UVA Graduation AND a big anniversary for Reagan!

WAHOO! And just like that we're done and Reagan has graduated from UVA constraint therapy for the third time! Ok, who am I kidding….I feel like we've been here forever and we are all exhausted.  We started with a quick trip to the Bounce-n-Play to run around before heading to the hospital at 1pm.  Emily took Cole to the Downtown Mall to visit the outdoor carousel while I sat and waited for Reagan.

Reagan played several games today to include one where she had to practice making a fist and playing Eeny, Meeny, Miny, Mo with the cards on the table.  Although making a fist isn't difficult, she had to supinate her wrist to hit the table with her fist as you can see Ms. Sue doing.  With the same game (Funny faces) she had to pick the cards up and stack them.  Also a very tough task that requires supination and wrist extension.

Since today was her last day the focus was on explaining the skills she should be taking home and practicing.  A big focus was on "floating lefty" and the fact that lefty needs to help and not just "sit around on vacation".  I know it sounds harsh, but lefty often gets forgotten for tasks that don't necessarily NEED two hands but that could be a lot EASIER if two hands were used.

There are four areas of strengthening that we have as homework from this program.  I have a two page program to follow at home, but here are the highlights:

• Wrist Extension: Place forearm on table so hand hangs off the table, palm down.  We have Reagan lift a 1 pound weight up as far as she can.  Let it drop as far as she can between lifts.  We are supposed to do 5 sets of 20 every other day.  Our focus should be to encourage her to lift her hand/wrist higher as she gets stronger.
• Finger Strength: With wrist extended to at least neutral, squeeze a squishy ball or play doh or hold onto a top or toy against some resistance.  Try to complete 5 sets of 20 every other day.
• Shoulder flexion: Raise arm fully above head to reach for objects.  Aim for 5 sets of 20 every other day.
• Weight bearing: Yoga continues to be a great way to do weight bearing through her arm with an extended wrist and elbow. It's also an excellent overall strengthening activity.

As far as future sessions here at UVA Children's Hospital, we will come back in 6 months and again in a year for another assessment to meet the requirements of the study.  Unfortunately…which I didn't realize…we can't do ANY constraint therapy for a year from the day we finish this session (today).  That means she won't be able to do CIT next summer unless she misses school..which I am not willing to do.  I spoke with Sue and she would really like to see Reagan participate in electrical stimulation for her hand.  We've considered this for her leg, but haven't discussed it for her hand.  Unfortunately, we need an "intensive" program (multiple hours for multiple days) in order to justify the drive to Charlottesville.  Needless to say we will be investigating our options for next summer and I'm sure there will be more to come about that!

And although therapy is done, Reagan is scheduled for a four hour assessment tomorrow similar to the one she had on our first day.  We are hoping it will be just as short as the first one too!  Luckily I was able to schedule Cole for therapy tomorrow during Reagan's assessment so we'll get everything done in the morning and head home.  He has been very receptive to the therapists here so I'm excited he has been able to "play" too.  Every day when Reagan goes to therapy he says, "do I get to go too?"  Glad he likes it more than Reagan did at his age!

As I think about the last month and how much progress we've made it seems fitting that today is the 5 year anniversary of Reagan's brain surgery.
I remember this day like it was yesterday.  I was scared to death watching my 2 month old get wheeled away.  I had no idea how hard it would be to see her intubated (tube down her throat) and lying on a hospital bed and not be able to pick her up and tell her it was all going to be ok….because we had no idea if it was going to be ok.  And I had no idea when the surgeon said "she may be a little weaker on her left side" that she meant Reagan would have Cerebral Palsy and would face years of grueling therapy.  I think about the fact that Reagan has been going to weekly and eventually twice weekly therapy sessions since she was 3 months old.  I think about how she used to fight the therapist.  She would cry.  I would cry.  And I would doubt…I would doubt whether all this time and emotional pain was going to help her or ever make a difference.

But shortly after our first constraint program in March 2013 I have not doubted for ONE DAY that the time, the tears, and the fights that we have endured together are worth EVERYTHING for the amazing progress that we have seen.  I went from thinking a weak left hand meant it would not be as strong….to realizing it meant that it may never work.  But when I look at where she was 5 years ago today to where she is now, I am literally blown away at the miracle of the human brain and the power of persistence. I feel so blessed to be her mom….