March 30
Today was a significant step back. Shelby slept on and off last night. Over the past couple days her right side has gotten much tighter and it has affected how well she can use that hand and arm. She can't sign or point to letters as well with that side because of this. They sent her for a head CT tonight to make sure there is nothing out of the ordinary and it came back negative for anything abnormal. This raises more questions than it gives answers. Her therapies today were okay. PT was spent stretching out and working her arms and legs because she has gotten so tight in her upper body. OT today did a lot of things she had already graduated from because she can't move her right side as well. She still doesn't relax her head and neck. She still can't get comfortable. She still sweats profusely any time she is in bed. She still falls asleep during speech therapy. The hospital still has no idea how they screwed things up so royally. Needless to say my frustrations have not gotten better since yesterday. Pray. I know most of you have been and I know you will continue. Pray hard. She has so many things that she has to overcome and the list seems to get bigger every day. I figure with the muscular dystrophy, defective heart valve, and the brain damage she may get a break some time. That's what I'm praying for.
Shelby & Matt,
2 steps forward and 1 step back - I just continue to pray that Shelby gets that break and for everyone there that is involved with her care to be able to find ways to help get her well. I love you both.
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Of course we keep praying for both of you. Your frustrations are totally expected and normal. You are both handling this so much better than most people would, try not to be so hard yourselves and remember we love you.
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Hey friends,
It's hard to hear about these recent bumps in the road, and I'm sure it's maddening for you... but there were bound to be some bumps. The path back is never without them. Hopefully they'll get this sorted soon. Sending good thoughts and lots of love your way.
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Dear Shelby, I just heard a saying by Mary Tyler Moore (you may not know who she is but she is an actress of mine and your parents era)and I thought of you and Matt. Here goes-- If only wonderful things happen to you in your life then you never know how brave you are. Well, you two are the most brave young people I've ever known. You guys are an awesome team, and we are all praying for you both, to have the strength and patience to get through each day.
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