Children’s Hospital January 2013

This morning we woke up at 5:30 to head down to children’s hospital. Our water was frozen and something had burst spraying water everywhere under the house. Frozen pipes are one of those things that make living in a trailer almost not worth the cheap mortgage. So we have shut off the water and my mom and brother are going to try and sort it out for us; thank god for family.
So now we are on the shriner care cruiser. If you don’t know what the care cruiser is it’s a luxury coach operated by the bc yukon shriners that picks up patients and their families that need to travel to get to medical care at BC Children’s’ Vancouver General or Shriners hospital in Seattle. The bus is free, there is a bed for someone that needs it, seat belts in every seat that adjust for kids so you don’t need to lug booster seats and even car seats installed for little ones that need 5 point harnesses and recliners for napping. It makes 3 trips a week to Vancouver and back and did I mention it’s free! I have much love for the Shriners.

We got picked up in our town at 8:15, now we are on our way to pick up another family on the other end of the valley and then we will be off to Vancouver. We are staying at Easter Seals House, another amazing resource for parents of kids that need to travel to BC Children’s, the cost to stay at Easter Seals house is $20 per night for adults and $7 for siblings traveling with you, the patient stays for free. So super cheap accommodation on a few blocks from the hospital and 2 minute walk to catch a bus to the sky train station to go anywhere in the city you want to go. Now if the super cheap rates weren’t enough each room is actually a small suite with a kitchenette so you can eat in the room and save money on food while you are there, oh yeah and if you live in BC the super cheap room rate is covered by the bc resident program so actually it’s free. Yay for low cost trips!

So now that we have covered how we are getting there and where we are staying let’s get to the why we are going. It is time for Princess’ 3 month check in with her neurologist, since there has been new seizure activity and general feeling like crap he will be getting some tests done this time. She has an MRI and spinal tap scheduled for first thing tomorrow morning. Because 5 year olds have a hell of a time staying still for more than 2 seconds she will be put out for the imaging, thankfully that means she will also be out when they do the spinal tap. Hopefully this will give us some answers as to why she is getting worse instead of better and maybe give us a better idea of how to treat this. I’m scared to death that something will show up on the MRI that shouldn’t be there but I’m trying to keep that out of my brain as much as possible. I’ll keep you posted.

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