Thursday, April 3, 2014

Playing catch up...

Oh boy so much has happened since I last blogged. It has now been 4 months since we moved again, and we are now living in sunny Fort Launderdale. At first I have to say it had been a serious adjustment good and bad, but now after four months I think we are all pretty happy here. Payton and Emma are now in the same school which has been so nice since before I felt like I was constantly driving all over the place. Emma started school in September and has seriously been the best thing ever for her. I was so scared to put her in school and here in Florida preschool is full time, but surprisingly she loves it so much that she gets sad when there is a school break.
Payton has had a little rough transition to the new school which was to be expected because last year it was rough on him too. However he has bounced back much quicker, right before spring break he received super student of the month and Kid of Character for "Honesty", Which is amazing for only being there a couple months. 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.
 So he ordered a sedated MRI to have her back checked. So when we went to Shriners and I explained to them everything this doctor had told me they completely disagreed with the surgeries and said that for a child this young that has so much growing left to do that it wouldn’t be wise to have these surgeries because the problem will come back with in a couple of years, and not only that but where her leg is tight is mostly around her knee they said that she is developing a knee contracture and this surgery would most likely not even release her leg and she would still be tight.
 Now of course I was very shocked to have two doctors say such vastly different things ( of course this wouldn’t be the first time nor the last). So of course my next question is ok so how do we help her what do we need to do. The answer was bracing and getting her up and walking and standing as much as possible. So Nick and I decided that from here on we will stick with Shriners for her orthopedic stuff, because they deal with kids with Spina Bifida all the time and this doctor does not and we feel if anyone is going to have more of an understanding its them, but we also decided to get a third opinion just to be safe and it will be from a Physiatrist who is not a surgeon and hopefully will be able to weigh in on the situation. 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.
 I noticed she isnt as strong as she was in February showed PT videos she agreed. So went back to neuro in October and again in November. I insisted she needed a sedated MRI because I feel like she could have a tethered cord that is it was has to be what’s going on well he refused and said no lets to a regular MRI first to see if its the shunt. Ok so we did MRI nothing he says everything is the same, so with her prior history with her last shunt malfunction her ventricles did not change much, so the neuro surgeon says well we might need to preform exploratory surgery because it could be her shunt.
I of course asked what about her back shouldn't we make sure her back isn’t tethered cord first (which is scare tissue developed around her back closure that she had when she was born). He says No there is no way she could have a tethered cord this early it’s got to be her shunt. Well the neuro she saw back at Shriners is now gone retired and now it's December she wasnt really complaining as much and we found out we were moving again. So fast forward to now she saw neuro surgeon here explained everything, she had been doing good as far as symptoms go but would occasionally complain so neuro said we will wait and see wanted her to start therapy again to see if that would help since she is growing to help stretch things out. 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.

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