season.....that just made me tired.

We got some news in California that Kaleb cultured aspergillus which is a mold. This is new for us and we will get a blood test Wednesday at his monthly appointment. I had thought we might admit before school starts but, he isn't culturing anything else and he really isn't having any alarming symptoms. We will see what the blood test says and his PFT's. If we don't admit, we HAVE to make it until the end of October because admitting during volleyball season almost killed David and I last year. Because of my job change, volleyball is the ONLY thing that is less than flexible for our CF obstacles. Besides that, it shouldn't be as stressful this year since I am out of the classroom.

I can't think of much else besides the fact that summer is almost over and that stinks.

Obstacles and Road Blocks

2011-07-11T16:13:00.000-07:00

Yesterday we visited my parents church in California which is the church I mostly grew up in. At the beginning of service, they introduced a missionary couple. The wife is someone I recognized as a girl I was in youth group with. Her father was the missions pastor at the church. They told of the mission field they were serving on including their path for the last few years. What touched my heart was when the Pastor was telling us how in 2007 they were getting ready to go on the mission field. They were training in Colorado and in a car with their 17 month old child and 2 other missionaries. They were hit by a car and their child and the 2 missionaries were killed. The father was ok, but the wife (the one I knew from church) was severely injured.
As the Pastor told their story and he got to this part I could see the woman take in a breath and hold it. They were still visibly shaken and upset by this tragedy.
What was more amazing was what their path included AFTER this tragedy. After she recovered, they continued to work state side with churches that served local mission areas and then they went oversees to do the work they had originally planned on.
They could have very easily stopped after that tragedy. That accident could have derailed them from the path God had them on. That obstacle or road block could have totally changed their lived in another direction. In some ways it did. They planned on serving with their child and now, just memories of that child accompany them.
It made me think about the things that come up in my life as obstacles or road blocks. How a lot of times, I allow these things to derail me from a path the Lord has put me on.
When hard times hit, it is very easy to use that as an excuse to not do what I know the Lord has for me.
Whether this family knew it or not, they encouraged me. They inspired me. I mean, if they can continue on and serve him, so can I.
Often times I use CF as an excuse. I let it be my obstacle, my road block. Sometimes, I allow it to do that before I even attempt something. An opportunity comes up for me, my family, or Kaleb....and I dismiss it. Never give it a chance.
I have been better lately at this, in regards to CF. I have been better at not letting it run our lives or keep us from living.
But, CF aside, I also let Satan and hardship be an obstacle. Sometimes, if something is hard....it is easy to run the other way or give up.
Instead of asking the Lord to be my guide and strength, I simply shy away from things because it is hard.
I am going to try to be better at that. To pray for discernment on what is something that maybe God is directing me away from and what is something Satan is trying to throw my way to keep me off God's path for me and my family.
What are your obstacles and road blocks keeping you from what God has from you? What is blocking your path?? Are you willing to hold tight to the Lord and continue on? Harder said than done.

Busy busy

2011-07-07T16:51:00.000-07:00

Shortly after we got back from Kaleb's WONDERFUL Make A Wish trip to Florida, we turned around and flew to California to see my family.
We had our Cali trip scheduled first, and it just worked out that we did back to back trips.
We are busy busy here hanging with family, celebrating my Grandpa's 90th birthday, visiting the Aquarium of the Pacific, Cars 2, swimming, beach.....so. much. fun.

I have a lot of things to post for Make A Wish and our visit here, so be patient as I will post them.

A little CF update. Kaleb cultured aspergillus (a mold) in his lungs. When we get back we will do a blood test to see if it is also in his blood and systemic or just in his lungs. That will tell us the best course of action on how to treat it. There are TONS of options from not treating it to IV's so we will see.

Enjoy your summer, enjoy your families, and enjoy each day God gives you....

Sneak Peak...

2011-06-30T20:10:00.001-07:00

We did so much in a week.....
It was the time of our lives.....
Words and pictures cannot do justice to how much fun we had....
Great family time together....
A trip I will never forget. The smile of Kaleb I will always remember....

