At Coby's last OIT appointment our doctor told us he was comfortable in Coby skipping dosing once every week! That was amazing to hear- but in truth, I fought it.
I thought, "but if he skips, and then Coby gets sick and has to skip, then he'd be skipping too many days and he'd lose all his desensitization so we can't actually start to skip one day a week 'just because' unless he's allowed to start skipping two."
After many weeks of refusing to skip dosing a single time 'just because', I had a lightbulb moment.
"Hey Stace, what are you doing? If you don't challenge his body and make sure it is actually capable of skipping a day every single week and popping right back to his regular dose the following day, how will you ever make any further progress? How do you expect the doctor to ever give permission to possibly skip 2 days a week or even more, if you won't even skip a single day? Trust the doctor. Trust the process. You gotta give it a go."
So I dove in and we began skipping dosing once every week. We would choose the day that the skipping of dosing would give him the most freedom- such as on vacation- if we wanted or needed to be active all day, we'd simply skip that day that week. If there was no day like that, we just let Coby pick any random day he wanted to skip (as long as it wasn't a day that was close to the skipped day of the prior week-- like if he skipped Friday, he shouldn't skip Sunday just two days later)
Coby all in all had been doing great, though he did have a couple of reactions over the last couple of months.
One was a random middle of the night reaction that scared the bejeebers out of me. That day Coby dosed as usual, and 7 hours later Yitz was getting ready to go to bed and woke me up. "Stacey, Coby woke up complaining about being all itchy and he can't stop coughing. I gave him benadryl and he went back to bed." I turned on the baby monitor but was a nervous wreck. I don't think we had ever been able to give him JUST benadryl to completely stop a reaction once there was coughing involved. I started thinking of those people who died from an anaphylactic reaction in their sleep and was terrified each time I went to check on Coby throughout the night. Thank G-d all was okay. But it was not a fun night. We remain clueless as to why he even reacted in the first place.
The other was just before we were about to leave to Brooklyn for my in laws 50th anniversary celebration. He began reacting at home. We needed both benadryl and steroids to calm down the reaction. Since it was late and he was heavily medicated he was a bit out of it by the timewe got the restaurant, but thank G-d the reaction didn't progress. AND he was able to eat in that restaurant since he OITd, otherwise he wouldn't have been able to. (If you are wondering why we didn't plan to simply just skip dosing him that particular day that week, it is because 3 days later we were headed to Costa Rica and NEEDED to skip dosing him on that travel day. We couldn't risk a reaction happening mid air and by the time we got to Costa Rica it would have been too late to dose him... That flight ended up having to make an emergency landing due to a sick passenger but that's a whole separate story)
In Costa Rica he was able to participate in fun activities all over the country. He ziplined, rappelled through waterfalls, hiked, snorkeled, ATVd, took boat rides. He had the time of his life.
We traveled all over the country and after booking our flights and all our hotels and activities, we learned that there was NO kosher food anywhere near we were staying--- not even drinks or bread! We packed a suitcase and small cooler full of kosher food- cereal, breads, granola bars, deli, cheese, pasta and prayed CUSTOMS wouldn't confiscate it. We read lots of articles that it's a complete crap shoot- some people get through and other people have every single item confiscated. We tried to mentally prepare ourselves for that telling each other we would just live on fruit, but at the moment of truth CUSTOMS let us through (and yes we declared our food on the customs form), but after 8 days of eating blechy suitcase food we were ready for real food, and in San Jose they did have a chabad and kosher restaurant that thanks to OIT we were able to eat!
It was an amazing vacation to celebrate Josh & Mikey's college and high school graduation and try to make the most of our time with Mikey before he left to Israel for the year.
But just when Coby thought we were headed back to NJ- we surprised him with a quick trip to Disney.
Disney had already put up their Halloween decorations even though it was still only August and there was candy being given out everywhere. (To most people it was trick or treating- to us, 'free chocolate!). None of it was 'safe'- but we no longer need to worry about that! And so we collected over TEN POUNDS OF CHOCOLATE. Yep, Mikey weighed the bags on our luggage scale. It was over 10 pounds!
My silly Coby doesn't really like chocolate, so he barely ate any of it--- but still. We didn't have to worry about him being exposed to any of these 'deadly darts' floating through the Magic Kingdom since he was protected, and he was able to taste some when he wanted to. A couple of things Coby eagerly agreed to eat that he otherwise wouldn't have been able to was of course ice-cream.
And while this next picture is just from the new Stew Leonard's that opened up in Paramus- it fits the ice-cream theme. Kosher not safe Soft serve in the store! Thanks OIT!
