Making Rounds

Macayla gets to see most of her doctors this week. She has been to neurology, the surgeon’s office, genetics, and nutrition. She has started baclofen for stiffness and rigidity. Dressing Macayla can be like dressing Pinocchio while some of his joints glued into a position. You may get the shoulder to rotate, but the elbow is frozen at a 60 degree angle. You may get the elbow to move, but the shoulder won’t relax. It’s different every time. This medication is supposed to help with that. I hope it helps her relax. She went to the surgeon’s office to have the valve on her feeding tube replaced, again. We had it replaced at the end of February because the first one started leaking slowly. The new valve began leaking almost immediately and worse than the first one. We finally got this second valve replaced Monday and today, it started leaking! All of this is happening in the midst of these valves being on constant backorder. I’ve had a few conversations with the manufacture, Bard and I am waiting on an answer as to what can be done. It defeats the purpose if all of the formula we put in her stomach comes right back out when we disconnect her feeding pump. Not too good! So, Mac makes her rounds this week. She’s a girl on the move.