I blinked and we are on Thursday! Where did the week go. I counted tonight and Andrew has 11 days of school left and 4 of them he gets out early and one is his track day! I always loved the spring semester of high school...pretty sure the teachers didn't, but when you could count 30 days of school in an 8 week period...AWESOME!
Anywho...The Chris front moves on...well, not sure about moving on, status quo seems to be my normal report. We have had some good news. His first round of genetic testing, which included the microarray and fragile X, came back NEGATIVE!!! At first I was frustrated because that told us something, but yet I felt like it didn't. Then when talking to Doc P, he reminded me that eventhough, it doesn't tell us what is going on, it's still a positive, because it means he doesn't have a syndrome. So I am basking in those results right now as that has been our only positive news since January.
We also got the clear to have our second round of genetic testing that includes the test for Sotos Syndrome. Dr. Isburg and Dr. Prestridge have both questioned this syndrome and he hits a lot of the symptoms, minus the mental retardation and cognitive impairment. I'm okay with that! The test takes 4-6 weeks and hopefully we will have an answer then.
We visited with Dr. Prestridge again on Monday and the "t" word was dropped again. She said at this time it looks like he will need to have a g-button placed (feeding tube) to help with the symptoms we've been having. She stated that he would still be able to eat table food, but all liquids and liquid meds would be through his tube. She suggested an upper GI to look at the anatomy before tube placement. It was ok and showed no signs of reflux which is what Dr. Prestridge was wondering about.
Then we consulted with Dr. Murphy, our favorite allergy and asthma guy, but this time we saw him for pulmonology. He said that although the changes that he saw in Chris' chest x-rays were slight, they were enough to warrant a g-button for liquids. His thought was that we may be amazed at how healthy Chris would be if he wasn't aspirating at this time.
It made a difference too I think, when I talked to him and was telling him that we had been on antibiotics since the middle of March. The longest we had been without an antibiotic was 6 days and had just finished another one since see Dr. Prestridge 2 weeks ago. He was going to talk to Dr. Prestridge and we are going to go from there. Other good news I guess was that he doesn't think there is an allergy relation. About time I don't have an allergy kid! Although, I'd sure take it vs epilepsy.
I haven't talked to Dr. Prestridge to get the for sure, for sure, but that call will be made today. I've been struggling with it. I've talked to Jen at length and Jess and am just battling it back and forth. The mom in me doesn't want it and has anxiety about taking his milk and sippy cup away from him and just typing it brings tears to my eyes. But the nurse in me, knows that it is best for him.
Today I need to call on Dr. Presetridge's office and find the plan.
We also have our date set for Denver which is June 6. I have lots questions. I talked with a nurse today and although she couldn't answer some of my questions she put me at ease with others. He still continues with the absence seizures a couple of times of day and will have a big seizure (aka grand mal) if he spikes a temp.
That is yet another reason that has us addressing the feeding tube. We are aspirating enough that is making us get recurrent infections, which then causes us to run a temp, which then leads us to a seizure. I can't confirm it, and especially after talking to Jess, I think the seizures are causing or are linking to the lung issues we've been having. Jess questioned if his seizure meds are making him just sleepy enough to make his swallow ineffective. We may never know.
I just feel like we are in this viscious cycle that doesn't have an end in sight. We'll get through it though. It's not slowing him down and he takes his lab draws like a champ.
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