Thursday, June 26, 2014

Hawaii and an updose

The month of June has passed all too quickly and I am surprised to see that July is already here. Yikes! I guess taking a week long tropical vacation will suck up the time like that.

The Beach at the Condo
What an amazing vacation that OIT allowed us to have. On more than one occasion I stared at my beautiful family and said a little thank you as I realized that a year ago we would not have been able to comfortably do half of the things we did on our vacation. Here is a quick recap of some of the amazing things that desensitizing Big Monkey allowed us to do stress free.

The first trip to shaved ice (yes, there was more than one visit)
I spoke to Dr. R at our last appointment and made sure that we could stay on the same dose for 3 weeks. That meant we had already been on the dose for a week and a half before our flight to Hawaii and would not updose while away. I might have been comfortable updosing in a bustling city with several nearby hospital choices; however, I was not about to updose on a small island with what, 1 maybe 2 smaller hospitals? No, thank you. Yes, this means I scoped out the hospitals, their locations, their services, and their yelp reviews all BEFORE I booked our vacation. 

We arrived at the airport 2 hours before our morning flight thinking that would be plenty of time to drop off checked luggage, get through security, and reach our gate in time to get our seat assignments before boarding. Well, it was BARELY enough time as we arrived to our gate just 2 minutes before boarding began. No time to get bored, but I was sweating bullets. You would think that the slowest point would have been getting 2 kids, 1 husband, 2 car seats, 3 carry ons, one bag of liquid medications, and 1 anaphylactic kit complete with 6 epi-pens that need to be hand checked rather than x-rayed (which also leads to a pat down for the passenger requesting the item be hand checked - me) through security. However, it was actually checking in luggage that took FOREVER! This seasoned traveling mama (I usually travel alone with the boys) got us all through security in about 5 minutes. And for those of you wondering if you can fly with insane amounts of liquid medication, the answer is yes. I carried on EVERY ounce of medication we needed for the week plus backup medication in case we needed to refill our anaphylactic kit. I also needed to carry an ice pack to keep one of the medicines cold. As long as it is frozen solid and you declare it to TSA, you can take it through.

Doctor's appointments and airplanes are the times I allow the boys unlimited access to Ipads and movies
Food allergic individuals often inform the passengers in the surrounding rows of their food allergy and ask if they can refrain from eating their specific allergen. I felt that this was no longer necessary for us since Big Monkey eats over a peanut a day now. Even so, our buffer zone ended up being fantastic. There was no one behind us and two of the people in the row in front of us were also peanut allergic. Score for one more thing to not stress about! Of course, I did watch the guy one row up diagonal from us (and behind the husband) open a bag of trail mix, dump it in his hand, eat it, brush his hands off, then grab the hand rest to get up to use the restroom. Reminded me why I still Clorox wipe the plane surfaces and was one of those moments I was thankful for OIT.
We're here! Yay, fish tacos!
We landed uneventfully and set off on our adventure. We stayed in an awesome condo community on north Ka'anapali Beach, Honua Kai. I would recommend it to anyone looking for a more home-like place to stay on vacation. The mountain view room was as enjoyable as any ocean view room to be honest. There is something dreamy about finishing almost every day with a gorgeous rainbow.

From our balcony
We ate out, a lot. A lot more than we usually do at home, and it didn't require phone calls ahead of time or pre-planning. We just walked around, looked at menus, and picked places. We still informed our servers of his peanut allergy so they could take the appropriate precautions, but I didn't have to worry about cross contamination and/or carelessness in the kitchen. Although, I must note, most of the places we ate handled my son's peanut allergy with a professionalism that I have never encountered at any restaurant on the mainland outside of Disney. In fact, our server at one restaurant came back to our table to let us know that she spoke to the kitchen manager about the allergy and that he was now aware and would handle our food appropriately. Now, who knows what that really means exactly, but it was far more attention that I am used to. We ate the best pulled pork sandwiches, fish tacos, fish and chips, and even Hula Pie (see photo - think GIANT slice of whipped macadmaia nut ice cream with a cookie crust drizzled with hot fudge.) My son's facial expression in the photo accurately sums up Hula Pie.
Dinner with friends our last night. Hula Pie!
We took a van ride out to the middle of a pineapple field and ate pineapple cut straight from the plant. You'll never find a pineapple in store as yellow as the ones in the photo. If you do, be aware that it is likely already spoiled as their shelf life when picked in that hue is only a day or two.

The pineapple farm
We took a treasure hunt through a lavender farm on the side of Haleakala. The treat at the end of the hunt was a delicious lavender infused shortbread cookie. After eating that cookie, I was very glad I bought a package of culinary lavender.

