Thursday, September 30, 2010

What we've been up to...

We've been pretty busy around here lately. Here are a few of the things Miss YouYou has been up to...

"Doing school" with her brothers...


Gymnastics one morning each week...


A visit to Ch*ck e Ch**se...



And several visits to the science museum...


A little bit of soccer...


We've discovered a few new things...like that she is allergic to penicillin


And that she loves ballet...


And she's pretty good at rollerskating...


And finally, that sipping Sprite through a "sour noodle"/AKA Sour Straw is lots of fun!



We will be going for a checkup with YouYou's cardiologist next Friday. Even though she is doing great (gaining weight, has lots of energy, etc.) I still get a little nervous about these visits. Aaron and I have been talking and praying about some specific things that we want to discuss with her doctor this visit. See, there are things we would like to just "pretend" aren't there because when you look at YouYou you would never know anything is wrong with her. Her condition though, is very complicated. There are two sides really...the side that says a child with L-TGA needs to have a very risky surgery called a double switch so that they will not need a heart transplant when they are older...and the other side, that says that the double switch surgery is too risky and has not been performed enough and is not even proven to increase lifespan so why perform it on a child that is doing well. When we first brought YouYou home, the double switch was not really an option because her lungs were in bad shape, so the immediate thing to do was to close the hole in her heart and try to let her lungs heal, etc. But now...should we be thinking about the double switch? It's hard to know? It's hard for me to even talk about this, much less write about it on the blog. I hope I will feel like sharing more once we have more information from our visit next week. Will you pray with us?

10 comments:

  1. I am praying for discernment and for wisdom and for a good report from the doctor. Seeing her jump around in gymnastics, you would never know she has such a serious heart condition. But I know her heart is full of love for her family! Such a sweetie!! Love her and love you.

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  2. Yes indeed. As the Lord brings you to mind, I will pray for your precious daughter. Knowing that she is the Heavenly Father's daughter, too, even before she was yours, is indeed a comforting thought. Thank you for the updated pictures. I can't believe how long her hair is! She is definitely growing up.
    Hugs!

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  3. Absolutely!
    YouYou is looking so big and healthy! I hope your appointment brings you a little bit of peace or at least gives you some answers to your questions!

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  4. Erica, she is So beautiful!! I will definitely be praying. For healing, guidance and peace! Let us know what you find out. I know how nervous and upset I was at Wesleigh's appointment recently and it's nothing like this!

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  5. I will be praying and praying. <3

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  6. Found this post from the No Hands But Ours site. I just wanted to let you know that my little 3 year old and I just sat down to pray for your little YouYou. He gave a beautiful prayer thanking God for your little girl's heart and that she has a mom and dad. You're daughter is beautiful, and God has her in His hands no matter what you decide about surgery.

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  7. Well HELLO stranger!!!!!
    Call me if you're coming through!
    Is it THIS Friday?
    Praying for you and Aaron--God will show you! Phil. 2:13
    Love you!

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  8. HI....
    From one heart Mama to another, I am praying for you. Praying for God's perfect wisdom as you look at all of the possibilities.
    Hugs,
    Shannon

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  9. Praying for you always my friend! :) I LOOOOVE that soccer photo of Miss YouYou. Katie is so sad she missed the cut off by 1 stinkin' day.

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  10. Hi!! I hope all went well! I can't believe how big our girls are!!

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