Activities for Spasticity Hypertonia

Since so many of you comment on my Favorite Phrases updates, I will keep them coming !  Since my last post I got two new comments worth having a good laugh about.  The first was a waiter who said, "Are those fashion glasses or does he actually need them?"  The second was a man waiting for table at a restaurant.  He very innocently asked, "What's wrong with his eye" (Cole had on his patch).  After a two sentence explanation he said, "Well he probably just wanted to be a pirate."  Nice.

Well we rarely update about mom and dad on this site, so I wanted to add an undate that is non kid related!  I was recently voted in as a new member of the Board of Directors for Preemies Today.  I have been a member of the non profit since the twins were born and it has been a great resource for information about preemie related issues, building amazing new friendships, and a good way for me to support other parents traveling tough journeys.  I am honored and humbled to be asked to sit on the board and look forward to helping increase the awareness about our programs.  If you haven't already visited the link I have on my blog definitely take a look and share with others who might need our support.  www.preemiestoday.org 

Johnny has also had exciting developments with work at the National Center for Missing and Exploited Children.  He has moved internally and is now the Executive Director for the Missing Children's Division.  He has a lot more responsibility and a lot more hours but he is excited about the new challenges.  Although work in his industry is very difficult some days, it is also very rewarding.  I am so proud to know he goes to work every day to make our world safer for children everywhere.

We've had a very good week with appointments.  Cole had therapy with Heather this week and she is very pleased with his progress.  He is now able to identify several alphabet letters and can identify most shapes, including trapezoid, pentagon, octagon, circle, square, oval, triangle and diamond.  Notice I didn't include rectangle - he still confuses that with the square so we're working on that one still.  Most two year olds should have a 150 word vocabulary and be combining two words.  Cole is definitely on track developmentally and even a little advanced since he sometimes combines three words and says three syllable words (like trap-e-zoid).  Of course we don't assume this means he won't have developmental delays, but we are so excited that he continues to learn new things and is a very happy and destructive little boy.

Reagan also had a very good week at physical therapy.  Now that she is older, there are a lot of new activities we can do to help her improve movement.  As you know, she has spasticity hypertonia (high tone) in her left leg.  We focus on activities that require her to depress her heel and bring up her toe.  Her feet are finally big enough to try swim flippers.  This is a great activity with kids with spasticity because you really have to lift your toe to walk and not trip on the flipper.  She also practiced with moon shoes.  Again, these are made for kids with bigger feet but Reagan rocked those shoes!  The premise of this activity is that her feet are supported by rubber bands that are suspended in the shoes.  By setting the rubber bands tighter in the front, her heel sinks deeper and it stretches her foot as she walks.  The third activity we worked on this week was walking on bubble numbers.  These are soft plastic dots that she must walk across from one to the next.

Reagan also had a very good occupational therapy session this week.  She was fitted for a new glove and we got it this week.  It just happens to be pink.  Shocked?  I convinced her it is a Super Glove for her Super Bat Girl costume and she has been very good about wearing the glove more than she has in the past (she grew out of the blue one we've had for about a year).  Reagan's biggest challenge is being able to control her fingers.  The glove helps her extend her thumb.  She also has a hard board we can velcro the glove to so her other four fingers are extended.  Our hope is that if her hand is kept in this position more often, it will be more natural for her and help her learn to open her fingers.

Not sure why I didn't see it coming, but the new glove has also brought about a lot of questions from strangers.  The first few times people asked what was wrong with her hand I would answer, "she has cerebral palsy and has trouble using her hand."  This comment always ends in awkward silence and a sense of pity.  I now respond, "Reagan, why do you wear the glove?"  And with a big smile she proudly says, "it's my Super Glove and it helps me stick my thumb out."  Generally this ends the questions and helps Reagan to be proud of her glove.  The older she gets the more she is recognizing that things are harder for her than for her friends.  It is an ongoing struggle for me to know how to coach Reagan to feel confident.  What do I encourage her to do so she can succeed?  What should I help her avoid?  A child recently told her she was clapping wrong (because she can't get her fingers straight).  She fell to the floor and with a tear in her eye she looked up at me and said, "but mom, it's hard for me."  It took everything in me not to cry with her.  I pray daily that the spirit you see in this picture lives strong within her for her whole life - regardless how many people ask what's wrong with her. God give me strength to remind her every day how amazing she is and how proud I am of the many things she does so well.