Our Special Boy

Our 'special' little boy, Brandon, was born at 33 weeks and was, for the most part, healthy.

He started having these eye tics and then would go on to do crazy things with his arms. 

After doing brain studies (EEG's) where they put a bunch of wires all over his head, he was diagnosed as having INFANTILE SPASMS.   This is some kind of rare, epileptic disorder that happens to infants in the 3-12 months group.  

Look how cute.   He made everyone smile and was just a blessing!

It was rough putting Brandon through those tests, which they did on and off after trying  out certain medications.    The infants have to be sleep deprived and then have all those wires  on their heads and THEN have to hold really still.   Not pleasant!

He did well for a few years, walking around with his little walker and having the funniest personality ever!

He had issues with eating and drinking and was found to be aspirating his food.   We took him to so many different doctors and we were told that he had a genetic disorder, Mitochondrial Disease.   I guess it occurs when the mitochondrial cells fail to produce energy for the cell/organs.  

He would end up having a feeding tube inserted  and it just seemed that his muscles got weaker, he wasn't growing as he should and his coordinating wasn't great.  

We worked with many therapists to strengthen and stimulate him.

This is a picture taken at his therapy clinic.   He wore these plastic shoes called 'dafos' that were made especially for his feet.  They wrapped around his ankles and were then stuffed into the shoes.   Looked uncomfortable!  What a trooper.  You can see that there is a giant rubber band wrapped around his lower leg and then around his waist.   He was not always thrilled with these therapy sessions.   But he did everything with a smile. 

So hard to put your baby through this.

These little guys try SO hard.....they want to do the same things all the other kids are doing.  

The hardest thing about having a special needs child is not knowing how comfortable they REALLY are.  Brandon would make these little whimpering sounds but he could never truly tell me how he felt or what he wanted.    When he was exhausted he would make these funny sounds and point to his bedroom.   I guess everyone has there ways to communicate. 



Our little angel is in Heaven now and dearly missed!

Thanks to  Kelly @ Kelly's Korner  for giving parents the opportunity to talk about their special babies and to educated others about their conditions.