Feeding...UGH! (Is that proper enough?!? HA!) Jaime continues to receive Speech Therapy on a weekly basis. His speech is progressing significantly...his new "big word" is "BECAUSE." It's so stinking cute to hear this little guy say, "behhcause" yes, there's a long "h" in it. His therapist said that he's about 4-6 months behind in talking. He knows all of his numbers 1-10 and many of them up to 20. He knows many of his shapes and all of his letters! We're working on colors...which for some reason has been such a challenge for him. As for feeding...he's got the oral skills of a 0-6 months old. He's not moving his tongue right at all, nor is he chewing. (Chewing in the functional sense, he does "chew" but it's more of a mashing.) Having said all of that, we're going to try a new tactic with Jaime...we're going to wean him from the sippy cup altogether. This is his only means of comfort, so we have to be very careful in how we do this. For starters we're going to move to Dixie Cups (Dad, you were soooooo on to something when we were there! ;) and special therapy cups in which Jaime's therapist is ordering for him. We'll see how that goes.
As for PT/OT, he had some regression with fine motor skills and toe walking and is back up to each of them being twice a month at home and once a month at Broadmoor. Speaking of Broadmoor, we have had the unique opportunity to take advantage of their "Help Me Grow" pool time. I take Jaime there for pool therapy twice a week! He LOVES it!!!!! The water is 90+ degrees and the air temp is warm...they have all of the toys, floats, etc. that you can imagine for us to use! Jaime even got to use the slide...though I didn't have my camera that day! Also new from Broadmoor are Jaime's ankle weights. We're borrowing them to see if Jaime wearing them will remind him to not walk on his toes. We call them his "heavy socks." He doesn't mind them too much. Not sure if they're completely helping or not, but they're certainly worth a shot!
The other news in Jaime's World is that we're still pending another trip to Cincinnati to plan for his upcoming surgery. We were supposed to get a test called a colonic study done...it's a test to basically test the colon function, but we haven't been able to quite schedule that in a timely manner. Having said that, Jaime's surgeon is still pretty eager to have us come down. We're also due to see cardiology and check in with GI again for the digestion issues Jaime continues to have, so we'll make an extended trip to get our visits in. I'm thinking (hoping) this trip will happen in October! We'll see!
On a fun note...Jaime and I had the pleasure of meeting up with a LOCAL Right-sided CDH family today! Michelle is 19 months old and was treated at The Cleveland Clinic, diagnosed at birth. She's amazing! Her and Jaime got to play at the park for a few hours this morning. It's so great to have a local family to relate to! The kids even have the same pulmonologist in Cleveland. :) We literally live just a few minutes away from each other! We will definitely be making more play-dates with the kids in the future! :)
Continuing with exciting news...last weekend we drove to Green, Ohio (about an hour and 20 minutes away) to participate in Max's Walk/Run for CDH Awareness. Max was born and cared for in Cincinnati, he fought a GREAT fight, but ultimately chose wings over feet. His amazing parents, Erin and Shawn, set up this walk/run in his memory. Also in attendance was the Hess Family. Their son, Adam was born in Akron with CDH and ran, completing the race like a SUPER STAR! It was WONDERFUL watching him cross the finish line....
Below are some pics over the last few weeks!
My 2 favorite guys with haircuts!
Reading the new Lego Magazine.
Swimming at Broadmoor's Pool!
New ankle weights.
At Max's Walk/Run for CDH
CDH'er Adam, crossing the finish line!
R-CDH'ers Jaime & Michelle
"Shell" & "Mamie" As they called one another! :)
http://www.orlandosentinel.com/health/os-ucf-nih-grants-20110902,0,2102771.story
Well, it's almost time for Jared to come home, so I should close! Until next time folks....
link speech therapy and many other therapies helps us to improve our health.
ReplyDeleteTreatments make improvements in our physical health. We should more know about them.
ReplyDelete