Thursday, October 8, 2009

Appointments, appointments

Well, I wanted to update everyone on things with the boys. First, they are still healthy after their weeks of illness :) This week was a week of follow up appointments though with lots of specialists. This week we have been to the Neurologist, Ophthalmologist, Geneticist, had a hearing screening, and had a speech evaluation. All in the last 4 days. Parker has qualified again for speech and language services as well as continuing PT. He can understand a lot of what is being said but his speech sounds/amount of words he says are behind. We do work on this all the time...talking and singing with him :) The Neurologist and the Geneticist this week had differing opinions on Parker's diagnosis. The neurologist scheduled Parker for an EMG next Tuesday to look at nerve/muscle conduction. He believes Parker may have Congenital Myasthenia but when we saw the Geneticists the next day he wanted to test Parker for Congenital Myotonic Dystrophy. Parker's chromosome test was normal the last time we saw the geneticist but he wants Parker tested for other genetic neurological problems. This had been talked about in the past and I was tested as a possible carrier for Myotonic Dystrophy. I had an EMG to test for this and it was negative. I am not sure why we have to go down all these roads but it may help us get more support for the boys down the line. Hopefully the EMG won't be too painful for Parker :(
I personally think that my boys are the most perfect boys in the whole world!

I wanted to write this in the blog to keep everyone up to date and also to possibly be a support to other families who may be spending so much time and expense trying to figure out exactly what the underlying cause of their child's developmental delays are.

Thank you to all our wonderful friends and family. We love you!


2 comments:

Liz said...

The boys are so handsome and getting so big!! Praying you get some answers for Parker. Glad you're getting some time off from school to be with them. :)

The Hines Family said...

Thanks for the update. We will be praying for you guys.