Just wanted everyone to know we are still here. Matthew has good days and not so good days. He received his first botox injections today. The procedure was quick. The ENT said that it would start kicking in in the next few days. Hopefully we will see this help him. We will hopefully be able to decrease or even eliminate the Robinol medication. We will restart feedings in the next week to see if he will tolerate some feedings in his gut. If he does, we will start weaning him off TPN. I think this will be a slow steady process.
Sorry I haven't had any updates. But there isn't anything to update about. Just normal day in, day out stuff. Rinse, wipe, repeat.