Celia Bedila

Our sweet amazing, complex Celia...

Where do I begin?

The good news is always a great place to start:

~She is saying about 25 words now: Eat, more, bite, water, up, please, cookies, all done, I did, Aria, Nite-nite, bathtub, bubbles, are just a few...  "DADDY" is her favorite person/word ever. :)
And I acquired a new moniker: MAH- NAH.
It's growing on me.

~She is a whopping 20 lbs. Given that just 6 months ago she was 16 pounds with clothes on, we are pretty thrilled.

~She has distinct preferences. She will only take food from her daddy or mommy. She used to let anyone hold her, but now? notsomuch. I love to see her attaching to us more and more.

~A really exciting advancement for Miss Celia is that she got her bath chair (think lawn chair with straps) and her wheelchair will be ready in June. Her gait trainer is going to be "all work all the time", and we were concerned that she would become frustrated with her new-found independence with her "go-go." I have been praying about it, because our insurance will not pay for another gait trainer for 3 years and that lovely yellow go-go costs $2200. I am thrilled to say that I found one on ebay (of all places) and she will have 2 gait trainers- one for fun and one for play! God provides, always.

~She has a temper. Now,who would think of that as good news? It shows her cognitive ability (which we know is fully there) but seeing her get madder than a hornet because I asked her sister to feed her a snack, and she only wants MAH-NAH to feed her, warms my heart.

The not-so good news:

~She had some lab work that came back not so great a few months back. We re-tested, and although we don't have all the results yet, one test was actually worse than before. It could lead us to the big, bad, ugly diseases that mimic cerebral palsy.

Since I personally cannot go there, I prefer not to.
Yes, my head is in the sand for now.

Prayers would greatly be appreciated.

I never thought I would hope for CP as her diagnosis, but the ones we are trying to rule out are THAT BAD. And unfortunately, we have not been able to rule any of them out yet. In fact, the first round of tests have led to more specific testing, so we are really hoping for the "everything looks great" phone call.

And we really can't end on bad news can we?
There. 
I feel better now.

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