HAPPY UP-DOSE DAY- 6 PEANUTS BABY!!!

This is probably going to be one of my shortest posts ever. Picked him up from camp a bit early. Showered. Carbed up in the car. Went to his spot.

CRUSH HOUR- about to eat 6 peanuts!!!

They checked him pre-dose, cleared him to dose. He hemmed and hawed for 2-3 minutes before chugging it down.

6 peanuts down the hatch!

The hour passed by completely uneventfully. We were the last patient there by a good half hour. It was creepily quiet when we were there and I had guilt that they were all still there because of us. I actually even apologized to the doctor and she assured me it was fine and that they would have still been there anyway. The doctor then re-checked him. We asked our questions and we left!

Yes, yes we all know Coby has a tendency for delayed reactions--- but so far so good!

AND IF ALL IS WELL JUST 3 OR 4 MORE UP-DOSES TIL THE FINAL UP-DOSE AND GRADUATION DAY!!!!

HOLY CRAP IT'S HAPPENING!!!

And you know what--- part of this journey has been a blessing in disguise. Yes, you read that right- a blessing! I know, believe me I know how much this has sucked throughout the years and how scary this has gotten at times, and I know that he will continue to have to fight the good fight for the rest of forever...

but still---

This process has taught Coby such amazing things. It has created such an optimism in him and such a zest in life that can't be matched. He has such optimism and stamina and endurance and hope and belief and unbelievable characteristics that I very rarely see in others. I can learn a lot from him.

For example right now as he continues his rest period and is playing a game on his phone--- the game got a bit rough and at first he grumbled but then he brainstormed and figured out what to do & literally said out loud to his game, "I NEVER GIVE UP!" I hope this message has really become ingrained in him and will serve him well for the rest of his life. After all it is one's belief in himself that is more important than anyone else's.

He blows me away every single day.

And this brings you to the end of my regular blog post...
________________________________________________________________

But for those who were asking me questions and wondering what his restrictions are in maintenance, I got some of my questions answered:

1. In regards to eating on a plane. She said he should be fine to eat any meals that may be cross contaminated but to never ever eat anything with actual peanuts on an airplane 30,000 miles up. NEVER EVER.

2. We should be able to begin tapering off the applesauce but don't do it right away and honestly, applesauce is healthy anyway, so why not? Coby should be able to touch peanut by then but we shouldn't jump on day one and start testing him on tolerance of everything in every manner.

3. The 2 hour rest period after his dose will remain indefinitely as well as the no showering or bathing 2 hours after dosing.

4. He will still need to self carry his epipens. She stressed that "he is STILL allergic and a reaction can STILL happen and he should always be able to respond in seconds." (I had hoped he could leave epipen with nurse or in his backpack or with a counselor like every other kid, since wearing that bulky belt is annoying, oh well, can't have everything.)

5. He should remain on probiotics forever.

6. They will give us equivalences to everything at graduation (including planters peanuts--- woot woot, cannot wait to when I don't have to shell peanuts anymore!). Whenever he eats anything cross contaminated it will require NO rest period at all. His daily dose will be 12 peanuts and he will be able to free eat whatever else he likes. We do not have to grill a waiter at a restaurant and when shopping we will not need to scrutinize labels. Cross contamination will mean NOTHING!!! But if he were to eat anything with actual peanuts that is equal to less than 6 peanuts (half his maintenance dose) it will require NO rest period at all. Anything more will still require the 2 hour rest period (though I cannot imagine him seeking to eat anything with peanuts other than his actual dose anyway, but you never know when that may change.)