Make A Wish

2011-06-23T16:41:00.001-07:00

Heading out to Make A Wish tomorrow....will update when we get back!

Summer Volleyball Camp 2011

2011-06-20T19:11:00.000-07:00

My helpers and assistant coaches (minus 2 other assistants)
Session 2: 2nd-5th grade (Hannah is in there by my head) silly picture. 15 campers and some assistant coaches.
Session 1: 6th-9th grade. 46 Campers and assistant coaches and helpers, silly picture
Session 1: Team Picture
Session 2: Team Picture
_________________________________________________________

I am blessed to have part of my job be one of my favorite things to do. I love volleyball and now that I don't play competitively, I love that I am able to coach. Every summer I run a volleyball camp at my school. For the last few years I have opened it up to more than just our school and because I coach club, I have a lot of girls from all over Tulsa that have come. Each summer my camp has grown and grown and this year I went to 2 sessions splitting ages. I think I might have to open up another week or session next summer as I was FULL for my older girls this year. Good problem to have.
It was a good first day of camp, although I am soooo tired. Being on my feet all day and REALLY excited makes you tired. Tonight I also had open gym for my high school girls from WCA and I am pooped!!
Looking forward to a good rest of the week and then we leave Friday for Florida!!

Summer!!

2011-06-17T06:18:00.001-07:00

Next week is my annual volleyball camp. I am really excited but a little nervous at the same time! My morning camp is FULL, over full actually. Should be busy and good. It is for 6th-9th grade girls. My afternoon camp is for 2nd-5th (Hannah gets to come to this one, first time for her!) and it has a perfect amount! It has a lot less kids but I am excited because this age needs a lot more one on one attention.
I have a lot of high school helpers and some adult coaches too. It is fun to see some of these kids year after year and then they transition into helpers and then some of them into coaches! I am going into my 8th year at WCA and I have been coaching since 1998. I took a few years off in between being married and moving to Cali and back, but besides that it has been pretty consistent.
Camp goes Mon-Thursday and then Friday we leave for Florida for Make A Wish. SO EXCITED!!
We get back for one day, then pack up and head to Cali!!
We are going to spend a ton of time with family, swimming, beach, visit to an Aquarium there, more family, Grandpa's 90th birthday celebration. AHHH, I can't wait! I owe my niece and nephew some serious hugs and kisses, so Jen, tell them to be ready for AUNTIE !!!!

Dave officially started his Doctorate program at ORU on Wednesday. He is in a week intensive class and although it is a lot, he LOVES it. After the summer he will have a years worth done because they transferred a bunch of classes for him!

Although this summer is busy between my new job and Dave's doctorate program, we are so blessed and it will be a great summer for good memories!

Have a good weekend!

Random

2011-06-12T12:45:00.000-07:00

I don't have much to say, but I need to post more or you guys are going to stop reading!!

We are getting really excited for make a wish and our Sunday school and wish granters are throwing us a party next Sunday at church! We are very excited!!

TEAM KALEB has raised almost $6,000! Although that is under my goal for this year, I also did the Climb for a Cure in the fall and we raised over $4,000 then so between the two we blew my goal WAY out of the water. THANK YOU to all of our supporters!!

Kaleb's culture came back clean this month, which is surprising but good. We have one more appointment the week we leave (next Tuesday) and we will culture then too. Kaleb is doing well so that is good for our 3 weeks of vacay!

Have a good week!

Make A Wish

2011-06-09T07:10:00.000-07:00

I apologize for not blogging more regularly. My laptop broke a few months back and we didn't have money to replace it. Then I found out I was getting my new job and with it came a new laptop and the day has arrived where I have a laptop again! Hooray! I could never blog at work because it was blocked and so that is my excuse!!

Ok, so a lot has gone on in the last few months. I am not even sure what I have shared and what I haven't.
I do have a new job: Director of Development. I am no longer in a classroom which provides flexibility with Kaleb and the things I am responsible for are right up my alley. Fundraising, publicity, working with volunteers, etc etc etc.

