Thursday, December 10, 2009


I guess some people have wondered what exactly happened to Grace and what is going on now. I try very hard to mention only the good news on here for the most part. See, I created this blog not ONLY to keep people up to date about Grace, but also to bring glory to God for all that He has done. So, while I touch on the "bad" stuff, I will not make it the majority of any post. So, in this one post I'd like to answer a few questions and then move on!! :) I like to keep it happy!

1. Did Grace have H1N1?
--We are not sure. When Grace was taken to the hospital by ambulance on 11/14, they tested for both flu strains. Both came back negative. A week later, we were told that her H1N1 had come back positive. They ran another test in the PICU, and it was negative. Shunt failure GENERALLY does not cause kids to quit breathing, so it does make sense in that regard.

2. Did Grace have a stroke?
--Yes. Grace had a MASSIVE stroke that effected every part of her brain, but effected the left side the worst. We have had CT scans and MRI's to come to this conclusion. She will have PERMANENT medical problems from this, but thankfully she has a young brain. Brains do NOT heal, but they do relearn and learn to make up for the damaged part.

3. Can Grace walk?
--No. She does try to stand up, but her muscles are still extremely weak. In order to take steps, she has to have one person holding her hips and the other holding her hands. She gets tired very easily, but she is VERY determined. I am sure she will walk again.just probably not for a while. Even when she does, she will still probably need a wheelchair as a backup.

4. Is Grace blind?
--Praise the Lord, no shes not!!! We have every reason to believe that she was blind or almost blind until last Friday. Her nerves in her eyes LOOKED fine, but she showed no response to any visual stimulation, except for bright lights directly in her eyes. It seemed her eyesight came back to her all at once. One minute she didn't know who it was when someone walked in the room without speaking, the next she was saying "Hi Mommy" or "Gamma"!

5. Is Grace mentally retarded?
--Short answer? NO. She has gotten back her memory and most of her speech, though she does need to be prompted and reminded many times. For example, when I sing the B-I-B-L-E, I have to say "what's it spell?" and THEN she'll say "BIBLE".
--Long answer? We have NO idea what the long term impact of this stroke might be! Her memory definitely might be worse than normal. Behavior might become a problem. At this point, she is very needy. She has a hard time when anyone leaves the room, and especially if she thinks you're upset with her.

6. How am I doing?
--That's a loaded question that COULD take until next year to answer. Sometimes, I'm sad. Sometimes angry. Sometimes hurt. Tired most of the time. It's hard to watch your child in pain. It's hard to see her not wanting to do the PT anymore, but having to be the meanie that tells her she has to. It's hard to hear her cry about her room, wanting her favorite food, to go to Sunday School. Watching your child move her arm and leg up and down repetitiously because she CANT stop it? It is miserable. Seeing the look in her eyes when she knows she SHOULD know someone's name/face, etc...but she doesn't? It is heartbreaking. For every one of those thing though, Ive been blessed one hundred fold. I am truly FINE. I'm more than fine. When it seems like I just can't take it anymore, I can RUN to Jesus. Jesus makes every trial in this life easier. He also makes you look outside yourself and see other people and the problems that they are going through.

Ok... back to regularly scheduled programming!!

Gracie had a good day. She was tired out from all of the therapy and took 2 naps. She is now eating the mechanical soft diet for all meals. She filled up on breakfast, lunch and cereal she wasn't too hungry for dinner. Of course, I worried...then I remembered...SHE IS 3!! She has gone potty on the potty three times today. I still have to ask her most of the time, but like I said her muscles are VERY weak. It's good that she even has the desire. Her speech is getting better by the day. You know that saying "a child should be seen and not heard"? Well, that is Grace right now. Her voice is very quite because she doesn't have the breath yet to put any oomph behind it. Jess is working with her on that, with fun exercises, like blowing bubbles. She has started to initiate conversation a little more, but still mostly only talks when you ask her a question or have already started a conversation with her. More tomorrow!!


Heidi said...

Beautiful post, Michelle. Very well the "back to regularly scheduled programming" hehe.
Continuously praying for all of you. :)


amy said...

Hi Michelle. You don't really know me, I'm from BBC. I have been following Grace's story, and every time I read a post on the forum or a blog entry here I cry. My prayers are with you and your family!
If you think she would enjoy it, I would like to send Grace a card. I don't want to confuse her since she doesn't know me, but if you think she would like it please let me know the address!

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