Ophthomology and Physical Medicine Appointments

Wow am I a slacker!  I am WAY behind on my blog entries.  Cole visited the Ophthalmologist on May 13th and although we had to go during nap time, he did very well.  Dr. Jeffries is very happy with his progress and said there was no need to start patching yet.  YAY!  Also, she said all surgeries are off the table for the short term since his eyes are looking very good, relatively speaking.  She was disappointed he was unable to read the eye chart still so she sent us home with a copy of it so we can work with him prior to our next appointment.  Once he is able to identify the shapes it will be much easier to determine is actual visual acquity.  She did say his prescription changed slightly and recommended new glasses.  They have been ordered but haven't arrived yet.  The doctor wants to see Cole again in October.

We also went to see Dr. Sarah Evans, Director of Physical Medicine at Children's National Medical Center.  We made this appointment back in January by the request of Reagan's Neurologist.  We are considering electrical stimulation as an assistive technology for Reagan's high tone in her leg but the neurologist was concerned it could trigger seizures.  Luckily Dr. Evans said that was not a concern and she supports trying the technology if our insurance covers it.  Unfortunately I don't expect that they do and it's about $5,000.  She also recommended that we consider Botox injections for both Reagan's wrist and leg.  Although her physical therapist has concerns over it's ability to have positive long term affects, we've decided to try one round of injections to see if it helps.  The recommendation is to do the injections in July prior to going back to UVA for another intense Constraint Induced Therapy program.  Dr. Evans discouraged us from considering serial casting on her leg.  This is something we are considering that will help increase her range of motion.  Unfortunately she drops her toe which causes her to trip.  Her current brace helps limit that problem by preventing her from pointing her toe, but it also limits using her calf muscle and therefore will limit her ability to strengthen this muscle (and is causing her left leg to be smaller than her right).  Dr. Evans was concerned that Reagan may be toe walking because her left leg is actually shorter than her right.  She has referred us to an orthopedic surgeon.  Unfortunately we can't get an appointment with her until August.  If Reagan does have a leg length discrepancy they may consider stunting the growth of the right leg or having to surgically shorten it.  We are hopeful this is nowhere near our future.  Dr. Evans wants to see us again in July after the Botox treatments.

Although out of chronological order, I'll share that we met with Reagan's physical therapist this week.  She measured Reagan and didn't find a leg length discrepancy.  So we are hopeful the orthopedic surgeon won't either.

We also had an appointment for Cole with his Early Intervention Specialist.  Heather continues to be impressed with Cole's progress, although we still have a long list of activities we are doing daily to increase his fine motor skills.  We also spent some time talking about Cole's upcoming IEP meeting and possible goals.