7. He will have to keep his environmental allergies under control from here on out. Usually by this time of year pollen is no longer an issue but for some reason it still is a problem out there these days and so he is still on his zyrtec and flonaze. She hopes he can get off of them by the end of July and then go back on it before next spring. We had hoped to do SLIT for that (which I spoke about in a  prior post) but we learned not many places offer SLIT for his specific environmental allergies and those that do can be hours away, cost thousands and take 3-5 years to complete. If it's too complicated to figure out oral meds and keep it his allergies under control, we may have to go the shots route. (sigh)

8. While it is risky to take Motrin while doing OIT (it can cause a reaction), once he graduates it should be okay for him to take it again when he gets sick. They will tell me the protocol for what to do in regards to dosing when he does get sick in the future (since fever plus dose can equal bad reaction)- it would basically mean skipping doses or halving doses and then building back up to his maintenance dose.

And that is all the info I currently have. I'm sure I'll think up many more questions before graduation date which may be just a few weeks away!!!! THIS IS INSANE!!!!

Ahhhhh SUMMERTIME- (this started and ended off about the peace OIT has brought so far, but ended up mostly being about yagilu....)

Holy moly I didn't blog in an entire week. WOOT WOOT! Yay for a boring dosing week!!!!

We had to shuffle up Coby's dosing schedule a bit in the summer, but all went well. He gets home from camp about 4:30, and jumps into the shower. We then have to wait 45 minutes to dose him so he's been dosing about an hour later than he did during the school year, but thank G-d it basically has been going smoothly.

Sure he's a bit congested these days, but that's what you get when it's only 72 degrees outside and you really want to go swimming with camp anyway in a non-heated pool! Just hope it's minimal enough that he can continue to up-dose.

in the camp pool

While Coby was not given any new freedoms since two up-doses ago, I was given a gift from OIT... a sense of peace.

Last year I was a nervous wreck sending Coby off to camp. Yes it is a nut free camp, but he would be riding on a school bus every single day. (to the two trips each week plus to the swim club the other three days). While he self carries his epipen, water activities made me nervous because---

He has to take off that epibelt and give it to his counselor.

What if the counselor forgets it on the hot bus (which would kill the epi)

What if the counselor leaves it in direct sunlight (can kill the epi)

What if the counselor with Coby's epi-belt is somewhere not near Coby and Coby has a reaction?

What if the counselor forgets the epi-belt at the swim club and Coby is epi-less...

One of last year's trips that brought me the hugest anxiety was when he went to a waterpark. We even bought a  water-proof 'purse' for the epi-belt that we thought would enable Coby to wear the epi-belt in the water but when we did our preliminary research, the water-park told us he would NOT be able to wear anything in the water--- it could get caught on the slides and Coby could end up with a serious injury. They suggested that he leave his epipen in the locker.

THE HOT LOCKER?! (remember if it needs to be kept room temperature, extreme heats can kill the meds)

AINT HAPPENING.

So his counselor would have his epi-belt while Coby was in the water...

BUT

It's a freakin' waterpark and kids were all over the place- some in the pool, some in the splashdown area, some in the lazy river, others on slides--- the counselor would not be able to be 

near Coby at all times. 

And true while the kids would not be eating while going down the lazy river, they had eaten lunch shortly before the water-park, what if Coby were to have a delayed reaction to something that was inadvertently cross-contaminated

OR

what if Coby swallowed some water and had a reaction from that.

"HUH" you may ask. 

"WATER?" 

Yep. Crazy weird, but kids have had reactions in public pools from getting water in their mouth.... because other kids get water in their mouth. It happens. So if someone had eaten peanut butter even 4 hours earlier and got some pool water in their mouth and spit it back out, (which most do since they don't swallow pool water), the friggin' contaminated pool water could cause a reaction.

So yeah, I was a hot mess during that particular trip last year.

That same trip was two days ago and I barely felt any nerves about it!!!!

To be fair, my mind was sort of on other things that morning since we sent Mikey off to his wilderness camp that morning and I had a bit of anxiety about that (while it is his favorite place in the world, 5 of the past 6 summers one of my kids ended up with a serious injury or illness at that place so it is quite a bit nerve-wracking for me to send them there. 

