Great news: No pneumonia! Hannah’s chest xray came back clear, so pneumonia has been taken off the table. We are still waiting on the cultures from her trach aspirate. Hoping it is not another nasty bug like the pseudomonas or MSSA, but she is already on the Cipro, so if it is, we will already start knocking that out. Hope to hear about that tomorrow.
Bad news: Because of Hannah’s weakness on her left hand and arm, she has been using it upside down when she crawls and plays. Her nurses and I constantly are trying to “fix” her hand during play, but she always reverts it back to the upside down (and seemingly painful to us but not her) position.
Crawling like this for the past few months has taken its toll, it seems, on her upper body. We started noticing her yesterday doing face plants when she is trying to get into a crawling position. Today, she did it many, many times. It is usually when she is tired (which is most of her day), and it is so sad to see because she gets so upset because it probably scares her and hurts a bit.
So I set up a consultation with the only pediatric orthopedist in Vegas for 11/11. Even though her OT was trying to avoid a hand brace (trying redirection and tape), I really believe Hannah needs to have that hand braced so she can get it back working the way it is supposed to be. She still can use the hand to hold toys and play, but I think she has stretched out that muscle (that is not meant to be stretched out) so much that it finally has “gone too far.”
Birthday news: Today is my birthday. I am spending the morning getting Hannah’s Cerezyme infusion, and you know what? That is a-okay with me! Want to see my birthday wish? (And thanks to Julie, Heather, Libby and family, and Chuck for the perfect gifts so far!)
Happy birthday!!! Loved the great new’s. The hand issues should be an easy fix with a brace.
Poor Hannah. You sure have a tough little lady on your hands. I hope that you figure out a way to help her with her left arm & hand. Wishing you all the best in your fight with this disease.