I had some time tonight to update the blog with new photos as we're closely approaching the big day. Jameson will be a year old on May 3rd!!! Its hard to believe a little 5 lb munchkin has blossomed into the little man we know and love today but here he is all 15 lbs 6 oz at the doctors office today! Still wearing his size 2 diapers and working hard in therapy almost every day of the week. :)
Just some quick updates for everybody who is following our story. Sleeping has been amazingly improved since our last post. He's been on hydroxyzine since March and it seems to finally be working along with the clearing up of his most recent ear infection. We are soooooo glad for this, not only for the obvious reason of getting more sleep but because the next type of med they wanted to put him on was a heavily addictive sedative and we weren't comfortable with that at all. Its amazing how after 3 months of not sleeping all of a sudden he's back to a semi-normal schedule. AMAZING!
Jameson was also fitted for a new helmet last week which we should be getting from the orthotist soon. We are happy to report that his doctor advises we have much more time to work with the helmet than a typically developing child due to Jameson's slow rate of growth. Anything to avoid surgery is a plus in our book!
We also received word this week from the U of Iowa that little man's genetic bloodwork came back negative for the SMC1a gene mutation. This is the second most common gene mutation for people with CDLS, after the NIPBL mutation. This basically means that Jameson is still a medical anomaly in that they haven't located which specific mutation he has thats caused him to have this disorder. The amazing thing is that he could very well have a mutation that hasn't yet been discovered or maybe just a handful of people in the world might have. Crazy how science and the human body work.
Thank you all again for checking in with us and keep praying for Jameson's continued progress in therapy and with his doctors and specialists. :)
No comments:
Post a Comment