An update on Celia-Boo.

 We have met with her cardiologist and neurologist and the consensus is that her heart rate/oxygen issues are from our old nemesis, Dysautonomia.
Basically, it is her autonomic nervous system malfunctioning.
And, it is a progression of her disease.
Sigh.

 We are almost ready for nursing to begin.
We decided on daytime nursing.
The nurse can not only stay on top of hydration, medications, gtube feeds, breathing issues, physical and occupational therapies, but also can stay at home with her while I take the other 3 to do fun things that Celia can't do. I never want the other three to feel lost in the medical stuff. 
It's important that they have fun, care-free time with me.
And it frees me up to simply be her mom.

I'd be lying if I didn't say I was a bit nervous.

Her "Make a Wish" gift planning is coming along nicely.
She will get a 10 by 16 play house with a swing set for 4 attached off the side.
It will have a deck on 3 sides, and 6 windows that open as well as air-conditioning.
It will have wheelchair access, and inside will have lots of girly things for her to do with her feet.
We are SO EXCITED for all the memories the girls will all have together there.

And lastly, although her body is misbehaving, she has found her voice.
Her new favorite thing to say is, 
"NO WAY!"
Clear. As. A. Bell.
It is about the cutest thing EVER, 
so I ask her 1,200 times a day if she is tired, 
or wants to go to bed, 
or needs a nap.
Just to hear her say,
"NO WAY!"
It's THAT cute, I promise.
And if I can figure out how to get a video on my blog, I'll show you.





Comments

  1. NavhelowifeJanuary 26, 2013 at 12:58 PM

    Love the "No Way!"
    Need to come and see those girls and soon!!!

    ReplyDelete
  2. Lee AnnJanuary 27, 2013 at 6:19 PM

    I just love her sweet face. She is so beautiful- always full of smiles. Always praying for your precious family.

    ReplyDelete
  3. Grandma and GrandpaJanuary 27, 2013 at 8:54 PM

    Celia's "No Way" is such a statement of her wonderful, fun loving personality, She is so in tune to ALL that is going on around her. She is bright beyond her years and one of the MOST charming and engaging 4 yr. old I have ever known. That is not a boast from a very proud gran'ma but a statement of fact from a woman who recognizes brilliance and profound intelligence when she sees it She is truly one of God's chosen children, sent to show us mere mortals His amazing handiwork.

    ReplyDelete
  4. likeschocolateJanuary 28, 2013 at 12:28 AM

    Love that she found her voice!

    ReplyDelete
  5. Meghann RobertsFebruary 8, 2013 at 11:48 AM

    We just love you guys and how you live your life! What a little gift C is and I love all the updates and pictures. What J.O.Y. she has and brings to all who get to know her! I remember the first picture you showed me of her and S and WOW! You can so tell they are greatly loved!! We pray for little Celia every single night. She holds a very special place in our girls' hearts!

    ReplyDelete
  6. Meghann RobertsFebruary 8, 2013 at 11:48 AM

    We just love you guys and how you live your life! What a little gift C is and I love all the updates and pictures. What J.O.Y. she has and brings to all who get to know her! I remember the first picture you showed me of her and S and WOW! You can so tell they are greatly loved!! We pray for little Celia every single night. She holds a very special place in our girls' hearts!

    ReplyDelete

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