Its been a while since I posted last as we just got back from vacation (visiting family and the KDVS gathering in Texas) late on the 27th, and now we have had and continue to have multiple appointments last week and this week. Plus everyone knows you need a vacation from the vacation when you get home, just to get back on the routine. I hope everyone enjoyed just a few of our vacation/gathering pictures. I cannot even begin to tell you what attending an event does for the family and these kids. Last week was a busy one with 5 appointments/school for Liam. We had two days of school, but also had 3 other appointments at u of m. Liam saw his PM&R (physical management and rehabilitation) doctor on Wednesday and that appointment went exactly like we expected. Liam is delayed in a lot of gross motor and fine motor skills, something we already knew. He did refer us on for a speech eval and move speech therapy. Liam currently gets speech at school, however we feel he needs more as does the doctor, so we feel this was a win for Liam. Wednesday Liam also had therapy with Ms. Stacy, and boy was he excited to see her. Friday Liam had to have a sedated MRI of his brain. He was put completely out for this, and the procedure took twice as long as the norm as he had a vomiting spell and had to have his lungs suctioned out. This made for a long day as we were at the hospital between pre-op and post-op over 5 hours. However Saturday his neurologist called us personally to let us know that the MRI came back fine. This mean visually his brain is fine, but of course we know there is function issues. Today Liam had a follow up with his audiologist, something we do every 6 months because of the hearing loss associated with his syndrome as well as the fact he has previous hearing issues (he didnt hear the first 3 months of his life). The testing was good other than it showed a non-functioning tube in his left ear, so we left that appointment and walked to the clinic next door, his ENT, and now have an appointment on Wednesday and it looks like he will be having replacement tubes placed again at a later time. We have five more appointments to go for the week with a big coming tomorrow with his GI doctor. We are waiting to see what the next step is for Liam as we know he has lost weight since our last visit, and while the vomiting has improved, we are still having issues. Tomorrow will tell us a lot. Once again we want to thank everyone that has supporting Liam during his journey, we cannot thank those that helped us get to Texas for the gathering enough.
Posted on: Tue, 05 Aug 2014 01:08:21 +0000
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