Posted (Tina) in All Posts on March-31-2008

Today was an overall good day for Ella. She was in a happy mood and smiled a lot. That makes the day more fun.

She did exercise her independence when we decided to go to the physical therapist. As soon as the session started, Ella decided that she wanted nothing to do with it. It was uncomfortable and she just didn’t want any part of it. In a proactive manner, I decided to increase her oxygen flow, but even after lots of calming and cuddling, I could barely get her to settle down. Finally after working herself up real good for 20+ minutes, she simply wore herself out and fell fast asleep in my arms. She didn’t even move much when placing her in the chair to drive home.

The PT acknowledged that maybe she moved too quickly today for Ella. Also, she noted that this needs to be a very slow process and felt that even bringing Ella for this session is another small step in the right direction. I did let her know that this is typical behavior for Ella whenever she has to try something new. Just like when we placed her in the car for the initial time, she had a melt down. Hopefully, the more exposure to the environment and the PT, the more Ella will get used to the idea.

The PT allowed us to borrow this chair that will help Ella sit up. Since Ella had such a meltdown, we were not able to try it at her office. However, later in the day, I was able to try the chair at home. Situated with the boppy around it, I can adjust the angle of the chair. I started with Ella being in a reclined position. Over several minutes and lots of distraction, I was able to prop it higher so that she was in a more upright position. She tolerated it for about 15 minutes total.

We did not make much progress with feeding today, although she still took one bottle for 55ccs. That is still really good work for her. All of the rest of the feeding sessions ended up at 15-20ccs, but at least we had one stronger session.

Today was the first ever CDH Awareness Day. It is so good to see that organizations are cropping up to make a difference. One year ago when we received this diagnosis, there were few organizations, websites, blogs, etc. Just this past year, it has grown tremendously. Although we were not able to be out in public participating, we hope to be more involved in the coming years.

I just keep looking at our daughter in awe of what she has endured and who she is today. God made her perfect. She is so beautiful. I love her so much. We’re so thankful for her.

We’re continuing to pray for direction on the best way to make it back to Colorado. We have a decision to make in the next day regarding timing and ask that He would give us divine guidance.

We’re so thankful that God provided the resources for us to make the trip to Florida and give Ella Renae the best chance at life. And now we’re excited to think about going back home to Colorado and enjoying our life together as a family with all the comforts of home.

Thanks for the support and prayers.