Yesterday, Noah had 3 different appointments at Childrens. Our first stop was with Rehab. The checked his joints and muscle tone. They asked how he was doing with his therapies and what we were working on. I had them look at his right foot because he has had horrible foot drop ever since after his surgery. We have been having almost no luck getting his foot back to neutral position. The splint we have been using doesn't seem to help all that much. The looked at his foot and checked his range of motion. Their solution is to do Botox injections into the muscles to help relax them. Then they will do serial casting. So in May, he will get his first Botox injection and serial cast and we will have to come back once a week to have his foot re-cast for up to 4 to 6 weeks. We also finally have a weening schedule for his Diazapam.
Our next appointment was with Special needs. We went over meds and such. We made sure we had all our follow up appointments. I really LOVE that Noah is part of this program. It is great to have others advocate with and for us. It gives us a breath of fresh air to know we don't have to go at this alone. They also ordered a chest x-ray to make sure that his congestion was not in his lungs. According to the x-ray, his lungs are actually better than his previous one! Praise the Lord!
Our Last appointment was with GI. This appointment was made because of the 2 pound loss last week. Although he has not vomited in a week, his weight gain didn't show the greatest improvement. Noah has a home care nurse visit tomorrow and we will see if our adjustment in his feeding plan has been the trick. We also we told that some patients with MIC-Key buttons will be getting a new button design that will help with g-tube leakage and is more low profile. He should be getting his new button next month.
Thank you for your continued prayers. Please pray that Noah gains weight and we can stay away from another admission.