Monday, January 30, 2012

Chamber of Hope Day 1 and Genetics Appointment

Today was a busy day.  Finn caught the bus for school this morning, I took Camila to swim lessons, got home, fed Camila lunch, got her down for a nap, and left to check Finn out of school from school to make the trip down to All Children's Genetics in St. Petersburg and follow the doctor apt with his first Hyberbaric Oxygen Therapy treatment.

For the genetics appointment, my husband, Finn and I came prepared as possible.  We arrived to find out that the research we printed off on treating genes with gene therapy and stem cells is meaningless for Finn's syndrome(s). 

We were informed that genetic syndromes like Downs Syndrome is relatively easy to occur and Finn's situation is different and very "hard" to happen - referring to what every random event occurred when the embryo we now call Finn was formed.  Finn is one in 8 billion.  His future is not predictable and some times I do have to pull myself back into reality that unpredictability is not so bad.  Even typical children have unpredictable futures.

I will say I did like this new genetics doctor and counselor because they were blunt.  They told us like it is and it was hard to hear, but really, there isn't any gene therapy that can be done for Finn's issue rights now at least nothing in the United States.  Many of the reports written overseas are not factual and are not subject to scrutiny like they are in the U.S.

I was near tears the whole meeting because I thought I had come so prepared and was going to prove that there are solutions out there if I can get someone to take an interest. It was a tough pill to swallow, but I did leave the geneticist's office for the first time feeling like they are worth our time and money. 

From that appointment we rushed over to Chamber of Hope.  We got there a little late, but the volunteers and founder were so friendly and helped get Finn and Dan into the "space shuttle" right away.  Finn was very scared and cried at first, but after the chamber inflated, he was fine and he spent the next 45 minutes reading, playing trains, and snuggling with his daddy.  We have 39 more treatments to go before he gets a break and then we will see if we need to/want to do additional treatments. 

Tomorrow the folks at Chamber of Hope plan to take a video of Finn as a "before" and will do another video at his last treatment.  I am hopeful to see results but I'm trying to keep my expectations low.

Here are some pictures from Chamber of Hope.

Daddy entertaining Finn

Finn looking out the "space shuttle"

The space shuttle

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