To be fair, it is an AMAZING experience. Josh and Mikey loved it. Building shelter, making fires, navigating by the stars, living in the wilderness. Cultivating friendships like no others. Building unbreakable bonds. Team building exercises. Watching out for one another. It was an unbelievable experience for them. It changed them. They became independent and resourceful and responsible and it had such positive and lasting effects on them that they could never have received anywhere else... but as a parent, getting through that month knowing your kid is out in the wilderness- is scary! Even when all does go as well as can be expected, they encounter snakes and bears and ARGH....)

For those of you that are curious as to the big things that happened those years in a 'nut' shell (pun since this blog IS supposed to be about Coby)

1. Josh year one- kids were hoisting huge logs to build shelters and such. Rope snapped, big heavy log came falling towards the ground... and on to Josh. His shoulder and arm got pretty messed up. Trip to hospital. He was unable to carry his heavy backpack or participate in the 3 day hike he had so been looking forward to. I didn't get any pictures of that injury (shocker) since I wasn't there, but here's a pic from that year. (In future years I do have some pix of injuries because other kids sent me pix)

pretty

2. Year two- (he repeated year one since he missed out on the three day hike and couldn't be promoted to the year two without it)  The day before leaving to camp, Josh jumped up slammed his head. Dizzy, nauseaus, dilated eyes. Trip to the ER for MRI. Slight brain injury.  He had to take it easy for a while while there.

great timing Josh...

on a hike

Why yes, that is a bear going through their stuff (and they were taught what to do if they were to come upon a black or brown bear)

pretty

3. Year three- besides his more major injury he also ended up breaking his finger the day before leaving to camp and no orthopedists were available so we had to take him to the hospital for x-rays and to be splinted up) Again great timing... On the very last day of camp Josh had intense stomach pains and couldn't move or walk (he had to be carried to the infirmary). They could not in good faith put him on a two hour bus ride home and instead rushed him to the hospital. He needed a few hours of meds and fluids. Apparently going from Tisha B'av to a multi day hike just a few hours after the fast ended and not re-hydrating enough can do that to a person....

            broken finger....                                          where he lived when not hiking...

ready for the 3 day hike

pretty

last day of camp instead of coming home

4. Year four- his more minor injury that summer was when he was trying to scale a cliff with a slackline and fell off and tripped and hurt his elbow...

....but that was nothing compared to what was coming....

Let me just add a few pictures of the funner parts of that summer.

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Okay---- and now on to the scariest thing that ever happened to us in regards to Josh.... They were on a 7 day bushwack through the forest. Josh heard a snap and froze. A huge log from a tree had snapped and came crashing down and fell on Josh. Josh passed out. When he came to, he thought he was okay and continued hiking but his body started doing weird things like going from boiling hot to freezing cold to trembling to feeling like electric shocks were going through him. (Apparently his body was going into shock.)

There was no cell service to call for help.

Kids took turns carrying him (one of the counselors was an EMT). They set up camp for the night keeping watch on Josh and waking him through the night to make sure he's 'okay'. He couldn't get up to even pee. Apparently he was filling up entire water bottles with pee every little bit of time (which is a bad sign.)

The next morning some kids continued hiking to try to get help. They found a house. No one was in it, so they broke in to use the land-line and called 911. An ambulance came!!! (BUT NOT FOR JOSH)--- apparently when the ambulance got to the nearest clearing there was some other hurt person there that they thought was Josh and they brought that person to the hospital. Meanwhile the other boys who remained by the campsite with Josh kept a fire going to send up smoke signals. A helicopter saw the smoke and tried to land.... but there was no clearing to land.

PARATROOPERS JUMPED OUT OF THE HELICOPTER TO JOSH. Their plan was to attach a stretcher to the helicopter and their plan was to have the helicopter fly that stretcher and medevac Josh on that stretcher to a hospital. BUT THERE WASNT ENOUGH CLEARANCE for the stretcher to get down or up...