We leave for Make A Wish the 24th of this month!! We are going to Florida and staying at Give Kids the World Resort. We fly in on a Friday and will get situated at the resort. Then Saturday we go to Sea World and Kaleb gets his very special behind the scenes tour of Sea World!! He is sooooo excited! We also get 3 days at Disney parks, and 2 days at Universal! It will be an awesome trip of a lifetime! We also get to meet Jesse and Kristen Peterson (Fatboy blog) while we are there. Kaleb is just as excited about this as he is about the Make a Wish. We have been communicating over the internet and mail for the last year or so (maybe longer, I cannot remember). Jesse has CF and is my age! He has really connected with Kaleb and per Kaleb's request (I wanted to mention it but didn't want to be pushy) we will be connecting with Jesse and his wife for a face to face! There are some rules we will follow because CF'ers aren't supposed to be too close to each other but we are still going to meet in person!! YEAH!!

So, that is our mini update and Make A Wish info! I hope to update much more often!! Thanks loyal followers!

Team Kaleb 2011

2011-05-21T18:54:00.000-07:00

Kaleb's classmates that come year after year and one of his teachers from this year.

Team Kaleb 2011

One of Kaleb's docs, Sarah. Dr. Carey is on a missions trip to Columbia but the rest of the office and docs and even some nurses from St. John were there today. Love them.Traditional team pic by the CFF sign

Our team got a pic by the firetruck that came today

We made the top 10 fundraisers for this year and as of today we were the #6 ! Kaleb got to go on stage and accept this award! So cool!

My two precious kiddos. They love each other and it makes my heart happy. Hannah is such a good sissy and donated all her change and some toothfairy money today. My nephews Jacob and Zach did the samething. Melts my heart. It isn't the quantity of money, it is the thought. Every penny counts.

Our reason for our passion. My hero, Kaleb. We are praying for a cure buddy! We are doing everything we can to raise money and awareness!

Another year of the CFF Walk has come and gone and it was a great one!

We are still shy of our goal but I am very happy with how much we have raised. As of today we have raised $5,531.40 and I still have t-shirt money to deposit and a few more donations that are coming in. I hope to get past $6,000 by the time we are done and I think we will.

At first I was discouraged because I had a stretch goal of $10,000 but then I was reminded that I did the "climb for a cure" in the fall and pulled in over $4,000 then. With both fundraisers combined, I will hit my goal of $10,000. Even though it wasn't all for the walk, it all goes to the same place and it is all within the same "year" (May to May) so I am very excited!! That is the most we have EVER raised!!

Thank you to everyone who has donated, supported us, walked, and prayed. You can still donate and it will go to this year's total!

Click on the GREAT STRIDES widget to the top right of this post and it will take you to TEAM KALEB 2011 account.

Here are some pictures from the walk today. We had aboutu 30 walkers of Kaleb's friends, classmates, teacher, and family. It was a great day.

Moments....

2011-05-07T16:12:00.000-07:00

This is our Team Kaleb shirt this year. I tried to move it to the bottom but blogger hates me.

This week has been filled with so much emotion. The Lord welcomed 3 babies into heaven this week. My friend Cathy and Mike (last post) both lost their babies. A friend we used to go to church with and she coach cheer at our school went in to find out the gender of her child and they told her the baby was gone. I can't imagine....

It has reminded me the precious nature of life and that despite struggle and heartache, we are so blessed.

We are getting close to the CF walk. About 2 weeks and we are about half way to our goal. You can donate by clicking on the widget to the right of my blog.

Our t-shirts are ordered and will be in the week of the walk. LOVE THEM this year.

I leave for Belize tomorrow. I am chaperoning our senior missions trip and I am very excited. It should be a great week.

Kaleb grew staph and pseudo but both are sensitive to antibiotics, so we are trying those for 30 days and re-culturing.

Thanking the Lord for the moments we get....

