March 1, 2014 by kruckr
This update is going to be pretty short. Most of this post is more of a photo slideshow from the past month. We are now past six weeks post-op from the lip adhesion surgery. All of that is going well. We’ll have our final post-op appointment with Dr. Obi in a few weeks and I’m hoping he’ll give us some idea of when the second repair will be at that time.
Cardio is still going well. In the neuro department we’ve seen a few small focal seizures in the past two weeks. They were brief and minor, but we’ve gone up on the Keppra to help. We’re still scaling back the Phenobarbital and I’m sure we’ll have another EEG sometime in the next few months.
In the PT and OT department, things are going a lot slower. He’s still working on supported sitting and neck control. I bought him a neck pillow at Walmart that’s helping his neck support while he sits in his rocking chair or swing. He isn’t rolling onto his stomach yet and is still pretty resistant to tummy time. I’ve found out that he really loves Baby Einstein, so sometimes we (daycare and home) put it on the phone screen in front of him to watch while he’s on his stomach. He usually acts slightly less miserable that way. In the speech department, his feeds are still going well and he’s still cooing and making sounds. However he’s started laughing and smiling a lot less since his lip surgery. We’ve caught him laughing and smiling a few times, but it’s less interactive.
As far as normal baby stuff, Henry has started to cut his bottom two front teeth. It’s made him pretty congested as well, so it seems to be a pretty miserable process. I’m hoping it won’t last too long. He’s taking to solid foods really well. His culinary catalog so far includes: green beans, carrots, sweet potatoes, butternut squash, peas, bananas, apples, pears and prunes. We’re also doing rice cereal and have started supplementing my breast milk with formula.
Sorry this post sounds so boring. I woke up at 4:30 this morning.
250 days old
Mommy was trying to get creative … he’s not impressed
Who you lookin’ at?
I realized today that I’ve never got a bath pick before. He’s not a huge fan of baths:)
Watching Baby Einstein in his rocking chair
Visiting with Grandma and Grandpa
Nice day for a stroll
Some ribbons I made for Rare Disease Day and me pinning a ribbon on a coworker (the awesome Mr. Thomas) during a jeans for genes day I hosted at Westview.