Jaime's World: CDH DAY TOMORROW/Ortho Needed

First of all, just another reminder for you all to wear your turquoise in honor and support of all CDH patients! Jaime and all of his CDH Friends Thank you!
We'll be having a balloon release tomorrow after Jaime's CCF OT session! Hope it's a nice day! :)

Here's Jaime sporting his new turquoise vest from Titi!
(Oh and that's his new sippy cup, too)

Now on to boring medical stuff! Jaime's feeding lately has been a roller coaster. He's doing GREAT with his sippy cup...he loves it so much he wants it all night long-that's another story! Anyway, as for "eating" some days he refuses everything or gags on things, while other days he does awesome! Today was an OK day. He gagged a little while Lorna, his new CCF speech therapist was here, but she assisted him in regaining control. By dinner tonight, he ate an entire jar of baby food! YEA!
As for wanting the cup at night...well, Mr. Jaime has a really bad habit of waking up way too much at night. Lately, it's anywhere from 3 to 5 times a night, taking a 5oz. "cup" each time. The amount of formula he drinks at night is CRAZY! His therapists said that he's so busy and focused on gross motor stuff that eating during the day isn't important, but he realizes he's hungry at night. That mixed with his sensory issues make for long nights for all of us!

Let's chat about therapy! Today was the official start date of our CCF therapists. As I mentioned, Lorna was here today. She's very nice...and as I said earlier, was able to help Jaime control his gag. After she was done, Kathy our Early Intervention physical therapist was here. We addressed Jaime's left leg issue. After evaluating him, this is what she discovered: his legs are two different sizes, with the left one being shorter. He's compensating by twisting it out. Also, his pelvis is shifted and he does not have any lumbar curve and has a prominent sacrum. When he stands he stiffens everything and locks up, again, trying to compensate his weakness in his trunk and legs. She gave me exercises to do with him for the weakness...actually it's "tall kneeling" play and squatting. We are also going to probably have to become friends with a good Orthopedic doctor. :( What's really frustrating is that I have brought this up with our other therapists and they dismissed it. Also, Kathy looked back at her records, it was the left leg that a few months ago he wouldn't weight-bear. He wouldn't weight-bear because he literally couldn't! So, that's the deal with that. The CCF therapists have been notified of this and will continue to work on non-invasive ways to "correct" it as best they can. He may need lifts or braces in the future, hopefully no surgery! We will be addressing it with the drs. in Cincy next week.

As for new things Jaime's doing...well, sometime in the last week, he's turned into a monkey! He's climbing...or at least trying to. He crawls everywhere getting into all of Jared's things! He thinks he can stand and only wants to...as you read earlier, he has no trunk support, so it really is kind of funny watching him. He plays peek-a-boo, he waves...sometimes, oh and he now makes "raspberry" noises with his mouth. We're trying to get him to "blow" so he can blow his candle out...in TWO WEEKS, he's only done it a few times so far. (We still have time!:)

Oh before I go...some of you have been asking how Jared is, overall he's just fine. For those of you who don't know, Jared took quite a fall on the playground at school yesterday causing a trip to the ER. We were there for several hours, after IV Factor (in which I administered), lots of ice and a CT scan, we were discharged home with our hematoma and closed head injury paperwork. Jared had a big growing bump on his head and small abrasions. After a few doses of Factor, ice and resting today (he stayed home from school), the swelling is starting to go down. He told me before bed that his head was really hurting again. I'm hoping he's well enough to go to school tomorrow. My friend, Michele, found turquoise awareness stickers for Jared's class...and we have chalk Easter eggs for them, too. Jared's very excited about sharing this stuff with his friends.

Here are some pics to enjoy!

Jaime literally grabbing the plane from Jared.