The paratroopers, who were apparently all muscle men and the kids spent the next TWENTY FOUR hours walking Josh lying on that stretcher through the forest. When they finally made it to the ambulance, they were so far from a hospital that it took the ambulance another hour and a half to get to the hospital.

  

paratroopers off the helicopter 

IV inserted and Josh on stretcher for 24 hour trek out of the forest

Thank G-d they finally made it to a clearance where they could put the stretcher on the above seen truck and drive the last few miles to the ambulance

Needless to say Josh said birkat hagomel. Twice.

5. Josh's year 5 & Mikey's first year as a camper. Josh's first year as a counselor--- and NOTHING HAPPENED!!!!!! Perhaps our streak has finally been broken?! 

3 day hike!

Aw counselor and camper.

I'm on top of the world!

year 6. Mikey's second year as a camper and Josh's second year as a counselor. We had thought the big 'to do' that year was when we learned that during their 10 day hike they met upon a mad man that was chasing them with knives. But no, that was not 'all'. Mikey decided to get lyme disease and needed about 30 doctor appointments over the next month. The lyme got into his nerves and muscles and pulled his shoulder out of the socket (this took nearly 10 months to fix itself)- he needed nerve tests and a lot of PT. He also developed a heart murmur and needed to see a cardiologist. He would have dizzy spells and fall over when his legs couldn't hold him up. He would lose his vision for a few seconds at a time where everything would turn spotty or black. But for the funner times that summer: 

7. And now it is year 7. Josh's first year not going. We pre-treated all Mikey's clothes to hopefully help keep ticks away, but yeah, you could say I'm a bit nervous...

SOOOOOO--- back to Coby---- as this is his blog--- maybe all the above circling in the back of my mind as we sent Mikey off back to that camp, kept me distracted about the fact that Coby was at that water park without as easy access to his epipen as he usually has.

Maybe the fact that Josh is Coby's division head and could keep an extra (partial) eye on him gave me some peace.

But you know what, I think what gave me the most peace was knowing that Coby is now safely consuming FIVE peanuts every single day. Even if his lunch ended up being a bit cross contaminated- he should still be safe. Even if he ended up getting some contaminated water in his mouth, what were the chances that that mouthful would contain more than 5 peanuts in it.

Coby is sooooooooooooo much safer than he ever before has been.

And so I was able to chill and he had a blast!

And THAT my friends, is why we OIT.

This was the first time I myself really began to feel the pay-off of OIT. And that is priceless.

Anyway we have an up-dose appointment that begins in under an hour so I gotta get off this thing and start getting ready... 

He is going up to 6 peanuts!!!! 

We are getting sooooo close to our end goal. 

This is unreal!

UPDOSE DAY... KEEPING IT INTERESTING

So I thought and I had hoped that I'd have nothing much to say today. I thought 'eh, he's just going up by 25%, it'll be boring, I'll post a couple of pix and that is that.'

HA!

When will I learn?

Now just hoping he is okay ENOUGH.

Coby had his last day of 3rd grade today--- hello summer! That means we now have been OITing in every season! Fall, winter, spring and now summer- which will hopefully bring us to graduation!

And so Coby was super excited to be up-dosing to 5 peanuts.

Before heading out he noticed some 'white things' and asked what they are. When I told him they were packing peanuts, he asked if he could dose with those! :)

dosing with 5 packing peanuts...

SILLY KID!

While Coby was super excited to be up-dosing to 5 actual peanuts today, he was not as excited as last week's up-dose since he probably will be getting no additional clearances until graduation.   When I asked if he can eat things 'made on equipment with peanuts' she said she'd have to check with Dr. Selter. But until graduation he cannot eat things that 'may contain traces of peanuts.'

We just have to keep trekking towards graduation day!

5 peanuts, here I come!

On the way to our appointment, I had to stop the car as a deer and two of her babies crossed in front of us. "Soooo cute, but argh, I can't take a picture." My sweet little boy with his unique and amazing way of looking at the world replied, "Sure you did. You took one with your memory." Love him!

