First Visit to UCLA

We finally got to see a genetic counselor and get a blood test done today!!! This is a huge step that we have been waiting over a year for. With Huntingtons disease the only way you can officially be diagnosed it to get a genetic blood test done so they can see what the repeats of that particular gene is. So even though Curtis has been diagnosed by a neurologist we have not been able to start the disability paperwork. All of the insurance companies we have had have made it so difficult to get the test done, so with the help of our parents we decided to pay cash to get this done finally.
So today was the day. UCLA has a Huntingtons center of excellence so they are the best place to go if possible. For some reason you get seen in a pediatric unit so we had some fun with all the fun painted walls(see submarine picture below), it was relaxing for us too. We saw two genetic counselors who were both wonderful and so genuine about wanting to help us. Within a minute of the doctors coming in and without them even talking to Curtis one of them turned to me and asked what I thought the result of the test would be, I said that I was sure it would be positive and he said he agreed. Its always hard to hear someone say that even if you know its true but it was also good to be reassured that he knows so much about this disease that he could see it in Curtis so fast. Because it was so obvious to them so quickly they are putting a referral into the neurology there to see if they will approve our insurance even before we get the test results. So please pray that it works out, we would love to see their whole team that specializes in Huntingtons.
The hardest part of the appointment was the doctor explaining to us that our kids can get it earlier than Curtis because the gene expands when the dad passes it down. I already knew that but it is still super painful to hear it again and to hear it in a way that is telling you to watch your kids closely. I cannot even imagine dealing with my kids getting this as a child. Please continue to pray with us that their brains would be protected and stay healthy.
At one point the doctor looked at us and said you both seem so calm about this, is this just putting on a front for us or is this real? He went on to say that they are there for us in any way we need and that we can be honest about how we are doing. I explained that this is something that we have been processing for awhile so we are not in shock and that we just take it day by day. Honestly we could not even be appearing this calm without the peace that God has been giving us though. Most of you do only get to see the calm and strong side of us but we do have days where we are overwhelmed and scared. There are plenty of days where I do not want to get out of bed and face reality and days where I just cannot stop crying... But then there are days filled with hope and joy and wonderful time as a family.
Now we just continue to play the waiting game... wait on the referral to go through... wait for a few weeks to get the test results.
Continue to pray that Curty's symptoms would slow down. Pray that we would fall into a new normal of him being a stay at home dad while the kids are being home schooled. Pray that I continue to get enough work for us to live off of. Thank you all so much for your prayer and support.