Unique

After David being diagnosed with a rare chromosome "genetic" disorder I was referred to a web site called rarechromo.org and I found there facebook page for parents who have children with a rare chromosome disorder. There is approximately 3 families that are registered in the United States and most of the families are registered in the UK. My son was tested by his Metabolic and Genetic doctor for Fragile X Syndrome and even though he had the defect of the "X" chromosome he did not have Fragile X. It's not until 3 years later that he got tested for the deletion of his genetic chromosome and therefore diagnosing him properly. I recommend that ALL parents have their children tested by a genetic doctor, you just never know what you'll find out.

Tuesday, May 31, 2011

His smile

When my son was born he did not cry right away, he did not roll over and sat up like a regular child would. He did not want to be held at 6 months and he did not want to go outside at 1 year old, he hated the bright sun and the loud noises, he hated the cry of children and the laughter of others. When my son was born he had unique and unusual features, his toes on both his feet were fused together and his pinkies are curved, he has a cleft jaw and a small head. He could not walk until age 5 and he has not spoken his first word yet, but his smile tells it all. He looks at you with his big green eyes and just smiles and nothing matters in this world, his smile makes me laugh and love him even more for what he is and not what he hasn't accomplished. Fragile X is a genetic disorder that affects everyone in the family, it is passed on to the born sons of the mother carrier, so please get a genetic test and help others Get To Know...Fragile X.

mmm chocolate frozen yogurt

After going to the mall and buying Sinclaire a "party" dress for next year's school dances, David had enough of the mall scene as always. So I decided to take my kids to get frozen yogurt at Nubi's-which is our favorite place. As soon as I parked the car he gave attitude and began to make naggy noises, I influence him to come out of the car and went in to get his favorite, chocolate with mm's and sprinkles. As soon as he saw the mm's he got quite and began to put his little fingers inside the yogurt cup, picking up an mm, one at a time. I had to pay and David was smiling now, once we got home he rushes to the table to sit and awaits for his frozen yogurt. Ahhh, the pleasures of creamy tasty frozen yogurt and what it does to a child to keep them happy.

Tuesday, May 17, 2011

Smack

I was sitting on the sofa minding my own business watching television, when my son comes behind me and "SMACK!" right on my head, I turn to see what the heck happened and there he was standing with a big grin on his face. He wanted something so bad that the previous family member ignored his demands and he chose to smack me for attention of his needs, I for the most didn't get angry just got caught by surprise because my son has never done that before. He is figuring out just how to get some attention in demand, but I let him know, "you don't do that and it's not funny", so I grabbed what he wanted from the fridge and gave it to him. David just wants his needs met and if thinks he can always get what he wants from me, I don't think so, he may get it from Dad all the time, but I love my son and treat him just like any other normal child.

Friday, May 13, 2011

Hairy situation

My sons hair is starting to grow again, I do not want to cut it I would like to see how he would look with long hair, kinda like a skater would have. The problem I'm having is waiting for his hair to get to that length, his hair goes out of whack, in all kinds of directions. It just looks messy and untamed but patience is the key and I hope that I can wait to see the outcome. For now I just put his hair in a fo-hawk (small mohawk). Ok lets give it 3 months and hope for the best.