January 25 - Blood Draw

This mornings blood draw didn't go quite as well as Thursday's, but still way better then can be expected from a 19 month old. Since we no longer have to register its just a quick walk into the lab. We put our name on the list and set down to wait. There was only one gentlemen in front of us, so I was looking forward to a short and easy wait. A grandmother, mother, and young girl (4ish) came over from registration and were clearly annoyed, saying quite loudly "I don't understand how some people don't have to register and can cut the line for the lab". I wanted to look at her and say "Thank your lucky stars you aren't here with your child twice a week. If not having to wait for registration is a "perk" he gets, then so be it", but I didn't, I held my tongue. The little girl was allowed to run around in the waiting room, something we do not allow Levi to do, he gave me a few looks and definitely wanted to go join, but I would simply say to him, sit down on your bum like a big boy, and he would sit right back down in the chair. I am so proud of my little guy!!

Being a big boy and sitting in his chair waiting at the lab.

We went in to do blood work and the nurses were quick and efficient, just like last time. We try to make things not so scary and overwhelming for Levi, so on Monday and Thursday mornings we tell Levi we are going to see the "nice nurse" on the way to daycare. He has learned this and will tell us at home, "visit nice nurse?". Today before she drew his blood she was finishing prepping everything and he looks at her and goes "Nice Nurse!!". We all got a good chuckle out of that. The blood draw was quick and he had his minion band-aid and was off to pick a treasure from the treasure chest. Today he picked a blue bath fish to match his purple one from Thursday!!

I got the call around 11:45, Levi's platelets are at 528 today!! Still very good. Lower then Thursday, but still amazing!! :)

Upcoming Plan: Next blood draw is Thursday. Then next week we will be heading to the CHaD for Clinic to see Dr. V. He wants to access Levi's port and see how that goes. If that goes well, then we will begin the process of getting a home nurse for blood draws instead of going to the lab and having to poke the vein in his arm. (The home nurse can access his port, where as a lab tech can not). If that doesn't go well we will continue lab draws and go back a week later to attempt a port draw again.
We have also submitted all of the paperwork to be included in the USS Registry, this is the current research being completed. They will run genetic testing on Levi, Jay, and I for research purposes and will gather all sorts of information to hopefully help us all, and all the other families out there.