Tuesday was Myelomeningocele Clinic day, which means that we see a whole lot of doctors while sitting in the same room for a few hours, and have several test to make sure that everything is alright. Needless to say I am always apprehensive when we go to these appointments. Though I know that her diagnosis won't change, there is always the chance that something in our lives could drastically change. We may one day find that she needs a catheter, shunt revision, could suffer from tethered cord, or seizures. There is so much that could happen, but I am going to focus on the good that is happening right now.
Our appointment yesterday went great. To date Elly has not had any shunt revision, he incision looks great, and has not suffered any developmental delays. Though she is not able to walk yet, the Doctors anf physical therapist are optimistic that she will in the near future. Yes, there's still the chance that she won't but I am choosing to look at this as a glass half full sort of situation.
Elly has SureStep SMO's (Supra Malleolar Orthosis) which helps to stabilize her ankles. She has had them for about three months now, and along with her wide shoes that I picked up from Payless they seem to give her the stability she needs. After meeting with the physical therapist at DMC Children's Hospital, we decided that several times throughout the day Elly will cruise throughout the house without them so that she can start to gain more balance. Which works out great for both of us since she takes them of and makes it hard for mommy to find them. They will probably have to be refitted in a few months, but seeing as the size of her feet have not really changed much, they are okay for now.
We love our clinic, heck we travel and extra hour and a half to get to our clinic, because over time you build relationships with the doctor's and nurse's that you see every couple of months. Now that Elly is older I know that we may only see them once or twice a year, but the extra traveling is worth it. One day we may have to use another clinic but we will definitely be staying there as long as possible.
Note: If you want to know more about Spina Bifida please visit www.spinabifidaassociation.org. To find other blogs like mine, get encouragement, find out global news about Spina Bifida, or find resources available visit facesofspinabifida.com .