So we got there and we were put into our 'section'. He had his pre-check.... and we came close to not up-dosing at all!

WHAT?!

The nurse did Coby's peak flow check a few times. She then called in the doctor who told us she's not getting a high enough read on the peak flow to go ahead with the up-dose. 

WHAT?!

The lowest read Coby has had in the last few weeks was 180 (with some as high as 220) and now he was just managing to get it to 160. She asked me if he had been having any coughing at all, to which I replied, "No." She then told Coby to take a few minutes to rest and we'll then try one more time.

Sad, scared and nervous that they won't allow him to up-dose

Coby spent those few minutes trying to inflate those lungs of his. He also decided to drop down on one knee and ask me to marry him.

Awwww!

Jessi came back, rechecked him and Coby managed to get it up to 170. She hemmed and hawed saying this was borderline to her allowing him to go ahead and up-dose. She then listened to his lungswhich sounded perfectly clear so she okayed him to go ahead and up-dose.

PHEW!

It was go-time!

2 fingers plus 3 fingers equals 5 peanuts

down the hatch

...and the waiting began.

...and a few minutes in, I noticed a red mark on the lower corner of his right lower lip.

Enlarging this pic since it's hard to get clear pictures of things...

Freakin' crap on a stick.

As I ran out to grab Jessi I quickly flipped through the recent pix on my phone and noticed that while Coby did NOT have that mark on his lip just before coming to the appointment, it seemed he did have that mark on his lip while waiting to check his peak-flow again (feel free to scroll up to the pic and look for yourself.), which was BEFORE up-dosing.

Was it possible that since they had Coby place his lips around that cardboardy tube peak flow thing again and again again, that that could have irritated his lip?

Yep, wearing that detective cap again....

I showed Jessi the mark on Coby's lip (in real life) and then had her scroll through the earlier pictures. She agreed that the mark seemed to have been there before up-dosing and could very well be his sensitive skin response to the over-use of the tubey peak flow thing.... but a picture is not 100% clear, so "we will keep watch."

Jessi left the room and Coby turned to me and said, "I told you you were crazy." HA!

Well just because you are paraonoid, it doesn't mean they aren't after you....

(And this traumatized mom who has experienced three significant reactions so far during the OIT earned the right to be one 'paranoid person' at this point...)

And so he kept playing on his phone... and I kept watching. He had his slightly flushed cheeks that is common for him- see above pic, (occasionally they have gotten quite red which is not common for him), some eye- rubbing and some itchiness on his belly and back.

And yep, after about a half hour I noticed a few marks on his skin, some of which appeared hive-like.

Sigh.

So I scrolled through my phone at a picture Coby had asked me to take of him just before coming here, one in which he had extended his arms. I scrolled in and noticed ABSOLUTELY NO MARKS ON THAT ARM BEFORE DOSING. 

just before heading out

 And now....

one mark above the midpoint of his arm' and one about three inches below it towards the right side

eczema break out with redder one in middle

and a couple of marks on the flip side of that left arm

Other than those spots, his post up-dose check was fine. He managed to keep his peak-flow steady at 170. Chest clear. Pulse and oxygen good.

BUT...

While not all the above marks were hive-like, a couple possibly were.

Jessi told us she would like us to stay a bit longer so we can keep watch on him at their office.

After those 20 minutes nothing worsened. Yes, it didn't improve either, but it didn't worsen, so she said she was comfortable in discharging us.

She made sure we had our meds with us "just in case you need to pull over on the side of the road and handle it."  She also told me I should call her from that side of the road if need be...

Lovely...

But we both reminded each other that Coby's full body hive reactions have always been delayed by several hours so the ride home itself should be okay. She also told me that his dose 'only' went up by 25% so she is choosing to remain optimistic that he will be okay through the night and all this is just his body fighting off the up-dose in an okayISH enough way.

