Posted (Tina) in All Posts on November-18-2008

Wow, look at those eyes!

Ella still retched throughout the day, a little less than yesterday, but still too often. Her mood seemed great throughout the day, but she did have 2 major meltdowns. Kelly shared that it has been a long time since that happened. When I write “major meltdowns”, I mean that Ella got so upset that she could not catch her breath and turned blue/purple. Those scary meltdowns where you are pleading with her to breathe and not pass out.

Part of it might be that she has been on less oxygen. If she starts to get just a little worked up and cannot catch her breath, she freaks out and goes over the top. She just downspirals. You can’t blame her. It is pretty scary to feel like you cannot get enough air. The only thing I can relate it to is when I thought I was going to drown once. Just that feeling…and at her age, not understanding.

Just on Sunday night, we switched her down to 750ccs of oxygen, down from 1 liter. And last night, I was able to turn her down to 625ccs when she was fast asleep. We think she is ready to be weaned on the oxygen, but I have noticed that she can be a bit touchy when we make that type of change (hey, it’s Ella, she doesn’t like any change).

I got a call from a new OT. She was going to try and come tomorrow, but that may not work out. If not, then she will visit for the first time next week. We’re hoping and praying for a good fit. We have not really found a good match from an OT perspective since we returned to Denver…and Ella is starting from scratch on the oral/feeding skills. Pray that this is a match!

Ella seemed in a good mood as she went through her PT session this afternoon. You can tell that she is getting stronger. I’m so glad that we have a great PT that cares about Ella and that Ella has gotten past her stranger anxiety so that the therapist can be more hands-on.

Her pulmonologist would like her to get labs early next week on Monday. It is always a challenge with our work schedules, but somehow we will get her to the blood lab. Our motivation is finding out where her levels are to see if we have gotten any closer to the perfect cocktail for the Bun.

Matthew 10:31 (NLT)
So don’t be afraid; you are more valuable to God than a whole flock of sparrows.

I gave Ella a bath tonight before putting her to sleep. I thought about how deep my love is for her. Then, I remembered this devotional and the verse above: “How much are sparrows worth? Not very much, but God knows when each one falls. How much are you worth? You have inestimable value in God’s eyes. When you feel hopeless, remember God knows you and deeply cares for you.”

As I lay down for sleep, I rest in that truth. I think about the inestimable value I feel for Ella and realize that can only be a fraction or small portion of how God feels about each of us.

Julie Kirk on November 19th, 2008 at 12:45 am #

she is aying, “next birthday I will be two, then 5, oh wait, 4 is before 5. she is precious. always with me.

Moriah Weir (Daughter of Andrew and Lisa Weir) on November 19th, 2008 at 7:20 am #

I don’t know how often I have thought about that verse. It is so cool how much God loves us and cares about us.

Lord, we thank you for Ella and your love, kindness, and grace when it is hard to struggle on and other people wish that Ella could be weaned on oxygen. Amen!

The Weir Children

Debbie Bennett on November 19th, 2008 at 8:58 am #


LoriAnn on November 19th, 2008 at 11:52 am #

Been busy, but have been keeping up. My daughter is getting married Saturday, so their is a lot to do. I am making the cake and planning all. I am so happy for her. What a great guy, too, since she has six kids already! One of them is his, but hey, he loves the rest, too.
Anyway, I didn’t want you to think we fell off the face of the earth. Just been taking care of nine kids while my hubby works nights, and so does Jessica. Whew!
Glad to hear and see Ella.

Joel Snyder on November 19th, 2008 at 4:44 pm #

Ella, You are the cutest little girl. Please try to not hold your breath it scares your Grandpa. I am glad to see your progress with the PT. I am praying that the new OT will work out for you. Give your Dad and Kelly a big hug for me. I will catch you later. Love,Grandpa!!!!!!!!

Stacie Oliveri on November 19th, 2008 at 9:55 pm #

I have been following Ella’s blog through another CDHer. I know that my Cdh daughter would vomit and retch a lot. We changed her from a powder to a liquid (Carnation Good Start) and all of it stopped the instant we changed her…Just a thought…:) Prayers always…

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