Long Overdue

This post is definitely well overdue but for sure wanted to get it posted.  As you all know, Reagan has DiGeorge Syndrome.  It can include many aspects and some of which that have affected Reagan are her delayed walking, talking, and feeding issues.  Kids with DiGeorge typically have low muscle tone defined as low muscle stamina and endurance.  Most people don't think about it but muscles are not just used for physical activity such as walking but also in eating and talking.  Reagan has been getting three different forms of therapy pretty much for the last 2 yrs. now.
Her first therapy to start was Physical Therapy.  Her therapist, Donna, started with her when she was just 16 months old.  At that age, Reagan could sit up unsupported on her own but could not lay herself down when she got tired or vice versa.  I remember she would be happy laying on her blanket playing for a time and then begin crying.  Once someone came in and sat her to an upright position, she was then happy again.  One of the first things Donna worked on with Reagan was teaching her how to move herself from a lying position to a sitting upright position and vice versa.  Needless to say, we are now getting up and down from the floor as well as furniture just fine.  It's amazing to see the progress Reagan has made in her physical development.
Although, when someone looks at her they may see a 3 yr. old who doesn't walk independently and think "wow, she's behind" but the more progress I see out of Reagan the faster she seems to be "catching up".  At first, the milestones came slowly, but now that we have had a year free of hospital visits the progress has just seemed to increase in speed dramatically.

Reagan with Ms. Donna and Nolan

Physical therapy session with Ms. Donna

Reagan finally learning to crawl after her 2nd birthday!

Back in August of 2009, Donna recommended we get Reagan fitted for SureStep orthotic braces for her feet.  When standing, Reagan seemed to roll her arches downward toward the floor and therefore throw her foot and ankle out of alignment making it more difficult to walk.  We had her fitted and she has now been wearing the SureStep braces daily.

Reagan now has a walker that she uses to walk "independently".  Donna had brought the walker several months ago and Reagan had no interest in it whatsoever.  Then just before her birthday back in Feb. I asked Donna if she would bring it again and see if Reagan was ready for it.  Well, ready was not the word, she was more than Reagan.  All Donna had available was a walker that was one size too big for Reagan but she brought it anyway and Reagan hasn't slowed down since.  She literally runs with the thing now.
  I decided to "decorate" it to make it cuter and not so therapeutic looking.  After long searches for purple coban, I finally was able to get the walker decorated.

Purple walker complete with name in pink glittery letters

Over Spring Break, Donna had the AMBUCS reps over to her place complete with special needs trikes for all sizes.  AMBUCS is a non-profit organization supplying special needs kids with trikes and bikes to get them "moving".  We went out and listened to their presentation and Reagan tried out one of the trikes her size.  At first glance, it looks like a similar trike we have at home that Nolan used to ride but this one allows the seat to be closer to the pedals and we can strap her feet in the pedals allowing them not to slide off.  I pushed her up and down the road forever and she did not want to get off.  Even though I'm doing the pushing, her legs are going round and round exercising the muscles she would be using if riding it herself.  The thought with Reagan is for her to eventually have enough strength in her leg muscles to pedal herself.  We filled out an application for a trike and are hoping she will be able to get one. This would be a fun activity she and Nolan could do together as he learned to ride his bike without training wheels last summer.

In doing this update, I came across some fun footage that shows Reagan's progress and thought you'd enjoy watching it.

Make an on-line slideshow at www.OneTrueMedia.com

Thank you, Ms. Donna, for all you do!!!

**I will be doing an update on all Reagan's therapies, but will have to do them in parts as it takes time for each one. Physical Therapy- Part 1***