ACTHar Begins

Yesterday Brandon got his new insulin pump! We had to go to a really long class, but so far his blood sugar has been awesome and he feels better. After that we had to do Paisley's barium swallow study. It was creepy. Basically a speech pathologist fed her barium in a thin liquid from a bottle, then a thick liquid, and then some baby food while they watched her eat on a video X-ray. She has penetration in her airway, but she clears it and is not aspirating. She also has delayed swallowing. They said it's nothing to worry about now with her thin food, as long as we keep her elevated while feeding.

This morning we had to go to Children's ER to give Paisley her first ACTHar shot. She had to be in a controlled setting incase of a reaction and a home health nurse had to show us how to do the injections (even though Charlie could do it with her eyes closed). She tolerated it fine and barely cried. So two more weeks of two shots everyday, then we start tapering down to finish the four week treatment. I can't wait for this to be over, and even more, I can't wait for this to start working (even if it's just while she's doing the therapy). I need my baby to progress in development to have a longer, more healthy life.