Clinic Day with Dr. Schroth and her team

Wednesday June 19 was clinic day! This year we were able to get her an appointment on a muscle clinic day so it involved all of Dr. Schroths team of doctors including an Orthopedic Surgeon, Physical Therapist (who we normally see), Occupational Therapist, Nurse Practitioner, Rehab Specialist, Orthotists, Dietitian (another one who we see each visit) and I'm sure a few more I just can't remember!  Clinic began around 8:30am and lasted until after 3pm so I know they were all tired at the end of the day!  I was able to "face time" in through Addy's Ipad and my Iphone so I was able to listen in and even chat with everyone!  Dr. Schroth was very pleased with Addy.  She thought she looked great, sounded great (lungs) and was overall pleased especially since it had been the summer of 2011 since the last time she saw her (we had to cancel both appointments last summer). We had a few concerns going into the appointment and were hoping to resolve all of them (diet-belly issues and we wanted a TLSO brace to support her spine while driving her power chair)!   She had x-rays taken of her back to see the condition of her spine and the orthopedic doctor said those looked great!  He felt that a hard TLSO brace (see picture below) was not needed when positioning her in her power chair but maybe a softer one only for support. If you remember last fall we took her to see an orthopedic doctor at UVA and she said no to the brace.   The worst part of the appointment was when they met with the PT (which we expected) because Addy hates to have her feet touched and we knew that gravity and SMA were winning when it came to her feet positioning and range of motion.  She has AFO's (shoe braces) to keep her feet in-line or in a neutral position but some days getting them on is a challenge in its self due to a very stubborn and strong willed 4 year old! The PT and Orthotist recommend a different  type AFO and said they would be more then willing to talk to our local orthotist once we were home.  The OT and Nurse Practitioner had a lot of great ideas to share with James (most we were familiar with) but they were also able to give us some information to share with Addy's local OT.  Our biggest concern with Addy was her diet so we knew one of the most important people we needed to talk to (other then Dr. Schroth) was Erin her dietitian however Erin was off that day so they met with another one.  We went over with her how nights were becoming an issues because Addy was waking up crying due to air being trapped in her belly and causing her to be uncomfortable.  She recommended switching Addy from apple juice to white grape juice and then taking away the applesauce and replacing it with either peaches or apricots.  She felt the apples were causing the gas and she wanted us to try another fruit to see if that would help.  Dr. Schorth changed a few settings on Addy's' bipap (breathing machine) only because she said she was getting older and didn't need some of the higher pressures she was currently receiving and upped all of her medicine doses (due to weight gain).  Overall the appointment was very successful and she said she would like to see Addy again in a year for another muscle clinic appointment!

Here is Nora when she was a baby wearing a TLSO brace just incase you didn't know what a TLSO brace is