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Latest Journal Update
We saw an allergist this week. He thinks R's rash is contact dermatitis, but because of one lab result that was high he thinks we need to investigate further. He made some recommendations for lotion and cleanser and R had some blood drawn. I have not heard back from the office, but when I look at the lab results, levels look non-concerning. As in true R form, he started with a rash again tonight. I am thankful for the technology of being able to send pictures and notes to our physicians' so these weird things can be documented in his chart. I do try not to do it too much, but I am not quite sure what to worry about.
I am waiting to hear back from Dr. D to see what suggestions he has up his sleeve for trying to get these seizures under control. I am so disappointed that our EPI bump did not result in better seizure control. We are potentially going to bump one of the meds he is on. He already has extra benzos on board, but I guess his brain has lost a bit of love for them because they're not doing what we want or what they have done in the past. This is just a losing battle, no matter how we look at it.
Griffin started football. He loves it. LOVES it. He's up early and off to practice just about on his own (with a little reminder from mom to roll out of bed). His games start next week. I anticipate these will be much more exciting games than the flag football games of elementary years. He's winding his summer down doing lots of skateboarding and helping Scott in the garage. I look at him and am amazed at how old he looks. I am not quite ready for that, but I don't really have a choice.
All is well. We're finding our groove with bipap and hopefully will find some seizure relief. I am crossing my fingers we'll get there sooner than later.