Tuesday, April 03, 2007

Is this MY fault........

I know you have been wondering why I haven't updated Kyle's blog lately....well hold on to your hats 'cause we have added another "spoke to the wheel". After I returned from my three weeks training in Columbia, I had a lot of catching up to do at work, home and more importantly - playtime with Kyle....yeah spent time with Gator too (LOL).

Anyway, I received a call from the genetics lab and 3 of the 4 tests had been completed. Two of the tests showed no abnormalities, but the third showed a positive result for Fragile X Syndrome. Yes, we have something else to worry about and I don't like what I am reading on the internet. My cousin Kristi told me to stop reading and concentrate on our Monkey....just to wait and see what his genetics doctors say on Thursday.



I had a bout with guilt because I was the one that passed the "X" gene to Kyle that gave him the "fragile X syndrome". Now, I know logically that it was not anything that could be helped, but it was like I was going through a period of grief.....again....first autism and now this. I know that God is not going to give us more than we can handle.....but......????? With the help of wonderful friends, family and Kyle's doctors, I am getting over the "guilt" and focusing once again on Kyle. Just like Leigh Anne told me, take the internet with a grain of salt and listen to Kyle, my gut feelings and his doctors because every child is different and the internet usually has the worst cases on there.


I know you are wondering....what is Fragile X Syndrome.....it is "the most common cause of inherited mental impairment. This impairment can range from learning disabilities to more severe cognitive or intellectual disabilities. (Sometimes referred to as mental retardation.) FXS is the most common known cause of autism or "autistic-like" behaviors. Symptoms also can include characteristic physical and behavioral features and delays in speech and language development. " (according to www.fragilex.org)


Fragile X syndrome can cause a child to have autism or an Autism Spectrum Disorder (ASD) though not all children with fragile X syndrome have autism or an ASD.
FACT: For between 2% and 6% of all children diagnosed with autism, the cause is the Fragile X gene mutation.
FACT: Approximately one-third of all children diagnosed with fragile X syndrome also have some degree of autism.
FACT: Fragile X syndrome is the most common known single gene cause of autism
For more information please click here: http://www.fragilex.org/html/autism.htm



So, is your head spinning like ours has been???? But you look at Kyle and you do not see "mental retardation". I can not imagine our precious Chunky Monkey in a group home....he's too smart and I will not allow it! As Gator said...."we will beat this and we'll show them all" that our Monkey will overcome whatever is thrown at him! And to prove that the last three pictures here are him signing "I Love You".....see one way or another....he will be able to communicate!

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