Thursday, September 26, 2013

Genetics

Today we had our appointment with the genetics doctor. We have been anxious to see what he had to say and how he would weigh in on all that has been developing with tucker. It was a bit of an information overload and to be honest, my head is still spinning. I will do my best to compress the info and give the "gist of it".

He asked a lot of questions about development and what was being done so far. He also spent some time going over Tucker's chart and see what had been done. He told us he wasn't completely convinced he has the genetic disorder the immunologists are screening for, however the lengths they are going to find out suggests to him that they really must believe it to be that and they would know more from that standpoint. However, if all of the tests come back normal even after being sent to the national institute of health, he would like to do a new genetics test (not sure the name, something like whole xsome) which would basically screen the entire 23 chromosomes and look for and detect any abnormalities. They then match it up with any symptoms and traits he has and come up with a list of possible disorders and such it could be. Apparently this is a big test with some big decisions. First of all, it requires pre approval from the insurance company and some will not cover it. The genetics counselor suggested we wait for pre-approval until after all of the other tests come back. If they are normal, then the doctor has a better argument in that this would be the only way they could possibly diagnose tucker. He said along with finding these possibilities out, we may also find out a lot of other things that we aren't looking for. Like for example, since Carl's mom and her family carry the BRCA gene, if Tucker's a carrier we will find out and then know that Carl is also. But in knowing that information it can become tricky for like life insurance, etc. so we can opt out of getting that information or look into life insurance options for tucker before just in case, so that later in life he doesn't have trouble getting it. So as you can see, a lot of thinking and a lot more waiting. Needless to say my head is still spinning and I will be hitting my knees hard. God is the one in charge. I have to remember that. Again, this doctor was wonderful and was also put in our path. He is extremely patient and spent about an hour talking with us. I also asked him if he thought this could be something tucker outgrows, he said probably not and he was about midway between thinking it it nothing and it is serious. One other thing he suggested was getting a hearing test done to make sure his speech delays weren't due to that, and if not to probably go ahead and start speech therapy as well.

So there you have it. Now we wait. Please continue to pray for tucker and all of us in this journey. Please pray that our insurance will cover whatever is necessary and if not, that God will provide as he has this whole time:) thank you all so much! We appreciate the support more than we could ever express.

Hope all are doing well!

Love and blessings,
Traci



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It's a yes!

It's a yes!
how it all began...