on a roller coaster, blindfolded

I feel as if I'm blindfolded and riding a roller coaster. Just when I think she is improving someone with the education to know what to look for says there is a concern. Sparrow’s neurologist amazes me. He see's things so quickly, and notices things that I don't! I'm with her 24/7!!!! Her eye still tends to go to the left?? Let me see? My stars, it does! Once again I went in expecting to hear how I'm a worry wart first time mom. You see she had stopped tracking with her eyes (something a month old baby can do). She had stopped saying the words she could say at 6 months old. Most curiously she started sticking her tongue out to the left. I had all sorts of perfectly normal reasons why a child would do these things. Eyes - she's a torti baby, she just has to readjust to using her eyes now that her neck is straight, no problem PT is working with us on this. Speech, well of course she is working on other skills and doesn't need to practice those words she knows them already, normal! Tongue, well she is getting a new tooth so that is probably bothering her.
Even better, before her appt she started beginning to track again, she said "Jack" and "Mama" again. and sometimes she puts her tongue straight. Cool - it was a glitch now it's gone we are going forward....
   But no he had to shock me and say sometimes when skills come and go it means there is something going on with the brain. Lets get an EEG. (I can hear a record being scratched like a movie sound effect- rewind, back up, what???)    But I said she is better!
   Am I dreaming? Wake up Me, wake up! I guess I really am awake.
Today is PT and her fitting for her leg braces. Husband and my cousin had a wrong pic of this in their head, think plastic velcro closure shoe-like things. Not Forrest Gump. Still, in my head it's a foreign object that I don't want her to need.
   I trust God and I know that if these things help her in any way then I can be a good Mom and handle the fear and stress. But I don't have to like it. What do folks do who don't have God? I can't imagine trying to survive this without Him who is my comfort.

Swallow study number 2

Today it was feeding therapy ***M, she ate a Pringles stick for lunch!!***. Tomorrow is her second swallow study. We are hoping to find out that she is cleared to swallow thin liquids without choking (and that it's just our imagination that she is choking on the thick stuff). I am glad for the pediasure that I was originally hesitant to give her. It's keeping her alive and keeping the weight on.
Wednesday we go for a recheck to the Neurologist to make sure her tone isn't worsening and to find out why we are having some glitches. She is no longer tracking objects with her eyes and her tongue is deviating to the left when she sticks it out - which is often.
Thursday we have PT and she is getting fitted for her leg braces. I am told that they have cute colors/patterns to pick from. I haven't been able to make this OK in my head yet. Of all the things that have been difficult you wouldn't think this one would be that bad. But I flat out don't want her to need them, and I hate knowing that she does.

Prayer

   Husband and I have been praying so hard lately. We have to rely on God for everything, He's graciously taken everything else away. We don't know why He moving the way that He is but we do know that we can trust Him. We both feel like He has put certain desires in our hearts but we know that He has to provide an incredible amount of miracles to make this thing happen. It seems so impossible and yet the way things keep happening it all seems like He is directing us to do the very thing we desire, yet it's impossible.
   We know that God answers prayer. Last night we were talking about how He knows our need bafore we request it. We cannot change God's mind or make Him see our side better. Prayer is to change us.

Salmonella

Well it wasn't a virus it was salmonella! That is all behind us now. Sparrow is doing really well. Praise God!
She is crawling all over the place and cruising along the furniture. not much news, and that is good.

Sparrow in the Hospital

This is just a quick note to say that Sparrow is being challenged with a nasty stomach virus. she is here to ward off further dehydration. More about this later...