Saturday, June 22, 2013

Update

I don't like change. I have said it before. I try and try and try to adjust my expectations and process when things aren't what I thought they would be, but I still go through this emotional process everytime.
But it seems like now, more than ever, things are changing. It is part of life I suppose. Relationships change, people change, circumstances change, health changes, and it goes on and on and on.
I think it may be that I don't like change I can't see coming or don't expect. Because when I know the change is coming or I am the one initiating the change, typically, it is ok.
I am trying to process all the change going on right now.

But one thing that hasn't changed it that we get to see my family soon! Excited to get to visit and go back to sunny Cali!

K's appointment went pretty good. He gained 3 more pounds in a month which puts him up 6 1/2 since his admit in May. This is pretty significant weight gain for him and we are hoping to get him up to 80 pounds soon. He is at 75 1/2 right now and almost 5 feet tall. In the summer when we are home and I can make him things at any time, it is pretty easy, I hope we can figure something out for when he goes back to school. His pft's were up from the last visit (they were 54-59% then) to 61%. I am glad they are up but that is still lower than his baseline was. It was hanging in the mid to upper 60's. I am hoping it continues to go up and that this isn't permanent. K begged Dr. C to allow him to not do nose nebs on vacay and he said yes. He has been doing them for a while, so a few weeks off should be fine. We will go back to the normal routine when we get home and then in the fall start a rotation of 1 month on, 2 weeks off, 1 month on, etc.
We didn't get a very good sputum sample, so I am not sure if it will grow anything, but his cough has picked up a little, so we will see. His port flush was painful this time. It didn't flush at first so we had to reposition it and that seemed to cause him pain. It usually doesn't hurt him. He was pretty mad about it.
We finally got an appointment with a counselor for K. We can't see her until end of August because of the wait to get in but I think it will be worth it. She specializes in kids with terminal and chronic illness and takes our insurance. I am glad we finally figured something out. Thank you Lisa for helping us get this all together (a mom of one of my former volleyball players).

Volleyball camp was great. I had 56 campers and lots of helpers. It was a great week doing what I love.
Session 1: 5th-9th graders

Session 2: 2nd-5th graders


The kids got to go to a cool museum here in town last week. We went with Auntie Michelle and all the cousins. It was the first time we had all been together in a while. The cousins go from 14 years down to Lizzy who is a few months old. They all get along well and the older ones help with the younger ones. It was weird having everyone together as they are all getting so much older and things have changed so much but it was a great day.
Only missing Lizzy, she can't stand yet.



No comments: