It seems as though every time I say things are going well for Kai he takes a turn for the worse.
Its nothing too bad (yet) but ever since his Avastin infusion on Wednesday he has not been himself. He is whiney and uncomfortable again. He has not slept well all week. I tried all of his meds, at different times, and nothing seems to help. He is not as miserable as he has been in the past, but I feel something is brewing…my guess is he is feeling kind of crummy because his counts are starting to drop, but thats just my guess.
Since I have been worried about his counts again, I made it a priority this week to get back into acupuncture. Since our first acupuncturist, Jacqueline, left for medical school we have not been going as regularly. We have tried a few new people who were all wonderful, but no one compares to Jackie. But we must move on. We are now going to Down to Earth Acupuncture where we see Emily. She is very sweet and has a daughter Kai’s age. Her practice works on a model of community acupuncture where she will work on several people in one space for a more manageable fee. So far she has seen Kai in her office alone, which as winter comes will be important to me that we are not around too many other people. Since babies only need the needles in for a short time anyway, this works out well for us. I like that she is focused on helping people that may not otherwise be able to afford the treatments, so I am happy to be supporting her business. Next week both Kai and I will be having a treatment. I am excited to finally try it out for myself too!
On monday we had our first visit with Orthopedics. We have been waiting for this appointment for a while and I was a little anxious for this one. I have been worried about Kai’s left leg since it started turning in and crossing over the past few months. It look pretty bad at this point and I was sure we were headed for some leg braces, but the Doc said it is ok for now. Since Kai is not bearing any weight on his legs right now the doctor felt we could wait a few more months and see how things look then. We did get a script for a soft back brace that will hopefully give Kai a little more stability when trying to play. The idea is it will give his muscles some input and help direct the muscle an him with his head and trunk control. It is not a corrective brace so he will not have to wear it all the time, just when we are working on muscle building or playing outside his chair. We went right over to the brace clinic and had Kai measured to the new brace should be ready sometime in the next few weeks. I hope it helps.
Other than that we had a pretty typical week.