Palate Recovery #4 - On the Mend

Judah is starting to move forward again. The surgeon said his repair looks good so far, but wanted me to talk to his ped. about the eating issue. I decided to talk to his OT first, who was here yesterday. She said that he's learning how to swallow and even breathe again, because his anatomy has changed. We think that's the likely reason for the eating and sleeping stuff. Yesterday I was able to get some breakfast and lunch in him, and today I distracted him with Sesame Street and got some yogurt down! I'm definitely encouraged, and so thankful for his OT's help! Last night was better, too. He wasn't as restless and only fussed once overnight. He was even able to get some deep sleep...which means Mama got some, too:) I'm trying to imagine what it would be like to have to re-learn how to breathe and swallow. I can't envision it being anything but weird and uncomfortable. No wonder he's having a hard time. We go back in 2 weeks and will be done with the restraints!

Judah also saw his Endocrinologist this week. He ordered a bone age (x-rays of arm and leg to measure growth). Just this morning I got the results, and his bones measure a little past the 18 month mark. That means he's less than a year behind in growth, and he's slowly but surely catching up! He's also officially on the growth chart for weight - go, Judah!

We also have some answers regarding Judah's Ptosis (droopy eyelids) and limited eye movement. The 2nd MRI came back showing no pressure or tumor in the brain, no inappropriate fluid. So, I talked to his ophthalmologist about it, and...long story short, he spent time on the phone with Judah's neurologist and geneticist and came to the conclusion that he falls into the category of a congenital muscular development disorder or syndrome. My words, not his which I can't even remember much less pronounce. By the way, let me just take a moment to point out that this ophthalmologist, which I've mentioned many times before because I LOVE him, actually called the geneticist, i.e. went the extra mile to thoroughly advocate for Judah, and the neurologist and got back to me within a week's time. This guy is AWESOME! Anyway, he has recommended that Judah see a surgeon at the Med. Center (University of Nebraska Medical Center) who will do the outpatient procedure that will open Judah's lids. The gears are currently in motion to make this happen. Any other eye issues we'll continue to work on with Dr. L. I'm so thankful that we're finally moving forward here and have an end in sight...which will mean Judah seeing without holding his own eyes open!

Recent moments of Celebration:

Judah pulled himself t0 stand against the Brothers' door and tried to reach the doorknob to open it!

Judah can pull himself up onto a small loveseat we have in the playroom!

He's learned the sign for "please"!

He loves taking baths now, and can sit up in the tub and play all by himself!

He's started to "bear walk" occasionally! (It's crawling on hands and feet, rather than knees.)