So it has been great. Here we are mid October with Simchat Torah approaching. We had decided Coby's skip day this week would be Monday/Simchat Torah so he wouldn't have to worry about a delayed reaction from dancing. We knew we no longer to fear this holiday but instead he could be just one of the kids collecting a bunch of candy and dancing around with the Torahs. He'd also be able to partake in the full meal the following morning with no concerns of a reaction either thank you OIT!!!
But then it happened.
This past week we skipped Monday because of the Sukkah hop- we didn't want to have to worry about a reaction when he was running around with kids. (And once again thanks to OIT he was able to participate in the sukkah hop and eat foods at other people's houses--- oh and while on the subject of other people's houses, we were also able to go on another shabbaton with good friends from college that we hadn't done... SINCE COBY WAS FOUR MONTHS OLD. It was so nice to be able to do that again. Thanks OIT!)
Where was I?
Oh right.
Back to 'but then it happened.'
I started to feel crummy. I didn't have fever but my throat felt like it was on fire. I felt like there was broken shards of glass covered in hot lava going down my throat every single time I swallowed. That was my only symptom but it was miserable. I couldn't sleep through that pain and didn't know what was happening since I didn't have any fever- it didn't make sense.
After three days of this hell I gave in and went to the doctor and just by looking at my throat she exclaimed. "YEOWCH! That is bad! You definitely have strep."
Strep? I haven't had that in THIRTY years! I don't even have fever. So weird. Thank G-d for antibiotics. What a difference they make!
She did warn us, "Be careful for others who live in your home. If they get sick in the coming days, assume it is strep."
NO! Please Coby can't get sick. That complicates OIT since you can't dose when sick. And he has Simchat Torah coming. He can't get sick. It becomes so complicated for him to be sick.
But he hasn't been sick in since March 2018 (with strep), so really I know we're 'due'.
Friday I am about to dose him and he says, "mom I feel weird. I don't think I should dose."
"What do you mean weird?"
"I can't explain it."
He did sound a little congested but I couldn't skip him completely- after all he had already skipped that week just 4 days before on our 'skip day'.
I decided to down-dose him from 8 to 6 peanuts.
An hour later he had 102. And yep, shabbos had just begun a few minutes earlier so we are stuck. (WHY DOES THIS TYPE OF STUFF ALWAYS SEEM TO HAPPEN ON FRIDAYS?!!!)
CRAP!
Thank G-d, Thank G-d, Thank G-d, I didn't give him his full dose and he had ABSOLUTELY NO REACTION last night.
We really dodged a bullet.
It could have been real bad.
Today he woke up with 104 and complaining about his throat. There was no way I could dose him today.
We also knew we couldn't wait til Sunday to see the doctor. We were worried how high his fever could spike during the night and we needed to get him on antibiotics TONIGHT. The longer the illness the more complicated it becomes to get him back to his maintenance dose. And safely. We also wanted him to be able to participate in Simchat Torah festivities.
So to PM Pediatrics we went.
Ironically HIS strep test came back NEGATIVE!
Which is a 'crap' in my book.
That means we need to wait for this virus to run its course AND it means he can still catch my strep.
Here's hoping he it's a fast one and he'll be able to participate in some Simchat Torah festivities and safely get back up to his dosing regimen.
Sigh.
But hey, it was a 19 month run for Coby. Fingers crossed for at least another nice 19 month illness free run for our Cobester.
Feel better sweets!
After many weeks of refusing to skip dosing a single time 'just because', I had a lightbulb moment.
"Hey Stace, what are you doing? If you don't challenge his body and make sure it is actually capable of skipping a day every single week and popping right back to his regular dose the following day, how will you ever make any further progress? How do you expect the doctor to ever give permission to possibly skip 2 days a week or even more, if you won't even skip a single day? Trust the doctor. Trust the process. You gotta give it a go."
So I dove in and we began skipping dosing once every week. We would choose the day that the skipping of dosing would give him the most freedom- such as on vacation- if we wanted or needed to be active all day, we'd simply skip that day that week. If there was no day like that, we just let Coby pick any random day he wanted to skip (as long as it wasn't a day that was close to the skipped day of the prior week-- like if he skipped Friday, he shouldn't skip Sunday just two days later)
Coby all in all had been doing great, though he did have a couple of reactions over the last couple of months.
One was a random middle of the night reaction that scared the bejeebers out of me. That day Coby dosed as usual, and 7 hours later Yitz was getting ready to go to bed and woke me up. "Stacey, Coby woke up complaining about being all itchy and he can't stop coughing. I gave him benadryl and he went back to bed." I turned on the baby monitor but was a nervous wreck. I don't think we had ever been able to give him JUST benadryl to completely stop a reaction once there was coughing involved. I started thinking of those people who died from an anaphylactic reaction in their sleep and was terrified each time I went to check on Coby throughout the night. Thank G-d all was okay. But it was not a fun night. We remain clueless as to why he even reacted in the first place.
