On Monday Tyler had no school so Beth and Erich and I met at Discovery Museum with the kids.
Jason decided he wanted to use the potty (he was not successful). Doesn't everyone use an old toilet paper roll as a telescope?
Tuesday my dad took off work, and we dropped Ty off at Beth's house bright and early, before myself and my parents took off for CHOP for Jason's brain MRI. The staff there was great and made the procedure as smooth as possible, but it was a long emotional day. It was so sad to see my baby put under, but everything went smoothly...except the fact that they gave him the "giggle juice", which made him drowsy, but then the procedure got delayed so that had worn off before it was time to put him under. He did well though.
The waiting room was the hardest part. Especially when it took more than an hour more than they said it would take!
When he finally came out of the procedure we got called back to be with him in recovery. They said he'd need to sleep 1-2 hours, and he looked so peaceful there, despite the ear plugs and nasal cannula so he could get adequate oxygen.
Of course he didn't sleep nearly enough.
When he awoke he immediately wanted to eat. However he was still highly medicated i suppose and could barely sit up on his own, let alone open and eat a cookie. Yet he insisted on doing this himself. He needed to have someone spotting him constantly, which he was not happy about at all, yet he was unaware how many times we saved him from tipping over. So sad, yet actually somewhat comical on some level.
We eventually were discharged, being told there were no "red lights" found in the MRI, so I was somewhat relieved that the results were positive. He remained pretty groggy and cranky on the ride home, but of course not sleeping like we were told he would do. Instead he insisted on eating. When I got home that afternoon my dad had to return to work and my mom had a meeting. Luckily Tyler had art club after school and Beth agreed to keep him after his club because Jason started vomiting shortly after we got home. He remained unable to walk properly, yet he thought he could do so. He required very close supervision...yet was unhappy about this. He could be compared to the most obnoxious drunk person. Not a pretty site.
In the midst of his puking and unpleasant status, his neurologist called. I wasn't expecting a personal phone call at all and I had to jot down notes on a nearby scrap paper while Jason whined right next to me. The neurologist started with the good news, that there were no signs of a brain tumor. HOWEVER (never something you want to hear from a neurologist), they did find an "abnormality" in his brain. He explained it as his brain protruding downward into his spinal cord. He said that it may or may not explain some of the issues we had been seeing with Jason's tremors and balance issues. He also said that it likely did not have anything to do with Jason's other developmental delays, but we would know more after following up with neurosurgery. Yes, neurosurgery. He told me that he wanted me to call the next day for a neurosurgery appointment, and that the "buzz word" was "Chiari". I asked if this was the name of the condition he had and he said yes, but told me NOT to google it because I would not be happy with what I read. He explained that this condition might not be significant at all and we might find that he would not require any surgery at all and would only have limitations when it came to sports. He also said that he wanted Jason to have a sleep study, because Chiari is associated with sleep apnea. He then said that the neurosurgeon would have to answer any further questions and told me to follow up after we see the neurosurgeon. Honestly, the rest of the evening was a blur....
Jason absolutely refused to let us turn his light off at bedtime that night (a first for him). And he was so exhausted that I was able to check on him without waking him.
I felt like the rest of the week was spent on the phone with doctors, therapist, insurance, schedulers, etc.
Our first strawberry that we grew! Tyler says it was yummy!
