Sensory....sensory....sensory....

Don't forget to wear turquoise for me on March 31st.

So sorry it's been nearly a week since my last update. This has been "finals" week for me at school. I'm "off" now until Monday when I start my Microeconomics class! BLAH!

Anyway, updates on Jaime....hmmm, let's see...overall Jaime is doing well. He's crawling (moving more like an inch-worm really) forward. He's still practicing his "walking" with his stand-up walker and LOVES to stand! He's starting to roll, too. He's also getting 3 more teeth, his 2 top front ones are coming in at the same time. (Poor kid)

We've spent the last week having LOTS of therapy. In addition, to our normal therapy team, we had lots of Early Intervention visits. Mostly because Jaime's coming up on a year old and we had to re-certify him. Yes, he WILL continue to get EI. Here's a list of "issues" we are and will continue to be working on: First and foremost his sensory issues. We are now realizing that his sensory issues go far beyond just eating. We're fairly certain that they have affected his hearing, certainly his sleep and his overall sense of touch/feel. He will be having a hearing test next month in Cincinnati, we don't think he has hearing loss, per-say, just the sense of it. He's nonreactive to many sounds that should alert him to be reactive to. In addition, we've been working really hard on providing him with new textures to feel/chew. He's still a big fan of the hard textures, rather than soft ones. (The "sand" page is his favorite in the touch and feel books.) As for feeding, I've introduced many things...all to no avail. He continues to be stuck on Stage 2 baby food or thinly pureed homemade food. He was eating puffs, but this week he started choking on them. If I break them up, he does better, but I didn't have to do that before. It's weird, we're not sure why that's happening now.
The other things that will somehow need to be addressed are the fact that he has a lazy (left) eye. It's very subtle, but it's there. And now that he's standing and "walking" more, we've noticed that his left leg is shifted outward rather being forward in a standing position. This is most likely a "hip" thing, but we'll see. Finally, Jaime's pediatrician has made comment that Jaime's back muscles are already very misaligned which may inevitably lead to scoliosis. From what we hear, this is a common problem amongst CDH'ers, especially those with a patch on the diaphragm. Jaime does not have a diaphragm at all on the right side, so he has not 1, but 2 patches that cross his mid-line and wrap around his right side attached to the back of his ribcage. So, that will be something we'll be monitoring closely!
The last bit of news to share is that Jaime has officially been accepted as a patient of the Cleveland Clinic home care team! He was evaluated earlier this week and the therapists will officially be starting Tuesday. I was very pleased with the ones that I've met so far, I'm hoping they will be able to address all of Jaime's long-term needs! I, officially closed our case with the Rainbow Babies and Children's team yesterday. (YEA!)

Reminder that next Wednesday, March 31st, is CDH Awareness Day....wear your turquoise in honor of Jaime and all CDH'ers both earthly and heavenly. Many CDH'ers have recently been born and are currently fighting in NICU's all over the world, some have already grown their wings. Please continue to keep these little ones in your thoughts and prayers.

Finally, there's still time to send me your blanket donations for Jaime's NICU. We'll be going there in a few weeks! Thank you to those of you who have participated in this special event!

Lots of ball with lots of textures!

Playing with the wrappings from the raffle basket we won on Monday at the Wickliffe Swing Band Spaghetti dinner.

A builder like Jared!

Wait, is that the AT&T Commercial?!?

Standing in my pack-n-play!

Computer geeks! (Mommy finishing her term paper!)

What are you doing in here?

Big squeeze!

Ooo, Mommy's cell phone, fun!

Wishing everyone a nice weekend! (We're hoping it warms up here!) Enjoy the pics!