Tuesday, February 24, 2015

New year, new hurdles.

Happy 2015!

I think I probably qualify as worst blogger ever since my time here is few and far between, but I thought I would pop in today for a few updates.

  • B is a middle schooler now!  How did that happen?  She goes to Outdoor Ed for 5 days next month and I am freaking out.  The camp has all sorts of things in place to ensure her safety but I'm an allergy mom so I guess there's no getting around the 'what if...?' scenarios.  I would love to hear how any of you out there have handled this.  I haven't sent her off to camp or anything so I am completely out of my comfort zone. No parents allowed - this is a first for me!!
  • Last month we had a blood draw for a RAST and Component Testing.  Saw our allergist a few weeks ago.  More on that in a second.
  • B finally feels ready to take part in the SAFAR trials, so I added us to the waiting list. Hopefully we'll get a chance to participate soon.  With the latest, incredible $24 million donation, the trials are very popular. It's definitely not an easy road, so it had to be her decision.  I'm glad she's brave enough to want to attempt it now. 
  • Speaking of being brave, B's anxiety levels are really tapering off.  She panics way less now about food related activities and we find ourselves going out a bit more to dinner and she eats at friend's houses without much issue.  Sure, there are some times that we go places and she doesn't eat anything (and is no doubt starving) because it doesn't feel safe to her, but I'm proud of her for learning how to navigate the world within her comfort zone.  I know it sounds weird, but I was really proud of her when she told me that now she'll eat something before she goes out, just in case she can't find anything safe to eat at her destination.  It just shows her thinking about this now - planning for the unexpected and still going somewhere that might not offer a safe choice - does that make sense to you guys?
  • I've been avoiding Facebook lately - does anyone else find it a HUGE time suck and anxiety causing, inferiority complex building, site from hell? All joking aside, I feel way less stressed now that I only go on occasionally (as in 3 times since the beginning of the year).  I am, however, on Instagram.  Follow me there if you'd like!
  • This latest discovery isn't helping my mood.  
So, here's our news for the RAST, Component and Skin Testing.

B is still allergic so we wont be changing the way we do anything around here.  So there's that.


Her negative RAST has now turned into a positive one (in the 'high' level) and her Component Testing showed her in the reactive range for ara h1 and ara h2 (see the chart on this page to see what that means).  Rats.  Throw in a nice big positive skin test and we stay in the land of the allergic.  So, when we saw the allergist, he strongly recommended the clinical trials at Stanford.

And I think that's about it.  I've been working, crafting (proof is on Instagram), decorating my new place, and still seeing the caddy.  Life's good.  Hope it's the same for you.

Stay safe out there.

xo G


Alison St. Sure said...

I was JUST wondering about you and your blog. I love to see these updates and I am right there with you:
My 10 yr old goes to outdoor ed in April. Have spoken with the foodservice manager -- I will be sending a lot of food.
We are not ready for the Stanford trial yet... so much anxiety going on here since she had a reaction requiring Epi in December. I will be so interested to hear how it goes if you get in.
Love the updates!

Gab said...

Hi Alison - let's plan another dinner at Terrapin. I'd love to catch up!! xo

ChupieandJ'smama (Janeen) said...

I'm glad you checked in!

I do agree with you about Facebook. I need to wean myself off of it. But I get so much great food allergy info. Maybe I just need to unfriend everyone but my food allergy friends :)

I'm glad that you and B are well. Hugs!!