Here is the link to view the Doctors page, that we saw today http://genomics.unc.edu/faculty/webpages/muenzer.html People travel from all over the world to see him, and we are just lucky enough to have him basicaly in our backyard.
With that being said...
I feel pretty confident in the outcome of today's visit. I didn't mention before but Thomas was being tested for this syndrome http://en.wikipedia.org/wiki/Hunter_syndrome VERY SCARY! My heart goes out to all the sweet children and families who have to live with this syndrome. Dr Muenzer is the top doc for this. IN THE WORLD
Scott and I had to be at the hospital at 11am for X-Rays for Thomas, The did an X-Ray of every.single.bone. In his body, they had to strap him down, and he screamed the entire 45 minutes. My heart was littlerly breaking. The Radiologist came in and said he seems like a healthy little boy (our first sigh of relief) Then we had to go over to the Genetics Dept, where we would meet with Dr. Muenzers staff and they asked us a bazillion questions...by the time we got to meet with the Dr. it was 2:30. He examined Thomas and sat down to speak with us. He basically said the only reason we were there was because of his large head, which is a sign of Hunters Syndrome, and that during his exam he didn't notice any other symptoms.(PHEW PHEW PHEW) He said he was pretty confident that Thomas is just a normal healthy child (with a big head) and was relived to see he was showing no other signs, he did take a urine sample and blood sample, he said he didn't really think it was necessary but figured we would just get it done since we were there (which we will not get back for a couple of weeks) THAT will be the final end of this nightmare. But the Doctors words were very very encouraging...and I am SO BLESSED and SO LUCKY and SO THANKFUL for every.single.thing in my life, especially my children! ahhhhhhhhhhhhhhhh.
On the walk back to the car, Scott and I must have sighed about 1000 times. PHEW PHEW PHEW
Wednesday, August 8, 2012
Dr Muenzer
Posted by Rae at 6:16 PM
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3 comments:
<3 <3 <3 to Thomas. And to you and Scott too -- I know that had to have been so stressful! I can't even imagine having to listen to him scream; I would have been crying too. So so so so so relieved to hear that everything is fine! He just needs big hats. :)
ditto JOdy's comments ... I have prayed more this summer knowing Thomas, you and Scott had to go thru this... THANK YOU, LORD, for hearing our prayers <3 to all..
So relieved that everything turned out perfectly. There is nothing more heartbreaking to a parent than worrying about one of your kids - I am so happy you have that all behind you now!
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