Kyle update:
I got this late of Friday night and haven't had a chance, until now, to get it posted here.
Thank you for your continuing support!
Hello everyone!
Well I haven't written in a while but as I've said before, no news is almost always good news when it comes to Kyle.
We have stopped the Gabapentin for a five days now. He was down to once a day last week and this week, nothing. We are trying to watch very closely for changes in his coordination and range of motion of his ankles/feet. I spoke with the physical therapist on the phone this week. She was just calling to do a follow up, so she gave me many things to test and watch. She asked if we wanted to bring him in again or just have her call again in two weeks. I chose that option because we have not noticed any changes and Kyle has not complained about any pain. We prefer physical therapy over the drug, but again, we will have to see how he is doing. One thing that has changed is his extreme moods. There is a definite difference. Now if he throws a fit about not getting something, it looks more like a typical 3-year old and with a little firmness, he can be talked down. That was not the case before. He is still jovial and happy, but he is not laughing like he is a little crazy. I know I didn't write examples of his extremes before, but it was stressful to deal with him. It has been a very different week this week. For that, we are grateful.
We had some confusion/trouble with the lab on base, so I didn't write earlier in the week. However, we finally got the results of his blood tests yesterday afternoon, and his ANC was 2200+!!! That is probably the highest we have seen it since the first week of chemo. We expect it to actually be a little lower on Monday when he gets his blood work done again, but should remain higher than the past few months. Again, he will not get chemo again until Sept 19th.
Overall, Kyle is doing very well. We recently purchased a new bike with some money from wonderful friends. He rides it twice a day, most days, and it has been great exercise for his legs.
There is still stress over germs at school (2 kids in his class were at school Tuesday, then out sick Thursday) and frustration/sadness over not being able to go to friends' birthday parties because of where they are held. The moments of sadness are getting further apart, but they are reminders that we are not to "normal" yet.
Katie had a yearly check up this week, and it was with the doctor that we saw when I first went to the doctor with Kyle. It was the doctor that knew something was wrong and acted immediately. Then he texted me about what was going on and even visited Kyle in the hospital. I had not seen or talked to him since the beginning of June. I have to say I was strangely tense about even going back to the doctor's office, let alone seeing that same doctor again. He immediately asked about Kyle and how Kevin and I were doing with everything. He really is such a great pediatrician and made the kids laugh during the whole appointment. Even though he did a good exam of Katie, he asked a lot about Kyle and even asked if I wanted him to look Kyle over while we were there. We are so blessed to have such a wonderful doctor. I feel like we (well I) got over a huge hurdle by having a good appointment at the doctor's office. We really needed a "normal" visit.
Everyone is getting into the routine of school and after school activities. Even though we are settled, the next two weeks will be extra busy and then some calm again. On Saturday, Oct 1st, there is a "Touch-A-Truck" event in a nearby town that the Make-A-Wish people recommended. Our wish granters for the big wish have talked to the organizers about getting Kyle a little bit of special treatment. We aren't sure what all will be happening but we will be wearing our Make-A-Wish shirts, and all the participating "trucks" will know that Kyle is coming.
We have been enjoying more quiet moments at home to play Legos and let Katie craft and just play. Strangely enough, through the chaos of school and more activities, we have found more time to spend together. We are looking forward to more time together as fall begins. Sending wishes for a wonderful weekend to all of you!
Good to hear he's doing better
