Thursday, April 3, 2014
Playing catch up...
So last week was Spring break for the kids and we all survived. We drove up to Tampa on Tuesday stayed overnight since its a 4 hour drive and next morning went to Shriners for Orthopedic appointment and to get her casted for new AFO's and new HKAFO's like the ones she previously had. Now about a month ago Emma had appointment with the Orthopedic surgeon here in Fort Lauderdale and he seemed to think that Emma needs surgery. For those who don't know, Emma's left side has some pretty significant muscle imbalance's which causes her whole left leg to be very tight and causes her foot to turn in. His take was that she needs a hamstring on the back of the thigh (partial hamstring release). These muscles control the tension in the thigh and around the knee, allowing her to walk with a more normal posture. As well as needing a surgical procedure that would correct the bone in the back of her heel and pull it backwards and a muscle and Achilles heel release so her foot can stay in a nutural position. Now he was also concerned how weak she was and I explained everything we had been going through which I will explain all after this.
Now I would say since February of last year there have been subtle changes in Emma. We went to Spina Bifida clinic at Shriners in April 2013 and I thought maybe it was the shunt because she goes through these spells where she complains about her head and her gagging becomes so bad and she is moody. Neuro asked has she been a little weaker I said yes but she hasnt been doing therapy like she was back in Arizona so I think that had a huge roll. He seemed to think it was her back, I disagreed and we went and saw a new surgeon in St.Pete where we lived. Before going to new neuro Emma got a UTI second one she has ever gotten and she had full blown fever. Urologist said we need to make sure nothing is going on with the back so he refers her to new neuro. Now at first he didnt seem to think anything was wrong and MRI showed nothing and everything was all hunky doorey, well couple months later and September rolls around she starts to have issues again complaining of headaches started to get constipated.
So thank goodness we will finally have some insight on what could be going on I dont even know what to expect I know that it is very hard to tell if its tethered and the easiest way is go with the symptoms that go along with it. At this point I have my self-convinced that is what is going on I really do. So next week we will see what happened she will be seeing neuro right after to recalibrate her shunt and read the results. This time we will be one big happy family because Nick and Payton will be there. This time I will make sure to update next week as soon as we know.