May 25th, 2008

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, with a full head of copper hair, and is cranio free!
Unfortunately, Dillon’s grandpa (my dad) passed away on December 21st of an aortic aneurism. 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 do bone grafting to close the holes, and do some reconstruction on his forehead and orbits. 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:

May 18th, 2007

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.

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 🙂

January 4th, 2007

I hope everyone had a wonderful holiday and a safe happy New Year. My apologies for the appearance change of this journal. It was updated to the latest version of WordPress and I haven’t yet changed the layout back to the old one (read:I haven’t figured out how to yet).

It’s been quite some time since my last update, but Dillon is doing well. He got to meet Grandpa (my dad) for the first time on the 27th of December when he flew here from Arizona. They hit it off well and we all had family portraits done while he was here.

At his last visit with Dr. Rao, Dillon was prescribed eyeglasses. He won’t wear them. At all. 😀 We’re hoping that once I pick up my prescription, he will be more willing to wear his. He has a follow up appointment this Friday. At the last visit, Dillon was very co-operative and allowed Dr. Rao to test his vision with his head tilted as normal, and then again while I held his head straight. Sure enough, his right eye indicated a muscle problem right away when examined with his head straight. After all this time, it looks like we have a definite answer to his head tilt thanks to Dillon sitting so well through the exam. It will require surgical correction, but Dr. Rao wants to make sure it is a chronic problem before surgery is jumped in to.

His speech is still showing a slow improvement, if I had to guess he’s saying about 12 words pretty close to perfect now. And although it may not always be understandable, he tries to mimic almost everything we say. We’ve learned quite a few ways to help him here at home from his speech therapy sessions.

We will be going to see Dr. Jackson sometime this month or early next month, it’s getting to be about that time. We hope to find out in the next few visits a more definitive answer as to when his next surgery might be. At his last exam the goal was to put it off as long as possible, but before he starts kindergarten.

Well, it’s late and I’m sleepy, so I’ll write again after Dillon’s appointment Friday 🙂

October 23rd, 2006

Doo-too is how Dillon says thank you. He could say it a hundred times over and the cuteness of it will make me smile every single time. I’ll hand him a cup of milk, which he will snatch right out of my hands, remembering to yell doo-too over his shoulder as he runs away. He’s also saying moo meee (excuse me) nah nah (night night). He looks so incredibly happy and proud everytime he says something that others understand. On the flip side, he’s expressing a lot of frustration when he isn’t able to communicate his wants or needs. He did have a follow up hearing test last week, which revealed a slightly further loss than the last test. His hearing could be slowly getting worse, or he could have been being a typical two year old focusing on everything around him rather than listening for specific sounds. We didn’t speak with the Dr. last week after the test, but I will be contacting her to see what her thoughts are on this.

Dillon has follow up with Dr. Rao, his ophthalmologist, next month, and begins ultrasound physical therapy for the torticollis on Wed. of this week. It was supposed to start sooner but we have had difficulty in determining weather or not the referral for it had been approved. That will most likely be two to three times a week, but we won’t know for sure until after the initial evaluation. The therapy will also focus on strengthening his ankles.
Speaking of ankles, his new braces are working out great. They fit perfect and do not seem to irritate his feet or ankles at all. Most of the time he actually seems to enjoy wearing them, and loves showing of the big trucks printed on the straps.

School is back in session and Dillon had his very first field trip to the cider mill with Early On. It was a family outing for the kids in the program and their parents, as well as the teachers and therapists. We all had a blast and have the pictures to prove it in his albums. Take a look, our little man isn’t so little anymore. I’m certain he’s gorwn about 57 inches since my last upday. OK, more like 2 inches 😉