On a not so good news update

The poor boy has the poops so bad again that it has "burnt" the skin off his tushie and his cheeks are bleeding again. He cries so hard when I change him it is sad. He is pooping at least once a hour and just keeps it from healing. I hope he stops pooping soon. Well not all the way we don't want to go thru what we went thru this summer with him not pooping at all.

P/T

Andrew is doing SO well in P/T we are now going to once a month for November, December and January. In January will be his last time. He has met his P/T goals. As for his leg braces we are going to change them out for new ones. The ones he has now are for low tone and pronation. His low tone is better so he doesn't need them so high up. We will be getting some that go to his ankle for the pronation. This is good news!!!!

Research

I found a doctor in Georgia who is doing research on this gene and others. He is looking at all of Andrew's tests and the next time Andrew gets blood drawn we are going to send him some to do work on. He is studying different variations on the gene. In the process of getting all the information together for him we found out that not all of the testing was completed. The gene specific test was to be done in two tiers. If the first tier was negative (which it was) then the second more in-depth test was to be done. Well, it wasn't. So the genetic councilor was going to call the lab and find out why it wasn't done and have it started. So we are still "technically" not out of the woods  on the gene conformation yet. 

Wonderful news!!

 I have some wonderful news!!! Andrew broke 20 pounds. Not only did he break the 20 pound mark he surpassed it. At his GI app. last week he weighted in at 20 lbs and 10 oz. We were absolutely thrilled to see that. He has been fighting to get this weight on since May. He was almost 20 lbs in May and then he got sick and spent a few days in the hospital. He went down to 18.5. It has taken 4 months to put this weight back on. So we don't have to go back to see the GI until his 2nd birthday. That makes me SO happy. 

With his diagnosis I do need to take him back to the dentist, audiologist and eye doctor just to get everything rechecked.