Therapy update, bone age test and end of another school year!

We had a great appointment with the physiatrist, Dr. Morozova.  She was very pleased with Reagan's progress and we had a heart-to-heart about therapy.  She said that research actually shows taking time off can actually help progress long term.  I spoke with Reagan's PT at the next session and we will be reassessing her next week and then make a decision.  Given Reagan will be in school full time in the fall, getting the much-in-demand 4pm therapy appointment will be difficult.  Not to mention getting TWO (one for each child and another one for PT).  As you probably remember, we had to be removed from the INOVA therapy schedule since we'll be missing more than 2 weeks while we are at John's Hopkins - Kennedy Krieger.  We are on the wait list for Fall and will see how that goes.  However, the idea of cutting back on therapy is very exciting given we expected to be going for several more years.  Even taking a few months off after John's Hopkins would be nice.  Reagan has had PT every week or every other week for 6 years now.  That's close to 300 appointments!  If you add another 300 for weekly OT that's over 600!

Unfortunately Reagan has started having pain in her left leg rather consistently so the PT recommended we start more consistent stretching.  As you may remember, the leg brace she used to wear forced her ankle into a 90 degree angle.  Now that she's not wearing that, her toe tends to drop and she's not getting the stretch in her calf that she used to get.  We were able to purchase some stretch bands and it has become a group activity with the kids. The other day Reagan decided she needed to stretch until she counted to 120.  Great practice all around for her and Cole!  We are hopeful the stretching helps.  As long as she doesn't start to fall more I don't expect we will have to go back to wearing a brace, but that's definitely on the table for discussion given the pain she has been having.

In addition to the physiatry appointment, Reagan had her 6 year pediatric appointment. Although her appointment went well, the pediatrician has some concerns about a possible imbalance in her hormones.  She ordered a bone age test which involves an x-ray of her hand to determine if her "bone age" matches her "actual age".  Luckily the results came back normal, but she is still concerned so she is recommending we consult with an endocrinologist.  I've made the next available appointment for October and we will be having blood work done prior to that to start developing a baseline and see if there is anything we should be concerned about.  Apparently children with cerebral palsy are at higher risk for these types of complications.

To end with some exciting news, today is the last day of Kindergarten for Reagan and the last day of preschool for Cole!  He will be in the pre-Kindergarten classroom next year still at Potowmack Elementary School and Reagan will be in first grade.  His classroom will be a reverse-inclusion class so it will be all rising Kindergarteners with half normally developing peers.  He's very excited!  Reagan is excited about first grade…mostly because she will be able to eat lunch there.  Both are very sad to be leaving behind their amazing teachers.  I haven't told them they won't be riding the same bus next year…we'll save that for the end of summer.  And with that, we are excited to start the summer and have some pool time before camps, vacation and our trip to Baltimore in July.  And unless we run into illness, we have NO doctors appointments until Reagan's eval at UVA at the end of August!  YAHOO !