Walking this road with Grace

2011-05-01T16:29:00.000-07:00

There has been a lot of things to pray about lately. As I have been on my knees about two families I know that both are having issues with pregnancy and premature babies, I am reminded what a precious gift children are no matter the diagnosis.
One family is a fellow coach whose twins were born at 26 weeks because of Twin to Twin Transfusion syndrome. Please lift the Christie family up as both twins are very weak and need a lot of prayer to grow and be strong. Mia, one of the twins is very bruised and she is bleeding in her body and brain a lot. Her dad sent me a picture of her and it broke my heart. She needs healing.
Another family is the Kennedy family. Cathy is a friend from high school and college from church. She has 4 children and is pregnant with her 5th. The amniotic fluid level is low and they told her this week she would lose this baby. Of course, we are praying for a miracle. Something she wrote on her facebook caught my eye. She asked for prayer that she would be able to walk this journey and trial with grace.
That made me think about our journey. So often, it takes all we can to just journey. To make it each day is an event in itself. But to be able to walk the road the Lord has put us on with grace, now that is something I had not thought of. It encourages me and inspires me to see those words, to see someone asking for that to be prayed for.
It is important to me that as we travel this road, that we do it with grace. That amongst all the choas and heartbreak, it is evident the Lord is with us and His grace is upon us.
So in her struggle and in her heartache, my friend Cathy is allowing the Lord to speak through her.
I pray that she can make it through no matter what the outcome, and as I pray that God and His grace will flow through her, I am reminded to pray for that for our family as well. I am reminded that as we journey on our path, it is important that we strive to do so with grace. His grace.

No technology....

2011-04-19T16:58:00.000-07:00

Not having a computer stinks. Having no phone stinks even more. So, if you feel ignored, don't take it personally. I have no way to communicate.
Kaleb has his monthly CF appointment tomorrow. He started Cayston yesterday and he lost his sense of smell again. He is all clogged up in his sinuses and his cough started. I will talk to the doc and see what we are going to do. I leave May 8 for a week to Belize and our Make a Wish is at the end of June. I hope we can make it to the end of school without the hospital.
Pray for Kaleb if you think about it. He is struggling. He hates CF. I mean HATES it. He is having such a hard time and this is new territory for David and I. Being a parent is so hard, add CF to it and man.....I am worn out.

One month until the CFF Walk.
http://www.cff.org/Great_Strides/Kristianneristiowers

We are collecting donations and about 40% to our goal. Click on the link and donate!!

I will update when I can!

Good reading...

2011-04-10T16:44:00.000-07:00

The ebb and flow of life brings us up and down. The day in and day out of CF brings us heartache and joy. The last few weeks have been both tough and wonderful. And so is life.... There have been so many questions from Kaleb. So many things he is contemplating and wondering. So many things he is struggling with. As a mother, my heart breaks when he is sad, when he is struggling. I had posted on facebook that Kaleb was struggling with just having CF. Being different. Life span and expectancy. The why's of it all. Then one of his Fibro's Jesse posted two great posts that were both wonderfully honest and exactly what our whole family needed. You can find them by clicking on the 2 links below. This is the first: http://www.cffatboy.com/2011/04/what-is-it-like-to-be-different-because-of-cystic-fibrosis/ Here is the 2nd: http://www.cffatboy.com/2011/04/finding-meaning-in-the-trials-of-life/ If you are reading this and you are part of our family/friends and don't deal with CF on a regular basis like many of my readers who are parents of CF and patients with CF, PLEASE read these. Jesse is a man who is David and my age and he has CF. Kaleb has bonded with him, although he has never met him. They have exchanged notes and Jesse sends Kaleb messages through me. Jesse had consoled and encouraged me over facebook, blogs, and the phone. Jesse loves the Lord and he and his wife life a life that I hope my son one day can live. The deal with CF both openly and honestly and he is a respected voice in the CF community. Both posts address and have helped Kaleb (and David and I) and I think by reading these, it might give you some insight to some things we and Kaleb struggle with and think about. I hope we can encourage others with CF like Jesse has with us. They are both good reads, check them out! ~Kristi

Hannah Banana

2011-04-02T07:08:00.000-07:00

Hannah played volleyball this club season through Team Tulsa. This is a local club I have coached for since we have lived in Oklahoma. Hannah played in the youth program and I was one of the coaches. She had practice every Sunday and two festivals. We finished up last week and I wanted to share some pictures. You can also find 2 photo gallery's on the official Team Tulsa website here. Look under photo gallery off the main home page. Hannah is #11 (my old number) so you can find her in these pictures and some on the website. She is wearing a tie dye head band in most pictures as well.

