Hurry up and wait

We have been doing a lot of waiting at doctor's offices since Simon was born. Most of all, we've been waiting to hear when his first surgery will be. And we're still waiting. But today the orthodontist said he's making enough progress that he will recommend to the surgeon that we schedule a date. We still have to wait 2 weeks for the next appointment before we get the date, but it will probably be 4 weeks from now more or less, when he is 12 weeks old.

It's great to feel like we're making progress, and we're very anxious to be done using the NAM (palatal obdurator) which is helping shape his nose and narrow his palate cleft. We were not pleased to hear that after surgery he will have to wear a nasal stent for another 2-3 months to continue shaping the nostril on the cleft side, since that means more devices to clean and more tape on his face, but obviously we want to do everything we can to minimize the need for "nose revision" surgery later on.

At today's visit, we also were able to meet a 16 year old boy who was born with a similar cleft and see what his palate and gumline look like now. He was gracious enough to let us take a look while he was getting his braces adjusted. The palate looks pretty different from a non-cleft palate, but no one is going to be looking at that. The gumline looks great and he seemed like a happy, well-adjusted kid. Then we did our part and went to show off Simon to a couple that had a 9 day old baby so they could see how the NAM looks and how comfortable Simon is wearing it.

Simon was a good sport about all of it, and only cried after an hour when he got hungry.

A Dangerous Man

While Simon was exercising on his tummy the other day, he accidentally scooted himself forward and flipped himself over onto his back. I had put his arms and legs underneath him to help him practice pushing up, and he is stronger than I thought. Scared himself to death and screamed his head off after that. We have to really keep an eye on this guy, there's no telling where he could end up.

Father's Day

Simon has had a busy week. He seems to have gotten happier and more settled in the last week, allowing him to eat more, sleep longer, and give us lots of sunny smiles. Just in time for Father's Day. On Saturday we took him out to the boulevard for a little picnic. On Sunday, my parents, sister and brother in law came over and we went out to dinner... at a restaurant! We picked a place that is just around the corner and has a big outdoor patio, so we could walk Simon around and his crying didn't bother anyone. I had to take him home a little early so I could give him a bottle, but it was great to all get together, and be somewhere other than our apartment.

Starry Night

Story Time

"They say" that it's never too early to start reading to your baby. But I'm just not convinced that Simon's very interested yet.

Smiles!

I finally was able to capture a couple of Simon's shiny smiles on camera. Papa makes Simon smile by pushing on his belly button or making faces for him.

1 month old

Simon is now 1 month old. Every day has seemed like its own epic story, but it has gone fast. We had our 1 month pediatrician visit today, and baby Sy is gaining weight well. He is absolutely average weight, which feels like a victory considering everything that's been going on in his mouth.

We had another visit to the cleft team yesterday for a NAM adjustment. The orthodontist said he thought we might have surgery when Simon is 8 or 10 weeks old. This seems overly optimistic to me, since it's usually more like 10 to 12 weeks, but either way it could be coming up pretty soon considering he will be 5 weeks old already on Thursday.

Simon has been a happier and calmer little guy with each passing week. We are starting to see smiles and just a little reaction to our games and goofy voices we do for him. We're looking forward to more fun times ahead.

Ears, Nose and Throat

It's been another busy week for Simon. On Wednesday we went to Rush to have his weekly NAM adjustment - he's growing so fast at this stage he needs it fine-tuned every 7-10 days. We can already see that it's making a difference in the shape of his nose when we have it out to clean it. He has adjusted to eating with it in, and actually he is eating more than ever now. He has gained almost 2 pounds in his first month, so he is right on schedule.

Today we went to see the pediatric Ear, Nose and Throat specialist (ENT) to check out his ears. The doctor used special tools to look into his tiny ears. He has some fluid built up in his inner ear already, which is very common for cleft kids. Luckily he does not have an ear infection yet, but we will probably have them put tubes in his eardrums during his lip surgery at 3 months so that we can make sure his ears are draining properly. That should reduce the risk of ear infection and guard against hearing problems, which is very important during the time when he is developing speech. The tubes will not be visible, and they only take about 15 minutes to put in.

The ear tubes eventually work their way out of the ears on their own, and he will eventually have 3 or 4 sets of tubes over the course of his childhood until he is maybe 8 years old or so. By then his palate muscles will develop to the point where his ears will drain without the aid of tubes.

In fun news, Sy is giving us dreamy smiles as he drifts off to sleep. We're hoping for real waking smiles soon. His Mom-Mom was able to feed him his bottle the other day, the first time someone other than mom and dad has succeeded in a whole feeding. I think pretty soon he'll be a chubby little dude.