Another child dies

Thanksgiving weekend is coming to a close and I just read about another sweet child who died from his nut allergies. He accidentally had a bite of cake that had nut residue in it, suffered three heart attacks, was put on life support- and died. One wrong bite and a child is now dead. Again.

Before Thanksgiving and really all holiday/family gatherings- people post to have a safe holiday. Inevitably someone is posting about having to skip a family gathering OR going to a family gathering but having a member of their family making fun of their child or even putting out their child's allergen purposely exclaiming, "it's dad's favorite snack, so deal." It seems that every holiday some relationships are put to the test and a child always dies. As a mom this is heart-breaking and as a food allergy mom this is terrifying.

I look at pictures of this little boy. His mom posted a family picture just hours before he died. And it can happen to anyone.

We need OIT to work. There may never be anything closer to a cure than OIT. And it is terrifying! Over here we are doing mostly okay. Coby is back at his take home dose (and hoping to be able to finally go back to the doctor this Thursday to updose). I did one more day of my 'spying' on him but still am unsure at what causes him to have his symptoms.

It seems the busier his hands are kept/the more entertained he is the less likely he is to 'swipe' at his mouth... but since he has a small cold he is wiping at his nose a lot- even hours after dosing. Today I heard whistling as he breathed and I had to comfort myself saying, "It is not wheezing- it is his nose, it's not his lungs, he's fine." Maybe all the lip swiping is a mixture of habit, some itchiness and anxiety. 

Someone in my OIT group recommended a great book for children who may be experiencing anxiety- so of course I got it for him. We did the first two chapters together. Chapter two asks him to draw something he is worried about and this is what he drew: 

"This is a picture of me dosing. I am worried that it will take longer because I must downdose."

At first he just drew a picture of "this is me dosing." When I asked him WHY that worries him- I was sure he'd say because he's scared of reacting, but instead he told me he's worried he'll have to keep downdosing and that his body won't handle it and they'll make him drop out and he doesn't want to drop out. Awwww. I reminded him (and myself) that downdosing is okay- because that helps keep his body calm and as long as we down-dose when/if necessary- we can get there. It's NOT a race.

Meanwhile we got to have some family time (even Josh was home) over Thanksgiving. For us family time is Disney time, so we started the day with Moana. 

 

(After we got home Yitz was saying how he needs to pack for his work conference- which this year would be taking place in Orlando!!! Well if you know me, you know going to Orlando without any plans to visit THE WORLD is just criminal- so I surprised Yitz with a day at Disney- and he is there right now!!! LUCKY BOY!)

But back to Thanksgiving day itself- after surprising Yitz with a trip to the world we took our annual trip to (safe) Dougie's 

and while we were there Coby decided to tell us what he is thankful for:

1. Family  2. Food   3. Drink  4. Shelter  5. OIT

And who knows- maybe next Thanksgiving we'll be able to eat where-ever we want and the world will be more opened for him. But most importantly, we do this to protect our Coby-bear. That is first and foremost in our minds. Yes we hope OIT can be life-changing, but most importantly we NEED it to be life SAVING. Right now my heart breaks for the family whose child will never experience another Thanksgiving.... Because of a nut allergy. The mom is begging people to learn and understand the seriousness of food allergies and how to respond to a reaction. She said she hopes losing her child will teach others the seriousness of it so her child will not have died in vain. She reminds the public that what you may see as 'inconvenient' or 'over-reacting' is life or death to another.

Because what are we most thankful for? Family. Your children. There is NOTHING in the world more important than our children. Hug them tight. Time is fleeting. Time is precious. Cherish the moments you have with them. Because unfortunately, you never know.

Rest in peace little Oakley...