Thankful Thursday

2011-03-31T04:33:00.000-07:00

Today I am thankful for my new job and my husband. Dave is away for 3 days at a middle school science/survival camp with our school. I am thankful for his help with the kids (especially treatments, meds, night feeds), his company, seeing his face at work, and just grown up conversation. I love my kids and we have fun when he is gone (how did my car pull into that drive thru?), but I REALLY miss him and absence does in fact make the heart grow fonder. I am thankful God has given me such a wonderful man and that I do not have to do this single parenting thing long term. I just don't know how some of you do it!!

A little hope from Oklahoma.....

Bunco For A CURE....

Dr. Carey Returns....

Sunshine in the Rain....

Kaleb update...A New Journey....A New Diagnosis.

Team Kaleb Total

Soapbox.

Home.

Worlds Collide....

Sharing our story....

A light at the end of the tunnel-Day #12

More than just basketball games....

Day #11-Update

Tupperware Party for Team Kaleb=40% of sales!

Whoo hoooo-Update Day #9

Wednesday Update-Day #8

Team Kaleb is kicking boooooty!

Tuesday Update-Day #7

Kaleb Update Day #6...START PRAYING

A Simple Challenge

We are on Day 6 in the hospital and we have had 2 awesome donations to TEAM KALEB since we came in. Can I get 4 more people to donate (one for each day) today? Any amount! Let me know you are and I will keep track!! Who is in? ANY AMOUNT!!!

My Random Thoughts...Don't judge me.

Paradigm Shift....maybe. Day #4 Saturday

Raise money for TEAM KALEB

Kaleb Thursday Update-Day #2

Kaleb Update-Wednesday Day #1

Vomit doesn't celebrate Anniversaries....

Moganko For CF!!

A new understanding for Hannah....

Happy 11th Kaleb

Blogger Challege and $11 Birthday Challenge

The $11 Challenge

This link for credit card donationshttp://www.cff.org/Great_Strides/Kristianneristiowers

Congratulations David!

Random...

Something Good....

Last Chance!

www.pamperedchef.biz/Jodicook4u.

A healing Thanksgiving....

Kaleb is on the RADIO!!

Order Pampered Chef for CF!

I am currently doing a Pampered Chef fundraiser for Cystic Fibrosis for the month of November. If anyone would like to help out a great cause and raise money for TEAM KALEB and the Cystic Fibrosis Foundation, and to help find a cure, please go to www.pamperedchef.biz/Jodicook4u.

Click on "Our Products" Tab, then click on "how to purchase" tab. In the blue box where it says search for a host, type in Cystic Fibrosis Foundation, and search for host tab.You should be directed to a link that says Cystic Fibrosis Foundation, Kristi Bowers.

Click on that and feel free to shop. If it asks you for a code, please enter G3R2

Follow up to PTSD CF Caretakers Study

Interesting CF Caretaker Study

Raising money and kickin' some CF booty....

Order a purple bow/flower...RAISE money for CF!!

Post it's, Lists, and Check Marks...That's How I Roll...

Following up...

Translating Joy...

Kaleb is my hero.

Trusting your gut and God....

Raising money for a Cure!

Weird....

Frequently asked (or implied) questions....

Monday Night Update

Kaleb Monday update

Kaleb update Sunday

Kaleb update

Enjoying it all....

Keeping Hope Alive....

2011 OCSAA State MS Champs!

What I learned from coaching....

How Did I End Up Here?

The lessons I learn....from God.

It is all coming together....

A whisper to God....

Updates

Share the prayer love....

Fundraiser for adoption

Urgent Prayer Request

And we keep going....

Going home...

Blog Spotlight....help a friend in need

Why I share...

Good news...

One tough cookie....

Time set for surgery #2

Time to get praying....

This link for credit card donations

http://www.cff.org/Great_Strides/Kristianneristiowers