Well it’s been quite a while since I’ve updated considering I didn’t even announce my pregnancy here! Dillon’s baby brother Aaron was born on 2/24/08 and is cranio free! It appears he may have the syndrome without the craniosynostosis, but we’ll find that out at his geneticist appointment.

Unfortunately, Dillon’s grandpa (my dad) passed away on December 21st of an aortic anurism. We were fortunate to have been in Arizona to see him just a couple of weeks before he passed.  

Dillon has been doing quite well. Both his hearing and speech have improved and he is talking in sentences now. He may not always be understandable, but he sure is talking. And talking. And talking. His next surgery is coming up very soon we think. Dr. Zakalik has sent us to see Dr. Jackson to discuss it. They will fill in the small holes that are in his skull and do some cosmetic reconstruction on his forehead and brow line. That appointment is in two days.

Since my last post Dillon has had his eye surgery. that went well and Dillon is a pro at wearing his glasses now.

that’s about it for now, I’ll update more after Wed.

 

Dillon’s little brother:

 

So Dillon’s learning quite a few more words. One of them being “sit”. He picks a spot on the couch and pats next to him while saying “sit” when he wants to snuggle with you. The thing is, it doesn’t quite come out sit, more like s*it. I’m sure the look on my face was a Kodak moment the first time I heard (and misunderstood) him say it.

He’s had appointments with Dr. Rao, Dr. McBrien, and Dr. Jackson since my last entry. His eyes are still a concern, so he will be having eye muscle surgery at the end of the summer. It’s a quick outpatient procedure and he should recover quickly. It will most likely also help the torticollis.

At his appointment with Dr. McBrien, she noticed his ear tubes had come out (normal, they usually fall out between 6 months to a year after placement). Unfortunately, the tympanometry test still “flat lines”, meaning his ear drum does not move as it should. He will be retested in a few weeks, and if the results are the same, more tubes may be put in. Â

Dr. Jackson ordered another 3D CT scan to see how Dillon’s doing, but we do not have a test date for that yet. Once we get that date and have the results, I’ll post more.

Our baby will be 3 next month, I can not believe it! Since he will be 3, he is transitioning out of the Early On program, and in to our local school district. He qualifies for an early childhood special education program that I think he will enjoy. It’s like pre-school, five days a week, but it’s a smaller class and they are visited by a PT, OT, and a speech pathologist. They use play to learn and improve in motor and communication skills. Most of the therapy will be in a group setting, but they will work with Dillon on PT and ST individually a couple times a week for short periods.

I’ve noticed my entried in here becoming less and less frequent, which I think is a good thing. Less updates means less appointments and concerns, and more time for Dillon to be a kid