It’s SLOW going….for sure….
I have been trying, wanting, um…willing myself to start posting again. Knoah’s ARC for the longest time was my outlet for life. My outlet for sharing my thoughts about raising a child with dwarfism, my safe outlet.
I guess in many ways, it still is.
So, over the summer, Knoah fell ill. Let me back up…I was on my way down to North Carolina for my job. Knoah, was with my mom. He started not feeling well. Through out the course of the day, he started vomiting and continued to vomit. I was on the road, about 4 hours into the trip when I had to call Knoah’s dad to get him to the doctor’s. I was concerned about hydrocephalus as with Achondroplasia is a lifelong concern.
Knoah’s dad finally calls me to let me know that they want him transported to University of Michigan as they were concerned with Hydrocephalus.
Prepare for MAJOR ROAD FREAK OUT!
Driving. In the mountains. Alone. Crying. Not good.
I will just say I completed an 18 hour trip in about 15 hours…or so…
The end result was after 2 MRI’s was not hydrocephalus, thank god…but something more sinister. More lethal. An Arteriovenous Malformation (AVM).
Basically an AVM is a network of veins that have no capillaries between them. Imagine a sliding down a waterslide into a straw. It’s not going to work. With the amount of pressure and fluid traveling from the veins into smaller veins, there is likely to be complications. Since the fluid is traveling at such a high rate into a smaller network of veins, a stroke can occur.
I was at risk for losing my son, again.
Over the course of the last 6 years, I have accepted the fact that when I put Knoah to bed, I may wake up in the morning and he will not be with us. It’s not pleasant but what can I do. Now, I have these doctor’s tell me that my son who has Achondroplasia ( 1 in 45,000 births) has another birth defect ( I believe I calculated 1 in 300,000 births). So the two together is so rare, the last time it was seem was almost 40 years ago. *Drop Jaw, Gapping Mouth*
We had to go thru a lot of testing, tears, sleepless night, upset stomachs and staring into space, all of which made those 8 weeks in hell a blur.
When it all ended with a phone call from the doctor. “I re-looked at Knoah’s test results and I can say with 100% certainty, Knoah does not have an AVM”.
Even today, knowing it was a misdiagnosis, I hear those words ringing in my head, I still want to cry.
I get that this doesn’t even touch what emotions we were going thru. It is indescribable and it was over, just like that.