Update: Shane continues with the AloeCure and seems to be doing well with it...when I can remember to give it. The neurologist is having us back down the Baclofen and starting a new med. He seems to be doing well with it so far. He isn't biting his hand like he was and seems more flexible during daily exercises. The other day at grandma's house he said "kitty". I thought maybe I was hallucinating the first time... but Glenda stopped mid-sentence and said "Did he just say kitty?" He then said it two more times! Yeah Shane!
First day of PT and ST at Tulsa Sunshine Center done. He did great. In speech, the therapist was getting him to hit a button to make these little cars go around a track. When it would stop, she would say "go" and have him hit the button. It took one time and he had it figured out. He got so excited he would holler "GO!" and hit the button as hard as he could. Then he would laugh like he did something super cool. Little show off!
We started a new product on Shane as of last Friday. It is called AloeCure (from aloe vera juice). Since he started it he has only spit up 2 times ( usually its 3-4 times a day).
Today, we spoke with Dr. Steenblock from California. He has a stem cell therapy center there. The more we have looked into it, the more it seems positive in helping Shane gain more mobility and function. The procedure is not FDA approved (an therefore not covered by insurance), but has had so many positive results. We are going to go sometime before the end of the year. We will have to stay a week while he get injections for 5 days. When we get home he will have to be isolated away from infection/comtaminates/
On a side note... Today I set him in the floor while I was getting Sahara ready to go to grandma's. I told Shane that we were going in a few minutes. Next thing I know he has crawled from the middle of the living room to the entry way. I guess he was ready to go!
Shane's results came back from OKC. He definately has reflux (duh!). Doctor says it is bad enough that medication is not going to help (duh!) So we will be refered to a pediatric surgeon for a fundo and possible g-tube. Not that I am happy about it but at this point Shane and I both need some relief.
Regular follow up with Dr. Paul today. Shane is doing good. No results from the test done in OKC. He weighed in a 22 pounds!
Shane just walked with his push walker the lenght of the kitchen with minimal help. And he kept his hands on the walker. I am so proud. Last fall I had to hold his hands on the walker while trying to manipulate each leg to move in it's turn (yes it was exhausting and usually left my back killing me.) I still had to bend over to keep him upright and occasionally move a stuck leg for him... but he did most of it on his own! I am so excited about a new year and new therapy!
oing to OKC in the am for the scope to be placed. He has to have it for 24 hours. On another note... Shane refused to eat his dinner (pureed as usual) last night. He wound up eating up MY chicken leg (the whole thing!) Then he ate MY noodles and alfredo sauce (not cut up!) for lunch. I guess he is just getting to big for that baby stuff! Go Shaner Go!
Update on Shane... Went to the GI doctor yesterday. Next week we are going to have ph test done. The best I can understand, they are going to drop a scope down his nose into his esophagus for 24 hours. It will measure ph level and contractions of the esophagus. It wil tell how much he is really refluxing. The doctor wanted to do this first but was pretty sure we would wind up doing the fundo with g-tube in the near future. Soooo... we are just waiting for the apt next week.