Tuesday, August 28, 2012

Not what I had planned for our weekend.....


Had plans for this past weekend.
Simple plans, but I had them!

This is not what I had in mind:

Sick baby
Several Dr calls in the middle of the night

 ER visit for a chest xray turned into a 2 day stay in the Hospital!

 He had aspirated on his vomit , due to the "virus" he had
 Then the chest xray showed "Hazy lungs" and given his heart condition... we got to stay...

Thankfully we finally got to go home, and after another day of resting he is feeling much better!

Wednesday, August 22, 2012

Family day at the Farm

We had a family fun day since Cory took some time off work.   We went to Deanna Rose Family Farm  last week.  We had a blast!!

I think Colby had the most fun of all
 But Mason had a great time as well!
 Colby's favorite part was the pedal tractor track

 oh, and he loved the goats...and they loved him too ;)

Standing and Steps

Mason is my fighter.....

This kid amazes me everyday.   For things that come naturally to other kids, he has to work HARD to do.  For example: Standing....

Most kids just simply stand.  end of story.  It doesn't require Physical therapy x2 a week , Spio suit, sturdy shoes, and ankle braces.... It just comes naturally.    But with Mason, we work for every little accomplishment.  We work throughout the day (everyday) to help him keep up with the other kids as much as possible...... but these other kids, dont have down syndrome.  None of them went through open heart surgery.  So we work harder.  We try everything that could help him along ( spio suit , ankle braces, extra therapy)   We educate ourselves in physical & occupational therapy at home ( gross motor skills for children with Down syndrome & Fine motor skills for children with Down syndrome are GREAT BOOKS)  We do all we can to keep him "chuggin along".  And you know what... He is doing AWESOME!!!!!   Yes, he is a bit behind the "normal curve", but he pretty much lost all his strength after his heart surgery.  So at 5mo old.... we started all over. 

So when Mason stands up in the middle of the room all by himself, we celebrate (BIG TIME).  Because if you think about it.... We were told he would never make it to birth, let alone stand/ walk/ run!  So I look at his beautiful face and just beam with Pride,  because he is doing great.

We just got his ankle braces this morning... we will update on those later!  

isn't his smile just awesome!! 

Tuesday, August 7, 2012

Tape, Spio, orthotics, OH MY!!!!

In the world of "special needs " there are a few things we are learning:

Kinesio Tape
Compression garmets
Just to name a few......

There seems to be a bit of debate over using Kinesio Tape for core muscles in children with down syndrome.  Im not going to debate over what is right or wrong.... Im just going to tell our experience.

Our Physical therapist with TARC , said that she doesnt like to use Kinesio tape because if its not placed in the correct areas / correct way it can do more harm than good.

But here is the info I found on Kinesio Tape for children (Cowgirl Up  HI JEN!)

Kinesio Taping is great for kids because:
  • It encourages the body’s muscles to complete multiple, correct repetitions of a desired movement over time. 
  • Anywhere your child’s therapist would put their hands to encourage or assist a certain movement, the therapist can apply the tape to guide the body in the correct movement.         
  • Your child will complete hundreds of correct repetitions, rather than practicing incorrect movements. 
  • Does not make the body do a certain movement, it makes the body want to do each movement correctly.

We may try it still....... Actually we probably will.  We like to try just about everything we can that might benefit Mr. Mason.
look at that weight shifting

Since our PT wasnt big on the Kinesio Tape, We got a Spio Vest instead.

 Happy to wear his Spio vest
Here is what we have found on it:

The SPIO vest is ideal for children with poor core muscle activation, stabilization,
or weakness
  • Provides shoulder-trunk-hip stability and mid-line orientation
  • Increases body awareness
It adjust in the back (velcro) so he gets the perfect fit
So.....Its pretty  Similar (im going to use that term loosely ) to the tape.

Both would help Mason become more aware and in control of his core muscles.

So for right now were just doing the Spio Vest.

Mason actually doesnt mind it.  He can wear it all day, and its easy (and quick!!!) to put on and take off.

The things I have noticed the most is :
  • He stands for longer periods of time.
  • He is more balanced while standing.
  • He stands/sits up straighter.
  • He seem more "in control" of his movements as well.

I think this is a great tool to use in getting us closer to independent walking.

Also, Mason has his new ankle braces on order....more on that later!