Cincinnati Update...

First let me back track...WELCOME FALL!!!!

Fall is upon us and it's chilly out, the perfect time of year for lighting the fireplace! :)

Here's a little update on what's happening here...
Jaime is becoming quite the proficient toe-walker...more specifically toe knuckle walker-NOT GOOD! Having said that, after careful PT evaluation, it's been decided that Jaime needs to go back to the Neurophysiologist to be checked out. There may be more to the toe-walking than we think....from a neuro standpoint. I'll keep you updated on when that appointment will be scheduled.

Also happening here in Cleveland...Jaime was supposed to have his sleep study tonight, but the hospital canceled it due to no cribs available...such a weird thing, right? He will now be having his study on November 2nd. I'm a bit bummed about this because this really is one giant piece to the puzzle for Jaime. I just hope he stays relatively "healthy" between now and then, otherwise they won't do it. Such a bummer for sure!
Continuing on with Cleveland news...Jaime will be having a stomach emptying test at Rainbows next Monday. This was actually ordered by his GI dr. in Cincinnati.

OK, now for the Cincinnati update...we had quite the whirlwind trip! We spent the night at Titi & Michael's house in Columbus and were made a WONDERFUL breakfast! Thanks, guys! Jaime got to play with Face (the dog) for a bit, then we headed south.

We were only in Cincinnati for 28 hours. (literally). In that time, we had the pleasure of meeting Tina and Owen at Ronald McDonald House (Tina just gave birth to twins last month, Warren (CDH'er) and Wesley. Sadly, they came at 29wks. and Warren earned his wings, but Wesley is doing stellar and was able to be transferred back to his home town! :) It was so great to meet them! Jaime and Owen played outside for a little bit before we headed to the hospital for his appointments.


Our first appointment was an Echo-cardiogram. I opted NOT to have Jaime sedated for this...we weren't entirely sure how it would go, but after how bad he came out of sedation last time and how bruised he got from flopping around like a fish, I was willing to take my chances in not having him sedated. I laid on the bed with him, the Childlife Specialist brought in a Buzz Lightyear Toy and a new Apple IPad 2...we put on Fresh Beat Band and that was it! He laid there like a champ! All of the staff in Cardiology were commenting on how awesome he did. Get this, were were literally in and out of the hospital in LESS than an HOUR! See, that's how good he did! :)
After leaving the hospital, we drove to downtown Cincy to check out the stadiums and visit the team shops. Jaime may have gotten a little something while we were out and about.

After that, we checked into our hotel and met The Luken's for dinner. Bev was going to come back up to the hotel for a visit, but Jaime decided to not keep his dinner down which caused us to call housekeeping and this is what she brought us...Only Jaime...I swear! HA!

After lots of cleaning up...we FINALLY went to bed. In the morning, Jaime got a "hotel bath."

Then, one of Jaime's favorite former NICU nurses, Jaime, came to visit and Bev did, too!


After their visits, we checked out and headed to the hospital for the afternoon. We were supposed to meet with GI first, but he was stuck in the OR, so Jaime's surgeon came over to find us. We had a very long talk with him, then Jaime's GI dr. came in. We all talked to come up with a "plan" for probably close to an hour and a half. So, here's the plan: Jaime will be getting a "full GI workup." We're starting the work up in Cleveland with the stomach emptying test, based on the results, Cincy will go forward in scheduling the remainder of the manometry studies. This means that we WILL be going back to Cincinnati sooner than later to have some GI studies done. The ones that they want to do require yet another trip to the OR and an overnight admit. These tests will determine ultimately what "major" surgery will be taking place in the future. Jaime's surgeon only wants to go in one time, we may be placing a feeding tube (g-tube of GJ Tube, depending on the results) and anything else that may need "fixed" will be fixed while repairing the incisional hernia. It's too hard to speculate at this time. We did, however, decide that when Jaime's incisional hernia gets fixed, that we will be having plastic surgery involved and we will be closing him with his own skin from his shoulder blade area. So, he'll have two "sore" spots, but we're all thinking it will be worth it in the end. And like I told the dr. Jaime's a boy, I don't care if he has scars! ;)
Once we were done in GI/Surgery, we moved on to see Jaime's Cardiologist in clinic. First stop was the EKG room. We got weighed and measured...29lbs and just about 3 ft. tall! :) We were worried about Jaime sitting still for the EKG, but as you can see...it wasn't a problem...thanks again to Apple technology! :)

Then, we were taken to Jaime's room where we waited for the dr. Jaime had a lot of fun setting up his own equipment while sporting his "Grammy-made" hospital shirt." Complete with a velcro front closure and arm closures!

The cardiologist came in and said that one thing Jaime WON'T need is another heart cath! :) He said his heart looks better and better each echo! YAY! Of course, Jaime's heart never was the problem. We were even told that his PFO (heart flap) has resolved! All good news in the heart institute. We're due back there in 6 to 9 months! Jaime's dr. is very conservative because he said that the pulmonary hypertension can come back...plus he's monitoring Jaime's sunken in pectus to make sure it doesn't cause any heart issues in the future.
After the cardiologist visit, we went to the lab to have the rest of Jaime's CDH study labs drawn and we got back in the car to head home. It was a long, rainy and windy drive, but we made it safely. We found Nana and Jared hard at work on their Haunted Gingerbread House.


Thank you, Nana for keeping Jared occupied while we were gone...and for doing a few projects, too! ;)
Today, we spent the day with my parents who were in for a visit. We had a yummy lunch with them where Jaime was once again well behaved do to Apple technology.

Tonight, rumor has it, Tom and I will be going on a date...WITHOUT KIDS! Thanks, Mom and Dad! :) (It will be the first one...probably ever...since having Jaime!)
So, that's what's going on in our neck of the woods! I'll update as appointments come up and results come in! Thanks to everyone for keeping up with us on this crazy CDH ride!