We found out today that Scarlett does not have Myotonic Muscular Dystrophy. It was a relief to hear
that, but then that also means we still don't know what is wrong with her.
I realized I probably have never explained what is wrong with Scarlett, although to me she seems so perfect.
First thing is when she was born, her leg broke as they were pulling her out of me during the c-section. That has almost healed and I am so thankful. That really hurt her.
She has a floppy airway. Her lungs and all her other organs work just fine, but she needs a tube down her throat to keep her airway open. With time that may strengthen, but if it doesn't, she will need to have a tracheotomy.
She has poor muscle tone, which means she hardly moves her muscles. Just in the past couple of week, though, she has started to move her lower arms and hands and in the last week she has started to move her head. That is such a big step and we hope to continue to see improvement.
She also appears to not be able to suck and swallow, but with the tube down her throat, it is hard to tell for sure.
She has arthrogryposis, which is a tightness in her limbs. We are working with an occupational therapist to stretch out her tendons. This is something we will most likely have to do her whole life.
And lastly, she has seizures, but she is on phenobarb to stop them.
It's one of the most difficult things to see my baby struggling. I wish I could just take this all away from her. I can't imagine how it is to struggle breathing with a collapsed lung, or how uncomfortable it is to have a tube constantly down my throat and it makes me tear up every time I think of her little broken leg. I pray all the time that Heavenly Father will help her be comfortable. It is always such a blessing to see her peacefully sleeping.
Scarlett is being tested now for Spinal Muscular Atrophy. I've done some research online and came across this family in Utah who's two children have it. We should find out those test results in 3 weeks.
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The kids got to see Scarlett again yesterday. I'm so thankful they were able to see her. It's so much better to see her in real person and feel her sweet spirit.
Hunter lifted Jaina up so she could see her. What a nice big brother!
I was talking to one of the nurses today while Scarlett was soundly sleeping. Supposively they tried to put her on her tummy today and she started crying. They even saw her first tears. I felt bad for my little girl. I'm grateful she is able to cry and we realize she is crying (since you can't hear it with the tube blocking her vocal chords) when she is uncomfortable. They moved her back onto her back and she fell right to sleep. It was nice to just watch her soundly sleeping. Anyway, the nurse was telling me of a conference talk that she said reminded her of Scarlett and us. It was from last conference and for some reason, I don't remember hearing it. Elder Rasband spoke exacly how I feel at this time. I was so grateful to read that and so grateful that we have Scarlett.
