Wednesday, June 3, 2015

Life With/ Life Without: Platelet Disorder Support Association

"Ignorance is bliss". How many times in my nearly forty years have I heard that phrase? And, in the case of PDSA, that definitely holds true. No one I knew in all that time had a platelet disorder, so naturally, I had no need to see if such a thing existed.

After that first blood draw ordered by the pediatrician, once we had gotten back home and my mother the nurse told me what the ITP was in the diagnosis code, I hit google, and I hit it hard. The next morning, when I got the results and was asked if I need a referral to a hematologist, I thanked my tired self for leaving all the pages I had found, and vowed to return to them once I'd made the trek to Children's. 

When we got back home, after all was said and done, the diagnosis confirmed and the kids worn out and put to bed, I sat back in this very chair and started pouring over the still pulled pages. I joined a Facebook ITP support group, which is run by PDSA. I read a lot that night, and sent for some free materials to be sent to give me all the information I could get my mitts on. I even ordered a storybook to explain it to the kids.

When I got all that I had requested from them just a few days later, I skimmed through a lot, and was generally in awe of what I'd been sent. I'm now chomping at the bit for my check to hit next week so I can get a membership and start Landry in the Poke-R Club (more on that later). There is a discussion group with an entire section for the parents of children with ITP. Between the discussion group and the Facebook page, and the hospital, I feel like I always have somewhere to go with questions and vents; problems and triumphs.

I read up on steroids to treat ITP. Before the next appointment, I'll go over the literature about IVIg, which is the treatment we will try next if his numbers plummet again. It's where I got the wild hair to change the background of the blog purple.

They have an annual conference that I would love to go to, but alas, my funds are limited at present, and honestly, I'm hoping Landry's clear of ITP by the 2016 conference. Only time will tell with that, though. They have run/walks across the country, both actual and virtual. They have a store as well as a treasure trove of information that you can order. 

I want to support them, because PDSA has made all of this a little easier to take. So, the first thing that I intend on doing when I get paid is get a membership, and then officially get Landry into the Poke-R Club. It's a kit that includes chips for pokes (blood draws and IVs), as well as a Buzzy Mini Pain Relief System and distraction cards, along with some other stuff. For every ten pokes and the chips collected, he'll get a prize. 

PDSA and their ITP support page on Facebook have helped me out so much. Landry looks at the trips back and forth to Children's as fun and games because he has fun getting there and back. He's not quite four, what's not to like about train rides? He knows that something isn't quite right, but as I said earlier, ignorance is bliss, so I do the worrying for two. With PDSA, I know what I need to know to help him through all of this mess, and hopefully to the other side.

Yes, I preferred life without PDSA in it, who in my shoes wouldn't? But ITP is in our life for the time being, and since it is, I am eternally grateful that it is here.