Boston Update: I updated on the Nuero appointment on Monday on the post below. ENT/ORL: Rahbar said the repair looks great when we did scopes in May and agrees a Brain/cervical MRI is something to be done. He wants us to continue working with feeding. We saw feeding but Mason isnt a fan of others watching him. Thankfully I purposely took videos on my phone to show his eating/drinking at home. He has made improvements but still needs continued help. She was making notes and telling me what she saw. I will be sending her notes our SPT locally who is working with him. He also passed a hearing test (which I knew he would). Rahbar just wanted to rule it out as a reason for delayed speech. Which has improved a lot in the last 1 1/2 yrs (due to speech/feeding therapy, surgeries, and PT). His oral motor sensory has improved but is still behind. I look forward to seeing her note/suggestions. They think his swallowing/choking may possibly be due to low tone/Nuero in nature, mixed with reflux coming up. For Mason most of his choking isnt while eating/drinking. Anatomically everything that can be fixed, has been fixed. Like I mentioned Nuero agreed with low oral tone, low core tone, some LE tightness, and some gait issues so right now its maintenance mode and seeing if their is a Nuerologic component. Surprisingly Mason is really good at making modifications or we have taught him, which allows him to function pretty well throughout it all. We continue all therapy...and continue to with preventing lung damage. GI/Pulm: We are keeping all meds the same. He isnt necessarily better but not worse. So we keep doing what we are doing and see with time. I get that, just hate it. You see your child get through it all but things arent normal...and we dont have a specific answer. They hope with time, age, and therapy things will get better. Immunology: Dr. Lee agreed with Pulm. to start back on prophalytic antibiotics, and try a new one, Bactrium for the winter. We also upped IVIG to every 3 weeks a well. His levels have stabilized for the past 5 months but he has got two infections in the last month. Hoping that will help. Definitely productive appts, just hate adding more things. So I guess we are taking steps forward but dont have any answers yet. We go back in 3 weeks for genetics/metabolism and MRI of brain/cervical spine. They all seem to realize there are several pieces of the puzzle. Trying to manage it all, prevent things from getting worse, and find an answer are all things we are working on.
Posted on: Wed, 29 Oct 2014 17:43:14 +0000
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