Tuesday, January 18, 2011

Finally...an update!

Sorry for taking so long to update the blog, we have been busy with the holidays and trying to adjust the the cold weather and snow!
Nikolas has been doing great since his first lip surgery. They placed stents in his nose and they were held in by a stitch in each nostril. Well Nikolas managed to pull one side out somehow, or the stitch just broke and it wiggled out. Either way, I had to cut it off of the other one so that he wouldn't pull the remaining stent out. The one that is still in is the important one anyway, it helps hold his nose up and is helping stretch his columella. The stent is not fun, it gets clogged and crusty and I am sure if Nick could find a way to pull it out he would!
He has also been given a diagnosis of probable CHARGE. He actually tested negative for the gene, but we were told that only 60-70% of people who have CHARGE actually test positive for the gene. They said they were leaning more towards the CHARGE syndrome because of the hearing loss. Plus, genetic testing is so expensive I think that they will wait to do further testing until Nikolas develops more or they think he might have characteristics of something else.
Either way, it doesn't matter to me. I just hope that people don't describe Nick as the CHARGE boy or the kid with CHARGE syndrome. No...he is a little boy named Nikolas who has CHARGE syndrome. I don't want his diagnosis to define him, he will have a personality (as we discover more and more everyday!) and that is what will define him.
We have quite a few appointments coming up, including his next surgery for his formal lip repair, on February 24. We also have a cardiology, nephrology, neurology, otolaryngology, plastics and OT appointments in the next few weeks. Brianna also has an annual cardiology appointment next week to add to our madness!
Nick had a great Christmas and we had lots of family come in town so we were able to spend lots of time with our family and Nick got lots of cuddle time with everyone!
He is eating much better these days, except that he refuses to eat his milk without adding Fruit Punch flavored pedialyte to his bottles and being very warm. He is very picky but I am just glad he is eating and gaining weight, slowly but he is up to 13.6 lbs now and his cheeks just keep getting fatter and fatter!