Everything looks better after a good night’s sleep, you know?
I don’t think there’s any way I can possibly THANK YOU ALL for the outpouring of support and encouragement we received yesterday. It means the world to me. Seeing how many people are “in our corner” and praying for my son was a boost like no other.
For everyone who sent a comment on the blog, a comment on Facebook, or an email to commiserate and encourage, THANK YOU.
(And thank you to the people who didn’t tell me but who prayed for us yesterday, too!)
Today I’m feeling much better; a little time, a good night’s sleep, and knowing I’m not alone made a huge difference. I’m busy putting on my big girl panties and attempting to rally in the face of our latest setback.
Yesterday was challenging because I was in such a funk. My heart had gone out of me. We even introduced Jed to a slip ‘n slide and I could barely muster any enthusiasm for his joy and excitement. (Which, in retrospect, is SO sad – the child stripped naked and screamed with excitement as he ran through the water! How could I not think that was the cutest and funniest thing on the planet? Damn you, FPIES!)
Plus, Zac had another icky diaper, and I noticed that he has some eczema on his face and head now. Not nice.
But life does go on, regardless of our desires to wallow in misery. I have two little boys who are happy, joyful, and enthusiastic about everything, and they need a Mama who can keep up with them.
So last night we talked it over and decided to keep lamb and quinoa off the table for now, and proceed with a formula trial. The big debate was whether we would do the formula trial before I left for work or after I’d already gone.
Here’s a funny anecdote: I posted a quick survey about our quandary on the FPIES boards, giving 4 options.
- slowly trial the formula before I go to work
- let me go to work, use breast milk until it is gone and then go fully onto formula
- let me go to work, start formula right away and keep breast milk in case he reacts so Zac has something to eat until I can fly home
- call out sick for August and declare bankruptcy
13 people voted for #1…and 3 people voted for #4!
I don’t know why I found that so hysterically funny, but I did. FPIES Mama’s care about our kids more than anything else in the world, including our ability to keep a roof over our heads. “Bankruptcy? Whatev! Let’s talk food trials!”
That fact is simultaneously sad, though. Who should ever have to pick between those things?
Anyway, Darrel and I decided to slowly trial before I go to work. So once Zac gets to baseline, we’ll be giving Neocate Junior a shot. In case he has an acute reaction, I’d rather be here for it rather than being on the road.
I really hope it works for him and that my gut is proven wrong this time.
In other news, Jed is now 3 years old and of an age to head off to pre-school. There is a local moms group that does a pre-school co-op where the moms are the teachers and rotate responsibilities. That sounded like the best option for us; thanks to Jed’s food allergies, our considerable distance from all other pre-school programs, and our finances, regular pre-school didn’t sound like a good option for us.
So I sent an email asking how they handle food allergies at the co-op, since part of the day is designated for “snacks”. The response?
“I know last time we had a child who had a certain food allergy, so we try not to give that kid that he/she is allergic to. Our snack normally consists of cheese, crackers, fruits and parents bring their own drink for their kids and sometimes some mom would bring muffins or any goodies once in a while.”
Grammatical errors aside, as Jed’s Mama I read that going “Dairy…Egg…Fructose…more dairy…more egg…random unknown allergens and probably GMO’s…um, yeah, not gonna happen.”
And “try” to not give that food to the kid? TRY? TRY!!???
Trying isn’t good enough when my sons life is in question, folks! I know I will be there, as all moms have to participate. However, I’ll be wrangling Zac in a baby carrier and trying to fulfill my duties as teacher that day, and keeping an eagle-eye on Jed for snack sharing would be terribly hard under those conditions.
So I guess Jed gets to stay home for pre-school. He already knows a lot of his shapes, recognizes about half his letters, can count to ten, and knows how to “match” things by drawing a line between them. That’s with me not even trying to teach him anything yet! (Though I’m sure speech therapy helped with that quite a bit.)
Still, I think I can handle homeschooling pre-school. Anyone have any resources/tips/tricks you could pass along? Thanksomuch!
Oh, and I’m thinking of starting a betting pool on which food trigger Zac’s FPIES reaction: lamb meat, quinoa, or both. Five bucks for an entry, and we’ll split the pot 50/50 with the winner! What do you think? (Only slightly joking here, people!)
Well, maybe with humor and support, we’ll survive the latest volley of FPIES attacks and still win the war. It’s not over yet, FPIES!