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!

Joel Snyder on July 23rd, 2008 at 2:12 am #

Ella, You look like you are back to the same old tricks and I am happy to see it. That means slow and steady progress and believe me there is no hurry. I am at work and I can’t believe that a year ago I had just sent you and your Mom on the airplane to Florida. I hope you have a good day and I will catch you later. Love,Grandpa!!!!!!!!!!!!!!!!!

Barbara Mullins on July 23rd, 2008 at 4:03 am #

Wow, Ella, you’re getting so close to rolling over! Go Ella Go! I guess babies do things when their ready. My granddaughter can walk by herself while pushing a little cart, but if you try to help her by taking her hands, she just pulls down and sits on the floor! I think Ella is the same way – she wants to figure it out on her own. You guys just keep giving her incentive and do what you’ve been doing and next thing you know she’ll be rolling over to get that toy “over there”! Sometimes its hard looking at the photos to tell how big Ella is, so I always gauge her size by the pictures of her with her daddy. I used to think “why, she’s really putting on weight and getting bigger” and then I’d see a picture of Josh holding her and she would still seem so small. But in today’s picture with daddy holding her, she definitely looks like there’s been a growth spurt. She looks chunkier and longer. Go Ella Go! Tina and Josh you’re doing such a great job and being so patient with your baby. God hand-picked you to be Ella’s parents; He knew you’d have what it takes to be dependent on Him in order to let Him fill you with the strength and wisdom you need. God is truly doing a work in all of you for HIS GLORY! Keep up the great work!


Kelli Billman on July 23rd, 2008 at 7:57 am #

You can always look at it this way. The “feistiness” in her spirit she displays now with her PT will serve her well when the boys come knocking or someone gets in her way down the road!!
Say hello to Dr. Perry for us! We just made an appointment with him for September!

Kara on July 23rd, 2008 at 8:44 am #

One year ago my littlest one discovered that she had a cousin born on her birthday. That experienced changed her life. She has followed your development and prayed for Ella daily. She even at times sat down and cried for her sweet cousin that she was so worried about. Pictures of Ella were printed and posted all over our house. When Ella is strong enough I want to bring Deanna to her. They share quite a special connection even though they’ve never met. And tomorrow your little one turns one and my little one turns 11. What lucky mommies we are to have such sweet Leos. To our babies, may the continue go grow in the Lord and make us proud with their sweet demeanor and brilliant intellect.

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