Real signs of recovery

Hannah has been a much different baby in the past few days.

Maybe it is because she is finally off all the sedatives and only on her movement disorder and seizure meds (Keppra, Klonopin, and Haloperidol). Maybe it is because she is finally feeling better overall. Maybe it is because her movement disorder seems to be even lessening more to where we really only see slight-to-moderate movements in her hands and face instead of her whole body.

Who knows for sure, but I am just so glad to see it!

• She has gotten much of her personality back!
• She smiles all the time. She wants to grab for her toys like she used to (even if she can’t keep a grasp on them, but even that is getting better).
• She can balance while sitting on my lap with me just holding her waist instead of having to steady her whole body.
• She is starting to reach out and grab for things, even if it means scooting on her back and rolling to her side to get something.
• She has decided she does not want the trach anymore and has been trying a lot to pull it out (and succeeded once!) .
• With the help of a Boppy pillow, she can go on her knees again, for almost a minute now, and you can see she is thinking about crawling because she is trying to get her knees to move.
• Even though her fine motor skills are still very poor because of weakness and the movement disorder, it has not stopped her at all from playing with her favorite toys — piano, rolling wheel, and she even really got into her grandma’s iPad (the baby piano app that her friend, Bertrand, plays with).

Even her nurse who was here today, who had not seen her in a week, was excitedly surprised at how much progress she had made in a week.  When I was in my office working, I heard her yelling to me “Carrie, look!”   Hannah was on all fours, rocking back and forth, trying to crawl.  She was so excited because when she last saw Hannah, just a week ago, Hannah was barely doing anything.

She started occupational therapy last week, and next week we start our physical therapy (Mondays) and continue our occupational therapy (Tuesdays).

I just love seeing her come to life now.   I am finally seeing that sparkle in her eye, that smile that makes me just want to kiss her constantly, and even hearing her soft-sounding giggle sneaking past the trach.

She turns 2 on Sunday.   What a momentous birthday this will be.  Hitting that “2-year-old” mark for  a neuronopathic Gaucher baby is a huge, huge deal, as most of you who have been along this journey with me know.   Even though Dr. Goker-Alpan clearly said to us, “she is not a type 2 baby,” she still is on the type 2/3 spectrum.   Even though we may not be having a huge party this year to celebrate like we did last year, in my heart, I will be celebrating with a huge smile on my face and a beautiful baby girl cuddled in my arms.