The paranoid woman...

Connor's chromosomal condition still confuses me more than words can describe. Instead of a syndrome we have a list of could be's, maybes, no's and yeses. I understand my role as his mother and I know that I need to do some things to check the list of maybe's each year. This is all fine to me but why cant I find any info on the internet or from his doctors at that regrading his specific deletion?

Today I decided to look up Connor's chromosomal translocation to see if that led me anywhere. Well, it did. Straight to leukemia. Now I am paranoid and think it might be a possibility that he could be at a higher risk due to the 12,21 translocation. Connor is relatively tiny for his age (due to missing genes) and does not grow very quickly. I wrote his genetics doctor explaining that yes I am over protective and yes I can be a bit paranoid at times but is this something I need to be worried about? I hope they don't think of me as being a freak or anything.

If I had some answers that better explained this whole situation, I might not be such a nervous wreck all the time.

ACK!

Soon to be a New Year...

,I must say that I am somewhat glad to see 2009 leave and excited to see what 2010 brings us. 2009 brought my family many challenges from finding out our son has a chromosome deletion and translocation, to the scary thought of him having a horrible and fatal disease to finding out he has an underdeveloped brain. This year has also brought me many hugs and kisses from a wonderful husband and son. I must say that this year has made me a much stronger and more responsible person and has taught me patience and how to hide my feelings very well.

It has brought out my jealous side and has also brought out my lovable and happy side. I will always remember 2009 as being the year we were scared to death of Leukodystrophy and I will never forget the doctor who told us that Connor had that disease. That was the worst three weeks of my life. Finding out he did not have that disease was by far the happiest day of this past year. It honestly makes Connor's issues seem like nothing. The fact is, Connor is here, healthy and happy. It does not matter how many tests, therapies and headache we go through on a daily basis. We do it for him and will continue to do this as long as need be.

Lets hope 2010 brings us good luck and hope. I am hoping for some genius to come along and create some sort of a chromosome replacement for all of those people out there in the same boat as us.