Friday, June 10, 2011

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.  


  1. Beautiful tribute. Thanks for sharing.

  2. Oh he is a doll. Thanks for sharing his special story with us.

    I'm so sorry for your loss.

    And so nice to meet you. I love your blog, I'll be back.

    I'm into photography too!

  3. I'm so sorry for your loss. I cannot imagine losing a precious little guy like yours. He is absolutely gorgeous.

    Thank you for sharing his story.

  4. What a sweet face! I'm so sorry for your loss.

  5. Thank you for sharing your story, he was certainly a beautiful boy!! You are so right, it is hard when a child cannot tell you what is wrong and we so want to make it better. I am so sorry for your loss. God bless you and your family.

  6. Hi, Kelly! I was just stopping by to thank you for posting our button & for blog hopping with us. I just read Brandon's story. Thank you for sharing it! We lost our little Rachel Faith in 2002 to Trisomy 18. Perhaps our little angels are playmates in heaven :)

    Take care!