Friday, December 5, 2008

Getting warmer?

In my seemingly endless quest of figuring out what is "up" with my boys, I have gotten another good lead. In this journey, I feel like I take two steps forward and one step back. Sometimes that backward step is my procrastination or allowing life to get in the way. I could totally beat myself up about this, but really, what good would that do? I am pretty certain that if we ever find out what is wrong with the boys, we won't get a magic pill that will "fix" them. So I guess that is part of the reason that this is a journey and not a sprint.

Last year my aunt hooked us up with some genetics information from South Carolina. They recommended some tests and a year later, I'm finally getting around to doing them. One is a blood test and one is a urine test. I finally got the paperwork together and the day before Thanksgiving I headed to the lab. Ryan had his blood drawn like a champ - no tears, no fuss! The urine collection, well that's another story... I put a urine collection bag on the little man - I put the diaper on and we went about our morning. Well, I ended up with 1 mL in the bag and about a 100mL all over the diaper and his clothing. But that didn't matter because come to find out, I have to collect 24 hours worth of urine!! So needless to say, I haven't gotten that yet. Stay tuned for those adventures.

Now, with all the mess with Ryan and the school, I've come to realize that I can't blindly trust that they are doing everything in the best interest of my child. At some point, I'm going to have to cross the line from being the meek school-employed parent into the pushy-but-kind-school-employed parent. I am going to have to push for everything I can get for my children. So this morning, I realized that the time has come and the gloves are off.

I have long thought that Zach has traits of autism, but he is such a conundrum, who knows if it is low IQ, Autism, or some genetic funk. But Ryan doesn't show the same signs, so I keep coming back to Autism. So I took Zach to our neurologist hoping for the "easy button". But, basically Dr. Fernandez said that he definitely sees signs of Autsim, but he isn't comfortable making that diagnosis because so many of the syndromes that are out there carry the same symptoms. He also said it would look funny if all of a sudden after 7 years he slaps on the autism label. His point totally makes sense and I still want to know what the underlying condition is. He said that he will write up the notes saying he sees signs of autism and he recommended a behavioral pediatrician in Sarasota.

This doctor in Sarasota is semi-retired and has been working with autism for 25 years. He was on the leading edge and is considered one of the experts in the field. So I called to set up an appointment, but he chooses who he works with. His receptionist took down our number and said that he will call us back. She was also quick to inform me that the next available appointment isn't until March.

Dr. Kadison called me Tuesday night and we talked for over a half an hour and he is completely fascinated by the boys and he wants to see us before Christmas! How cool is that?? We go on December 23rd. Maybe we will finally get Zach's brain sorted out! What excites me the most is that Dr. Kadison spends 3 hours with the kids and pours over their records. I feel like we have finally found someone who will spend the time with us and is not just a cookie-cutter diagnosis factory.

I have to say, with all this negative stuff about doctors not taking time with patients, I have found two specialists who go above and beyond what they have to do! Dr. Fernandez and Dr. Kadison are fantastic!

1 comment:

May Family said...

Praise God! We will be praying for your family. Lets get together soon...maybe a double date??