We asked the question, "Was the surgery a success?" a few weeks ago. At that point, we had to say time will tell. I am only his mom so I know I have bias, but I also expect the most and my answer... YES!! Although Ayden is not back to baseline in his gross motor, he is working towards gaining strength and working hard for his PT. The use of lefty and desire to use lefty is greater than it ever has been. My son is the happy go lucky kiddo he truly is and was after his first surgery, before the hydrocephalus. Although lonely because it is summer break, he is very HAPPY!!! There is no really value for this medically speaking, but we are thrilled. His speech is still slow at times and he is struggling with some pronunciations, but in that same breath, he is singing every song on every toy he owns! His love for music is apparent and we really want to try and get some music therapy set up again. His speech coincides with the music so it only makes sense. Parkview has agreed to take him back on their schedule for ST (as our speech therapist is expecting a child soon). This could mean a full day of therapy on Mondays, but grandma will do that again for us when the school year starts up. We truly feel this redo was the answer to our prayers! Even the complication of the shunt malfunction was a blessing in disguise. If he had not had the hydrocephalus again, they would not have noticed the closing of the ventricle to the left side and fixed it. Now we know both sides are draining properly and unfortunately, we also know how fast and what a shunt failure looks like for Ayden. We also know Ayden's CTs are not going to be easy to read for Hydrocephalus and want to talk to the neurosurgeon more about this next week at the follow up.
We have had a crazy week of odd occurrences, but with a log of the activity and some research into labs during his stay at CC we found that Ayden was actually very high(well beyond therapeutic range) for one of his AEDs. We have now reduced it to his previous dose he was on prior to surgery just a few months ago. This allow the medicine to work, but not cause side effects we saw at specific times after his meds were taken - loss of gross motor, nausea/vomiting, fatigue, blurred vision. We started the new dose on Sunday night and Monday morning, he had OT/PT, 2+ hours in the car, short times outside in the heat, and yet was fine ALL DAY!! Unfortunately, our pediatrician didn't buy the idea that his AED was causing these problems and directed us to CC. It is a holiday week and we had a healthy kid all day yesterday so we just didn't see why we needed to go. We called back and let them know we would not be going and we hope our pediatrician will forgive us for being bullheaded parents this time. We also hope that we have enough evidence to share with our neurologist in Cleveland next Tuesday to prove our point and why we changed the dose. When we get back next week we hope to stay FAR AWAY from Cleveland until November for his 6 month appointments. So far we are SEIZURE FREE!!! :)
Answered Prayers - not medical miracles... Our Bubba is here because God has a greater purpose for him and he has things to teach others. We watched some brilliant minds puzzle over our child in these past few weeks and only with the Lord's guidance the answers were found. Thank you all for the prayers, if we played the odds game Ayden would have gone to be with God more than once. We cannot thank everyone for all the thoughts and prayers sent our way for months and for that matter for the past four years. Thank you!
