I am still frustrated at the fact my son has no formal diagnosis. The spinal fluid that was sent away in November for anti body testing was sent to the wrong lab. It was never repeated. We found out in April 2017 it had gone to the wrong lab. This angers me. I can accept … Continue reading I See Him
Uncategorized
Everything and Nothing
Today we sit in the children's ward at a hospital closer to home. Only a 20 minute drive. We have the whole bay to our selves. It's the 29th of May 2017 and Kade is having his fifth round of IVIG. No more traveling to Edinburgh which takes an enormous pressure off. I was anxious … Continue reading Everything and Nothing
At Last
Tuesday the 31st of January was the first day of Kades IVIG. We rode in the taxi to the hospital at 8am. Kades body crashed around, the whole car shook continuously, it took an hour to get there. The ward was by far the best experience my son had had so far in his journey. … Continue reading At Last
Granted
As I write this I only hope it can help others. I know how often I searched (I still do), read blogs, articles, anything I could relate to really saw me through the darkest days. Typing the same words into Google but in a different order, with some insane hope that I would find more … Continue reading Granted
The boy on the train.
Desperate for Kade to be seen by a doctor I googled private health care in the UK. I don't even remember the name of the company. I called a number explained that I wanted to see a doctor who had experience with PANS/PANDAS syndrome. There was a doctor in Cambridge. It would be an over … Continue reading The boy on the train.
Time stands still for no man
When tragedy hits time does not stop, like you expect it to. Like you want it to. Stop the world I want to get off. Just for a minute please. Let me gather my crap together, sort through it, then we can carry on ok? The reply to that one is no, always no. A … Continue reading Time stands still for no man
You can’t catch me.
January through May were strange months. Kade was run down. Contracted infection after infection. Ear and urine. He developed molloscum. Complained of back pain and developed and awkward limp. My son was not 100% this entire time. A healthy child, only ever sick once or twice a year, when the weather changed from hot to … Continue reading You can’t catch me.
The slip before the fall.
I don't remember the exact date in October 2015. All I knew was my son was acting weird. That's the only word for it. Up to this point, he had sailed through life, smart, funny, creative, kind, quick witted, sensible, he had all these desirable qualities and more. At almost 12 years old I was … Continue reading The slip before the fall.
Why?
This is the excerpt for your very first post.
This is it 