Jaime Albert Trost was diagnosed with Right-Sided Congenital Diaphragmatic Hernia at 19 weeks gestation. He was born at 34 weeks gestation on 4/16/09 as a hemophiliac with his liver and intestines in his chest. Jaime had his 1st repair surgery at 23 days old. He re-herniated in September 2009, causing his bowels, kidney and liver to be up in his chest. He had his 2nd repair surgery at 194 days old. Though Jaime still has many medical challenges ahead of him, today he is a thriving KINDERGARTENER who has beaten the odds!

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Tuesday, January 5, 2010

A "New" Jaime?

Jaime's shirt says it all...and boy was he! LOL!

Today, I am pleased to announce that Mr. Jaime has FINALLY reached 16lbs....16lbs 1oz to be exact! :)
Also a new fun thing to share is his sitting ability...check out the photos...who knew?
Kathy, our EI PT whom we LOVE!

Who's that big boy?!?

Who needs therapists when we have Jared?!?

Big boy all on his own this evening.

Seriously, Mamarazzi, must you photograph EVERYTHING? YES, I must! :)

That's right, his Early Intervention (EI) physical therapist knew! She said to forget about the rolling, let's get him sitting up now! Kathy and Miriam (EI specialist) from EI came this morning. Since Jaime has been approved for Waiver, we were talking about some therapeutic items that may be helpful for him. The girls mentioned a "sitting bench." I showed them the 5 in 1 toy that "Santa" brought for Jaime...we flipped up the seat and flipped down the play table and ta-dahhhhh...Jaime sitting properly! We were told by all of the therapists here in Cleveland and Cincy that the Bumbo seats are terrible for these babies and that it's better to let the babies support themselves using their own muscles (with assistance). So, that's what we did today! Jaime did awesome, in no time he was sitting all by himself! I was so proud of him! This "bench" just opened up a whole new world to him!
As for other therapeutic stuff, Kathy got Jaime on all fours today. He was on his knees rocking and everything...she is AMAZING! I always tell her that she needs to be Jaime's full time PT. I LOVE my visits from the EI therapists..they are so enthusiastic and so appropriate with Jaime...meeting his needs, not just going by some therapy book. They also are a wealth of info!
Later in the day, Jaime's "normal" therapist came. We also had Jaime's nurse here at the same time...boy she didn't appreciate that! (LOL) She did actually work with Jaime, but as usual insisted on the rolling thing. She literally rolled him back and forth like a ball...ARGH! Then, she held him up on his feet trying to show us that he is weight-barring on his left leg. Once she held up his right leg....down he fell! He can stand on his right leg with his left leg up, but like I said, no such luck the other way around.
Back to Kathy from EI...this bench sitting position allows us to lay our hands on Jaime's lap pushing support down on his left leg, just for him to get used to the feeling. We're still not sure how all of this will pan out, only time will tell, but it doesn't hurt to do little things!
In the midst of our 4 visitors, we had Fed Ex and UPS stop by with medications for Jaime, this is the middle of a snow storm.
Here are some pics out of our front and back window this afternoon.


The phone was ringing off of the hook today, too....GRAND CENTRAL STATION! Tee, hee! One of the calls was from our Case manager assuring me that the Waiver program does indeed cover CCF therapists, regardless of any insurance I have! YEA! I talked to Cincy, they were going to fax the Rx to the Cleveland Clinic today...HOPEFULLY by next week, we'll have a new therapy team in order! (Fingers crossed!)
That about sums up our day!

3 comments:

  1. He looks like he is doing really well. Glad you got waiver, we are meeting with our service facilitator today with a my plan for Anna. One more thing to learn more about, so we will see how that goes. Cincinnati, well we would not know what to do with all that snow. We are expecting 3 to 6 tomorrow, some of us are freaking out just thinking about it. Glad everyone is doing well. Hope you get your therapy issues figured out soon. It makes things alot easier when you have people that you are comfortable with.

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  2. Yay!!! Go Jaime!!!!!!! What a handsome sitter!!!!!

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  3. Jaime looks so awesome sitting like a big boy! Cool 5 in 1 toy, never seen it before. As for the Bumbo, maybe that's why Emily never liked sitting in it, although we weren't told anything negative about them. Good luck with getting the new therapists. The ones that are actually worth while having!

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