WOOT, WOOT!
Well mostly...
This obviously was a scary week since he's been eating actual (half a) peanut and I was warned that sometimes an up-dose can go okay at the doctor's, but a few days into home-dosing the kid can start reacting. That had me worried....
...but fingers crossed- nothing, nada, zilch!
Part of it could be that technically the last few weeks Coby had already been eating MORE than half a peanut (in flour form) so his body may be used to this level already- but it is CRAZY watching him toss that (half a) peanut back, and other than his cute little facial grimaces at the taste, that is it!
So in the dosing moment (couple of hours)- nothing!!! How awesome is that!
...Of course that doesn't mean that 'behind the scenes' my mind is blank and calm too. Far from it.
You see the last bit of time have had really high pollen counts. Coby has been on allergy medicines from nearly the beginning to help deal with that, BUT... dosing together with fighting off those environmental allergies can 'tip the allergy bucket'.
So we have been keeping Coby inside. A LOT. We had hoped to go hiking this past Sunday but when reading the pollen forecast we knew that would be a very bad idea. We took him to Urban Air instead and let him get all that cooped up energy out. (And obviously we timed it to be done well before dosing time since he can't have exercised within about 45 minutes of dosing)
So yeah, we have basically been keeping him inside, but I didn't want him to have to miss recess at school, so I have been letting him go outside for recess...
BUT- As soon as he comes home he jumps into the shower (to get the pollen out of his shaggy hair). All his clothes, jacket included, get tossed into the washing machine.
BUT- one can't have bathed within x amount of minutes of dosing because if the body temperature is elevated it can cause a reaction... so we've been doing fast 3 minute lukewarm showers and then he'd carb up and dose.
BUT- he needs to have dosed by a certain time to insure I would have the first hour of observation time done before jumping back into the car to do the next carpool run.
AND OF COURSE- traffic has been crazy this week with the construction they are doing on the main road here, so instead of a 50 minute round trip commute, it has been taken me an hour and fifteen minutes--- making NONE OF THE TIMING WORK OUT.
Stress for Stacey, but hidden well(ish), so Calmness for Coby.
SO- I switched around carpool days this week of construction, so while carpool will take longer I am only doing one carpool run that day instead of my regular two, so if Coby needs to dose a bit late due to shower and traffic I don't need to worry about getting him back into the car before having the first hour of observation under our belt.
HOWEVER--- on Thursdays I will not have time for him to shower before heading out to Suffern, and up-dosing when pollen counts are high without the ability to wash it out is quite scary. So we called his school and on Thursdays he will not be participating in outdoor recess to maximize his chances for a successful up-dose.
EXHALE.
Trying to keep his life as normal as possible while at the same time keeping him as safe as possible during his treatment (and forward) can be quite the balancing act.
So yes, it may have been a boring week as far as dosing is concerned but there is always A LOT of background 'stuff' we need to juggle to help insure that 'boredom'.
All the other hours of the day leading up to pre-dosing regimen gets to be normal (ish---- pollen be damned!)
Yesterday I got to visit Coby in school for his daglanut performance for Yom Haatzmaut.
When he got home later in the day he told me about all the fun stuff they did during the rest of the Chagigah and how at the end of the day the school gave out blue and white ice cream.
BUT
Coby did not get to have the ice-cream. Obviously the school will not give out ice cream if it had nuts listed in the ingredients, but since ice-cream facilities can be one of those danger-mines for those with allergies the kids with allergies are given ices instead.
"The ices were good mom, but that ice-cream looked delicious," he whimpered to me.
"Coby, once you are done with OIT you will be able to have that ice-cream too."
And so, he's already looking forward to next Yom Haatzmaut so he can have a taste as well.
While I say to him that soon he'll be able to have the ice-cream too, and I mean it, I still wonder- how I will be able to actually let go once (IYH) he graduates from this treatment.
For all these years I worked HARD to figure out how to keep him safe. I worked through my own fear and sadness. I dealt with those who just 'didn't get it' all the while trying to teach him how to take his allergy seriously without giving him anxiety all while keeping his life normal with a smile on my face despite the fear that runs through me every time he is anywhere other than home.
How's that for a run-on sentence?
Well it's a run-on sentence for a run-on life.
It is emotionally draining.
BUT before OIT I had gotten to the place where I was confident (enough) of my knowledge and ability to keep our life 'normal.'
We've navigated our way through it. He didn't live in a complete bubble. I mean the kid has been to school, camp, camping, vacations. He's been to disneyworld several times, Disneyland, Israel, Canada, Vegas, the Grand Canyon, California, Maine, New Hampshire, Vermont, Pennsylvania, Virginia etc etc etc. Yes, it took A LOT of leg work and planning, but we were able to do it. Yes we may have been traveling with a pile of heavy rocks on our shoulders as we did it in fear, but we still did it...
So shouldn't we just keep on doing what has worked so far?
No. Because the key words are 'so far'. It is not IF he will have another bad reaction, but WHEN. We need to try to change that fate.
It is easier when they are younger. As he gets older and I need to let go more and more, it will become more difficult. So while we may have been comfortable (ish) enough in the way we lived our life with allergies, we need to step out of this 'comfort zone of sorts' and do.... something.
I just read about another food allergy death. An Israeli man on his way home from his honeymoon. Fatal anaphylaxis 35,000 feet up in the air.
http://www.israelnationalnews.com/News/News.aspx/229028
Another tragedy.
How could I NOT do everything in my power to prevent that from happening to my child?
We are given this opportunity, we need to take it.
BUT- once this is over will I really be able to take him for donuts and ice-cream. Will I really be able to go shopping without reading labels? Will I really be able to trust that he is 'okay'?
I have held onto this life and this shield for so long and in just a few months I'm going to be told to let it go?
What if I let down my guard and something happens? Did I make the right decision? If my fears can come true with or without OIT is OIT worth it?
I need to believe it is....
IN LIFE YOU DON'T REGRET THE THINGS YOU DO, YOU REGRET THE THINGS YOU DON'T.
Each time I see him eat a peanut and nothing happens, a bit more faith is built up. Believing is seeing. How could I NOT believe in it, when I keep seeing it?
So yes, while I am still scared at what is to come and how we will invent our new normal. OIT is so very worth it.
By doing OIT no one else will be able to hurt my child with this--- those people who don't understand. And don't believe. And don't care- will no longer have the power to hurt my child. We are taking that power away from them. If they screw up, he will not pay with his life (b'ah).
THAT together with giving him a NORMAL life back--- how could that NOT be worth it?
Will I have to navigate my own fears and my own insecurities through this new normal? Yes. But that will be behind the scenes (I hope).
As far as Coby knows, the world will be reopened to him. And IYH next year, next Yom Haatzmaut, when the school brings in ice-cream, and NEXT Lag Baomer and end of year carnival (not yet this one), when they bring in that ice-cream truck..... there will be one (or several!!!) written with Coby's name on it. His eyes can grow as wide as saucers because nobody will say NO to him again. He is taking his power back.
HE has the power to change his life. And my brave 8 year old is doing just that. Every single day.
20 appointments down.
11 more to go.
Tomorrow--- he is taking on an entire peanut!
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