Friday, June 22, 2012

My Medical Mystery

I am dumbfounded, I don't really know what to think or do now.  We got back our second round of genetic testing and Beckett's result were normal, ALL NORMAL!!  I am glad and I am shocked at the same time that the doctors found absolutly nothing in his genetic testing.  His microray came out normal, he has no signs of the three creatine disorders, and has no genetic irregularities of organic compounds and now I am at a loss.  The genetic doctors did say that they only find about 80% of the causes for global delays in these tests.  I was sure that they would find something, but they didn't.  This only means that we are headed to the next stage of testing.  This time we are going to try and get a x-nome test done.  This will search for very slight irregularities in the chormosomal DNA of the X chromosome.  This could possibly mean that he has a very rare genetic disorder.  This is scary because this means that the information on the types of syndromes is very limited.  My oldest daughter even said "maybe Beckett will be named after his rare disorder, if it doesn't have a name".  I told her I have mixed feelings about that.  I was hoping that it would be something well known so that we would know what the future could hold for our little boy.  On the other hand I would make it my mission to help any other child that was suffering from the same thing. 
Beckett has just recently celebrated his 4th birthday in May.  I have noticed he is getting more mature and is becoming more verbal than he ever has.  He tried to sound out the word "cake" to ask for a piece of his brother's birthday cake, I was so extatic that he said it. Just yesterday out of the blue he said "baby".  I was watching my nephew who was 14 months old and I told him to be nice to the baby, and he just said it clear as a bell.  I am not sure exaclty what is happening to Beckett, but I see accelerated progress with him.  He is actually beginning to go to the bathroom himself without being asked.  He still needs help, but he asks or pushes his button to go.  I do have to say I know God is answering our prayers.  I am coming to a point where I am accepting what I am being faced with and finding a piece with it.  I do admit sometimes days are hard, but it is getting better.  I am also trying to acccept that Beckett could just be "our little medical mystery" and might not ever find an answer.  Sometimes I do realize that that's also how God answers a prayer...He sometimes doesn't answer with what you are asking Him to do.  I am being taught something or He is growing my faith. Even though at times it is very hard and I really don't like it, I know he has my best interest at heart.
Jeremiah 29:11
For I know the plans that I have for you,’ declares the LORD, ‘plans for welfare and not for calamity to give you a future and a hope.