11-13-14 Dabrowski apt

Avery's foot/ankle is still not where the doc would like it so we will have to do more botox injections and another casting. Yes she just got the casts off but we didn't get the stretch we needed to get to have her foot/ankle bend the way it should when walking. The problem...insurance will only approve these injections after a certain amount of time and we won't be eligible until Dec 20...which we all decided we would wait til after the holidays. At this time we didn't know that our Dr. would be having knee surgery and would be off of work for several weeks. Here we are now ..end of Feb and he is still not back. Avery's braces have had several adjustments but still are causing her pain because of the growth of her foot. The brace is basically molded to the exact shape of her foot at that time and last about 6 months(or until she grows) So she was having really horrible discomfort with them. Her teacher was having to remove them in the afternoon and give Avery a break from the pain:( We are finally at a point that she goes the school day without pain. Phew, for now! The Dr. also ordered hip and back x-rays as regular maintenance. We got x-rays within the next couple of days and I got a peek at the new ones and my jaw dropped. It is one of those times that you will never forget. I could see the curve in her spine. I've always been so worried because I have severe scoliosis and scoliosis is common in Pompe patients mostly from the muscle weakness. About a year and a half ago her curve was only 5 degrees...and I knew what I was looking at was not 5 degrees. We would get the results at our next appt. with doc or I could email him for results. I emailed dr(and he responded but needed more info etc so I sent what he needed and he didn't get back with me, which is odd for him and I lost track and here we are late Feb) I just talked to his office and got the info..her curve is up to 18 degrees..NOT GOOD! OMG freaking out here! She said they usually don't do much til it is at 20 degrees. But from 2013 to late 2014 it changed from 5 to 18 degrees.

ready to get x-rays! such a champ.