Jul
22
    
Posted (Tina) in All Posts on July-22-2008


Ella was having a good time today rolling around on the carpet. She does not have the skill to roll over by herself, but you can tell that she wants to do it. So I was guiding her and helping her get to certain positions.

Also, she is getting more skilled at taking the binky in/out of her mouth on her own. While I was photographing her, she even offered the binky to me!

Her PT appointment went fair today. The therapist and I spent more time discussing strategy. I tried to stress that I think the way that we are doing exercises is too much for Ella. You have to be tricky with her. The key is going so slow and breaking down simple physical tasks to the point that Ella does not realize that she is working.

For example, we want to teach her to roll over. When she is on her side, her arms and legs need to be in certain positions to roll over. Right now, the positions are not a natural thing for Ella. So I suggested that I could try working with her each day to ensure that her arms and legs are in the right position even when she is just on her side, distracted by her toys. With repetition, Ella will start to lay in that position more naturally. If she does that on her own and her body is in position to roll, she may even try it more herself. The therapist was very receptive and mentioned that she might even give Ella’s prior PT a call to discuss strategy too. She admitted that she does not have a lot of experience with medically fragile children, so the amount that you can “push” the kid to do is a lot different. Also, she wants to be respectful and learn Ella’s limits.

I really like the PT and want to continue working with her. Ella likes her too! I think we just got spoiled being in Gainesville and having a PT with so many years of experience. But at least Ella’s prior PT is open for discussion via phone on ideas and input to help Ella move forward. I think that will be a great resource for the new PT, especially in these early days.

Another CDH baby that we only know via their blog was readmitted back into the hospital last night. She is only 4 months old and reherniated – – her prosthetic diaphragm patch gave way and the contents of her bowel moved back into her chest causing a bowel obstruction. Praise God that the surgery went well today for her and that she is recovering.

This is always something that we worry about in the far recesses of our minds. As this other CDH mom shared on her blog, “We’re so used to seeing her smiling and playing and to see her looking sick and helpless again is heartbreaking.” This is my worst nightmare – – to have Ella get sick or reherniate. Every day when she retches, I’m always saying a silent prayer for no reherniation (she retches HARD) and also no micro-aspirating into her lungs.

We feel so blessed that she has been home from the hospital for nearly 6 months now and has been able to remain healthy. That is our continued prayer for our little miracle who will be turning 1 year old this Thursday. Our birthday wish is for continued health this upcoming year, so that she can grow and remain strong.

Looking at the little face below, I can’t imagine life without her. And just to think: a year ago today, I had just arrived in Gainesville and Josh and I went to see Ratatouille in the movie theater while Ella kicked around in my belly!