Since I last wrote on the subject of appointment updates, I have had the busiest kid on the block! We got the results back from the EEG=normal :) We took another short trip to Indy to see the neurosurgeon. She gave us another opinion on the helmet issue. She suggested that we do positional therapy super aggressive style. Basically, put him on the opposite side and keep him there at all costs. She even suggested velcro, safety pinning and stapling to the floor...no I am NOT kidding! Another thing was I had to switch sides when feeding him. He has to be fed sideline which means completely sideways. I am right-handed so I has holding his head with my left hand therefore putting all the pressure on the left side of his head adding to the problem. She worried that the added weight of the helmet would hinder his development and she added that most insurance carriers wouldn't cover the helmet. On the spine issue, she wants to do another MRI since the first one was done at 50 days old. Fixing the spinal issue, could alleviate the kidney issues. At the end of October, we will do the MRI and see her again. At this time, she can revisit whether or not he needs a helmet and also decide if surgery to release his spinal cord is needed.
Wednesday, we spent the night at the hospital in Evansville so a sleep study could be performed. We will get the results back in about a week for those.
Thursday, we had another swallow study done. We have recently started cereal and wanted to make sure their were no issues with him aspirating. We also were questioning whether he had matured enough to feed in a "normal" position(no sideline) without aspirating. We found out that he is fine eating cereal and he can now feed sitting up!!! Awesome news!
He is also doing great with all his therapies. He is getting better head control, reaching for things, and keeping his hands open more of the time.
Thanks for all the prayers, support, and encouragement!
Tyler is a rockstar and he impresses us with new tricks daily :)