Thursday, December 23, 2010

Update on my searching for answers

Well as some of my family and friends know I have been revisiting specialist again these last few months to see if we can answer some of questions concerning Bug.

One of the things that was recommended by the geneticist was to join Unique Rare Chromosome Disorder Support Group in hopes that maybe I could make contact with another member who has a deletion in the same chromosome area or close to it. Well, I got a letter this week from them saying that they found another person in a different support group in the USA that has a similar make up in the chromosome 20 region. I didn't expect something so fast. It has been less then a month since I joined.

After I signed up for the other group I was given the name to contact. I had to laugh at myself because I was nervous to contact the person at first! Silly, I know. It even took me a day to respond. I don't know why I felt that way. Maybe, it is because it's the unknown of hearing about another person's child and how this has affected them. Also, it could be a completely different scenario of medical issues, developmental delays and behaviours. I hope that it is beneficial for both of our families in some way. Then again she may hide after she reads my blog. I gave her the link and she may think twice about contacting me :-)

My hope and prayer for this contact that it will make both of use not feel like we are alone and that our child is not the only one out there that has an abnormal chromosome in this region, that this will just be the beginning of  locating others out there who may have an abnormal issue in this chromosome region, and that it will give us answers and maybe it will have similar issues that we face day to day.

I didn't even sleep well last night I guess I was to excited and nervous. Many blessing and have a wonderful day.

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