Well, what does freedom mean to a 9 year old?
- It means having your mom basically FORCE you to get ice-cream at every ice-cream truck we happen to pass.
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| When scootering |
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| When at an Israel festival |
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| Even in front of the Washington monument |
-It also means on a day like Father's Day, ice- cream becomes the law!
-It means being able to ride on a real school-bus with his school for the first time ever with zero worries about an airborne or touch reaction and being able to march in the Israel parade.
-It means being FORCED to eat a cookie that was being handed out. He declared it as, "soooooo good!"
-It means stopping by the kosher food truck to get something- anything, just because we could.
Coby was sure he was going to HATE it--- after all what the heck is Shakshuka? He ended up devouring it!
Instead he is able to hand off his epipens to his counselor to carry around all day and get it back at the end of the day. This is the first summer his waist can actually breathe!!!
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| off to camp! Counselor (to a different division) and camper |
- It means buying way too much Entenmann's.
-It means being able to go away for the weekend eating whatever.
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| Pikesville, Maryland (you may think how could pizza be unsafe... but there are many times it is unsafe- in fact just last week I read about a couple of kids who had reactions to what they thought would be 'safe' pizza.) |
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| Teaneck, NJ |
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| Elizabeth, NJ |
Freedom is wonderful.
Freedom is a blessing.
But freedom can also be confusing.
Random reactions still do occur.
Some that are less scary like just a few bumps that we have (sorta) learned to navigate on our own.
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| Since Coby hates dosing with the pb powder, we tried having him dosing every 3-4 days with it, instead of just every 3. And at times it seemed to be working out- but other times he would end up with small hives all over as in the pic above. And so we went back to dosing with it every 3 days to help avoid those minor reactions. |
And other times it can be more scary. For example, last week after Coby dosed- we waited a full two hours before leaving the house. It was quite warm outside. He walked to our car. Then walked one block to our destination. He was barely outside and was walking at a normal pace and it was after his 2 hour rest period. Yet--- IT began. I heard him clearing his throat a few times. Right away, in that initial moment of that throat clearing sound- I just KNEW...
Then he began rubbing at his eyes.
Then I noticed a couple of bumps on his ear. One inside and one on the top.
A bunch of bumps on the back of his neck.
He started wiping at his nose and being all stuffy and I noticed he had small hives all over his torso.
Anaphylaxis?
We jetted home with me sitting in the back seat with Coby to keep an eye on him and paged the doctor. The dr. had us treat him with benadryl followed by steroids and keep him up for quite a bit after his bedtime to keep watch. (The doctor told us he is concerned that Coby randomly still has problems with the powder. Coby has his next appointment for more blood and skin testing in a bit over a month and to discuss all with the doctor.) Thank G-d it resolved itself. But what the heck? Was the car not cooled off enough? Why would just a couple of minutes in the heat outside his 2 hour rest period do this? Was it because it was heat plus a powder dosing day? Should I have even waited and called the doctor or should I have just epiid him- after all it was a multi system reaction. I didn't epi him and it worked out, but I don't know- isn't the rule multi system equals epi--- I remain confused. Despite it all working out that evening, did I do it all wrong?
Stressful times do occur. And at times it can be a balancing act together with a difficult math equation. After all, it is summer and we want to be able to go out and enjoy and be free--- but the timing of his dosing made more complicated with wanting to go out and having to deal with the heat is stressful. Just yesterday we wanted to go see a show but the timing wasn't working out. I just couldn't figure out how to make it work. He got home from camp 4:30 still needing to shower. Then he would need to wait 45 minutes before dosing and that would have meant we would be heading out less than an hour after dosing, and while it was a nice day was it still too warm? Unlike the other day when he was outside for just a couple of minutes, this time he would be outside for hours.
So what did we end up doing?
We exercised our rare, 'skip your dosing today' card, and did just that. We didn't dose him at all. We went to the show. He was able to run around like a normal kid before it began. We didn't have to worry about a reaction. We were able to relax and enjoy.
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| Fiddler on the Roof |
BUT.... we will have this issue all over again tomorrow.
we want to get in one set of fireworks and music in before the 3 weeks begin--- and that is tomorrow. I cannot again exercise his 'skip today's dosing' card just 2 days after using it, (Plus in a couple of weeks we will have to do that again when he goes on his camp overnight) so I am a bit stressed about what will happen tomorrow. So far all we figured out is we will pick him up from camp a half hour earlier than he usually leaves to buy us some time. We should have about 2 and a half hours at home before needing to leave for the music and fireworks. BUT we can't allow Coby to run around with a ball and frisbee like he usually did. Even though it will be past his 2 hour mark, I'm a bit traumatized from what happened last week--- that the warmth plus exercise plus the dosing may be too much for his body to handle.
Sometimes maintenance can be quite the balancing act.
So tomorrow we will (try to) enjoy, but will also be ready to pounce just in case...
I do know one thing for sure though--- when we see that ice-cream truck, Coby will just HAVE TO get some. It's not like we even have a choice.
After all, it's the post OIT law!
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