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.

Joel Snyder on March 31st, 2008 at 9:46 pm #

Ella, It appears that you had quite the day and just checked out when it came to the PT part. It does appear that you got some needed rest. I am praying that you continue to do well with your feeding and I know that the other things will come in time. I am on my way to work and will check on you later. Tina and Josh I am saying some special prayers for you so that you can get the answers you need on the journey home. Love,Grandpa!!!!!!!!!!!!!!!!!!

Liz, Rusty & Par Rich on March 31st, 2008 at 9:52 pm #

Happy CDH Awareness Day!!!!

Julie Kirk -Saudi Arabia on March 31st, 2008 at 10:50 pm #

the trilogy at the top made me laugh. It looks like Ella is listening, then hearing a joke, then GOT it…She is so so SO cute.
Ella is at part of each day in our home so I can say,”We have come a long way”. Thank You Jesus

Steve and Joan Odell on April 1st, 2008 at 5:56 am #

prayers are with you and for you as you approach this decision. Listen for the Lord – He’ll lead you. She is soooo sweet and such a good little one. Hugs – Steve and Joan

Carol Ellis on April 1st, 2008 at 6:42 am #

I don’t think the color pink compliments anyone better than Ella. I continue to pray for her and your family and hold you in my heart.

Eusey Family on April 1st, 2008 at 6:43 am #

Ella, you are looking so good! What amazing progress. Happy CDH Day to you and all the little angels around the world that have made this day a reality. You are truly a miracle.
Tina and Josh, may the Lord give you the guidance needed in the next few days to make the best decision for your family. We are praying for clearity for you all.

Rick, Shannon, Megan, Richard, Claire and Ryan.

Anne on April 1st, 2008 at 7:54 am #

You have to admit – exercising her independence just shows you how far Ella has come in this journey! And knowing how to calm her meltdowns without a trip to the ER also shows how capable her parents have become… all good things! God bless you in your decision making… you’ve certainly done great so far! — Anne

The Whole Correia Family!!! on April 1st, 2008 at 11:24 am #

How exciting…coming back to Colorado!!! We just can’t wait to meet Ella and allow her to get to know us so we can be her official Colorado babysitters!! I’ll be praying for God’s perfect timing on your return. He has been so faithful to you guys I’m sure all these details will work out as well. Can’t wait to see you guys.
Lisa and gang!!!

Matt, Abby, Austin & Caed on April 1st, 2008 at 12:41 pm #

1st ever CDH Awareness Day huh…that’s really cool. And a big step in a good direction. It’s amazing to me to look back at what was going on in NICU 2 when we got to meet you three and what is going on now. God is awesome! I LOVE IT! To go from “touch-and-go” situations in NICU 2 & 3 to Ella getting aggravated with her physical therapy (even though I know it’s hard to watch her get frustrated)…God has brought her so far.

If you have faith as small as a mustard seed, you can say to this mountain, “Move from here to there” and it will move. Nothing will be impossible for you.
Matthew 17:20

Post a comment

Name:  (required)
Email:  (required)