But yeah, obviously we will keep extra watch through the night.

Before leaving I asked her what happens after graduation in regard to appointments.

She told me after the first month he will come back for his 24 peanut challenge and then he will come back two months after that (each day dosing with 12 peanuts at home and 'free eating') and they will recheck his blood. Many people actually have a climb in IGE numbers that soon after graduation, because of the constant exposure of the allergen. It sometimes takes years before there will be a decline, IF there will be a decline. But still they check. Then several months later he will go back etc etc etc.

Happy to say Coby remained engaged the entire ride home and we did not have to pull off on that side of the road!!!

He is though, currently lying down on the couch. Lying on the couch post up-dose/tired-ness has in the past been a sign that something may happen. BUT hey, he was up til past eleven last night when we saw the first show of the summer... YES, I LET MY KID STAY UP THAT LATE FOR THE TWO SHOWS OF THE SUMMER. SUE ME. NEXT UP MARY POPPINS IN AUGUST! (and for those of you who are interested in amazing shows for just 7.00 and aren't affected by the 3 weeks- West Side Story is in July)

Legally Blonde (Mikey was at his camp orientation for Moshava Bair (for 2nd month)
and Josh was in the city seeing GROUNDHOG DAY)

So here's hoping his tiredness and those spots/hives are not a sign of what the rest of the night will bring...
And Mikey just called to ask me to pick him up from his all day orientation that was today- but I'm too nervous to leave Coby, so I sent Josh out to get him...

Hoping for an easy night and all the above was just fluke...

And now Yitz just texted me from Shop-rite telling me, "ENTENMANN'S IS HALF OFF!"

Oh crap....

HAPPINESS IS....

Coby declared his last up-dose as, "THE BEST UP-DOSE EVER!" At 4 peanuts, he was finally cleared to eat some cross contaminated items! Last week he tried crumb topped Entenmann's donuts (YUMMERS!) and Kit-Kat (YUCK!). Over the weekend, we brought him to a supermarket and what's that saying about a kid's eyes in a candy store...




















He was literally pulling boxes down off the shelf and piling them up. At one point it was stacked about seven high and reaching over his head. We compromised him down to three boxes. And in the course of the last few days he was able to try chocolate donuts and little bites too!

bliss!

Excitement!

                                     eating those long awaited for mini- bites---- finally...






I was also so excited for Coby's end of school year carnival. I even e mailed the school nurse and a head of the school to let them know that after nearly 4 years of us telling them, "no ice-cream... no Entenmann's"- he now IS allowed to have things now that are 'made in a facility with...' so yes to (most) Entenmann's and yes to some items in the ice-cream truck they bring in for school fun-days. All these years he kept having to get those boring (imho) sno-cones at those school events.

So yesterday, after the carnvial, when Coby got home from school I asked him if the school brought in the ice- cream truck again.
"Yep."

pic of actual ice-cream truck at the carnival

"Yay. What did you get?"
"I decided I had too much ice-cream lately so I went for the sno-cone."

You've got to be kidding me!

Mmmmmm, so good!

I mean, Coby did enjoy a Friendly's vanilla ice cream cone on Shabbos (wish I could have taken a video, so cute! I literally sat there for 20 minutes just watching him devour it) and on Sunday he had a mini Hagen Dazs. 

                          

So he had had ice-cream TWO times over the weekend but how could you have had 'too much ice-cream?' especially considering the carnival was a few days after his latest ice-cream. Part of me wonders if part of him was a bit too nervous to try something out of the ice cream truck without us there....

Oh well. At least he enjoyed that sno-cone...

All in all a very good week indeed! Lots of tasty treats with no reactions at all! Who could ask for anything more? 

And tomorrow we will be going to FIVE WHOLE PEANUTS!!!! YOWZERS! We are getting there.... slowly but surely, b'ah we are actually doing it!!!!!!