The other was just before we were about to leave to Brooklyn for my in laws 50th anniversary celebration. He began reacting at home. We needed both benadryl and steroids to calm down the reaction. Since it was late and he was heavily medicated he was a bit out of it by the timewe got the restaurant, but thank G-d the reaction didn't progress. AND he was able to eat in that restaurant since he OITd, otherwise he wouldn't have been able to. (If you are wondering why we didn't plan to simply just skip dosing him that particular day that week, it is because 3 days later we were headed to Costa Rica and NEEDED to skip dosing him on that travel day. We couldn't risk a reaction happening mid air and by the time we got to Costa Rica it would have been too late to dose him... That flight ended up having to make an emergency landing due to a sick passenger but that's a whole separate story)
In Costa Rica he was able to participate in fun activities all over the country. He ziplined, rappelled through waterfalls, hiked, snorkeled, ATVd, took boat rides. He had the time of his life.
 |
| PURA VIDA! |
It was an amazing vacation to celebrate Josh & Mikey's college and high school graduation and try to make the most of our time with Mikey before he left to Israel for the year.
But just when Coby thought we were headed back to NJ- we surprised him with a quick trip to Disney.
 |
 |
| Part of Mikey's collection |
 |
| Ghirardelli at Disney Springs |
 |
| Mickey bars at Disney's Blizzard Beach |
And while this next picture is just from the new Stew Leonard's that opened up in Paramus- it fits the ice-cream theme. Kosher not safe Soft serve in the store! Thanks OIT!
But then it happened.
This past week we skipped Monday because of the Sukkah hop- we didn't want to have to worry about a reaction when he was running around with kids. (And once again thanks to OIT he was able to participate in the sukkah hop and eat foods at other people's houses--- oh and while on the subject of other people's houses, we were also able to go on another shabbaton with good friends from college that we hadn't done... SINCE COBY WAS FOUR MONTHS OLD. It was so nice to be able to do that again. Thanks OIT!)
Where was I?
Oh right.
Back to 'but then it happened.'
I started to feel crummy. I didn't have fever but my throat felt like it was on fire. I felt like there was broken shards of glass covered in hot lava going down my throat every single time I swallowed. That was my only symptom but it was miserable. I couldn't sleep through that pain and didn't know what was happening since I didn't have any fever- it didn't make sense.
After three days of this hell I gave in and went to the doctor and just by looking at my throat she exclaimed. "YEOWCH! That is bad! You definitely have strep."
Strep? I haven't had that in THIRTY years! I don't even have fever. So weird. Thank G-d for antibiotics. What a difference they make!
She did warn us, "Be careful for others who live in your home. If they get sick in the coming days, assume it is strep."
NO! Please Coby can't get sick. That complicates OIT since you can't dose when sick. And he has Simchat Torah coming. He can't get sick. It becomes so complicated for him to be sick.
But he hasn't been sick in since March 2018 (with strep), so really I know we're 'due'.
Friday I am about to dose him and he says, "mom I feel weird. I don't think I should dose."
"What do you mean weird?"
"I can't explain it."
He did sound a little congested but I couldn't skip him completely- after all he had already skipped that week just 4 days before on our 'skip day'.
I decided to down-dose him from 8 to 6 peanuts.
An hour later he had 102. And yep, shabbos had just begun a few minutes earlier so we are stuck. (WHY DOES THIS TYPE OF STUFF ALWAYS SEEM TO HAPPEN ON FRIDAYS?!!!)
CRAP!
Thank G-d, Thank G-d, Thank G-d, I didn't give him his full dose and he had ABSOLUTELY NO REACTION last night.
We really dodged a bullet.
It could have been real bad.
Today he woke up with 104 and complaining about his throat. There was no way I could dose him today.
We also knew we couldn't wait til Sunday to see the doctor. We were worried how high his fever could spike during the night and we needed to get him on antibiotics TONIGHT. The longer the illness the more complicated it becomes to get him back to his maintenance dose. And safely. We also wanted him to be able to participate in Simchat Torah festivities.
So to PM Pediatrics we went.
Ironically HIS strep test came back NEGATIVE!
Which is a 'crap' in my book.
That means we need to wait for this virus to run its course AND it means he can still catch my strep.
Here's hoping he it's a fast one and he'll be able to participate in some Simchat Torah festivities and safely get back up to his dosing regimen.
Sigh.
But hey, it was a 19 month run for Coby. Fingers crossed for at least another nice 19 month illness free run for our Cobester.
Feel better sweets!
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