Chromosome 6

So, as some of you know Grayson has had some things going on with his development.

He has had hearing loss (which just recently "fixed" itself), had to wear the cranial band(s), and has been a bit delayed in his developmental milestones and has been getting Physical Therapy and Speech Therapy.

I have known that something was not quite right since he was about 5 months old and hit a plateau in his milestones and as time went on my mothers intuition kept telling me to keep an eye and do not let the doctors take it lightly.

Well, I'm glad I didn't take it lightly...

We finally found what seems to be the reason behind these things.

It turns out Grayson has a Chromosome Deletion of Chromosome 6q25.2-25.3

I do not know much about this diagnosis and apparently the doctors, including the geneticist don't either. It is a very rare deletion and there are only a few case files of other children on record with a similar deletion.

What we do know is that this chromosome deletion can cause hearing loss and global developmental delays and has been known to cause more serious medical and developmental conditions in other children.

That is all we know right now.

It is nice to have SOMETHING to go off out but it is also VERY frustrating to not be able to have further information to know how to better help Grayson in his development and if he will ever progress to catch up to other children his age.

Don't think I am backing down and settling for that little bit of information, I intend to dig my heels and and try to figure out everything that I possibly can to help our little boy.

I wish Zak was here :-\

Please keep Grayson in your thoughts and prayers.


until the end of all time