View from the Lavender Farm
We took a 45 minute one way boat ride on the Pride of Maui to snorkel with fish and turtles. I picked the shorter cruise that stayed close to the mainland (I could have swam to shore if I had needed to) rather than the 5 1/2 hour ride out to Molokini Crater. This was the boys' first boat ride. 50% of the family gets terribly motion sick, so I was terrified to commit to a trip longer than the 3 hours we did. Everything went fine thanks to the help of children's and adult Dramamine, although Daddy Monkey at one point was not enjoying the top deck and moved to more stable deck elsewhere in the boat.

Big Monkey driving the Pride of Maui with Mama in the background and Baby Monkey asleep in my lap
Baby Monkey on the standup paddle board




We rented stand up paddle boards,threw the monkeys on the nose, and cruised our beach. The view of the coral was as gorgeous from these boards as when we were snorkeling. It gave Baby Monkey a great chance to look over the side and really enjoy the colorful fish as he was not as fond of snorkeling. I'm not sure Big Monkey was that crazy about snorkeling or the paddle board rides. At least they both saw a turtle at least once in the water.
The only photo I have of Big Monkey on the board
There was also a lot of beach time, pool swimming (with a water slide!), and shopping. Basically, a very relaxing and fun family vacation that we didn't think we would be able to enjoy for several more years at the soonest.

Beach Time
We did have one little hiccup during the trip. On night 3 the fire alarm went off in our building. It was a false alarm (word was some kid pulled a fire alarm in the halls somewhere). It completely freaked out Big Monkey. He made himself sick, couldn't sleep that night, and basically didn't want to have anything to do with our hotel for the remainder of the trip (thank goodness we didn't spend too much time in the room!). The morning after the fire alarm event, Big Monkey took his peanut dose as usual. This was the same dose, given the exact same way, that we have had for two weeks at this point (the usual time where we would increase the dose a little). Well, apparently extreme stress can affect one's tolerance in the same manner that a cold/flu/fever can. About 10-20 minutes post dose, Big Monkey complained that his chin itched. He had a very fine and light pink rash all around his mouth. It reminded me of the rash I saw during his very first peanut reaction. It lacked the facial swelling that I saw that first time though. Within minutes it was already improving on it's own, but I still administered a 24 hour course of medications per our anaphylaxis plan and let Dr. R know of the development. Dr. R was concerned that maybe Big Monkey was coming down with something. He had me watch for any sign of congestion or a cold. Nothing. Big Monkey was a perfectly healthy but stressed little guy. Needless to say, while this process has given us so much freedom, it also comes with it's surprises.

Can you see the light red lacy rash around his bottom lip?
Four days after our return we increased Big Monkey's dose by 150mg without a hitch. We have now been on a whopping 1150mg (that's 1gram + 150mg) for almost 2 weeks with no issues. Life is good.

Ululani's - Best Shaved ice ever!

Tuesday, May 27, 2014

Chugging Along

As exhausted as I feel at only 8:44pm, I must say that today has been an amazing day. Our life is GOOD, no GREAT, and I praise God for that!

Overall, 2014 is shaping up to be an amazing year. Back in January, Daddy Monkey and I knew that this year had a lot of potential. Never did I expect it to turn out quite this amazing so quickly.

Today was a big peanut updose day for Big Monkey. Our original plan from last time had been to increase from 750mg peanut flour to 1 gram! I'm not sure why 1 gram feels like such a big milestone to me, but it does. However, when we arrived Dr. R told us he was planning on trying to reach 2-2.5 grams, which would have been huge. The change in plan was probably due to Big Monkey's success and lack of reactions recently. Unfortunately (or maybe fortuneately for mommies nerves?), Big Monkey woke up with a cold yesterday. Blah.

No fever and no chest involvement meant Dr. R still wanted to try to make some kind of progress. An examination showed a mild ear infection though, so we could only move forward if we agreed to a course of antibiotics for that. Knowing how an updose can really challenge and wear our Big Monkey's body, I agreed even if it was otherwise likely to heal on it's own. While I am not a proponent of overuse of antibiotics, this was the right time to use them as a sort of "just in case."

So Dr. R went off to prepare our 1 gram dose. He came back a few minutes later with a small cup hidden in his hands. He asked Big Monkey if he wanted to see, then said oh maybe not. This caught my curious Big Monkey's attention even though not much does when he is playing Angry Birds. He wanted to know what was in the cup, but also looked very unsure (i think he knew what was in the cup). Dr. R showed me first. It was a peanut. The little poisonous thing that we have spent so many years trying to avoid coming anywhere near, and there it was in a cup. A whole peanut and a few small chunks of peanut. That is what 1 gram looks like in Dr. R's protocol. I can't say that my heart didn't begin to beat faster because it did.

A peanut was like a wake up call. This is real. Not some tan powder that faintly smells of peanut butter but could really just be scented unbleached all purpose flour. A real, WHOLE nut! I wish I had taken a picture, but I was trying to play cool and calm for Big Monkey. He peeked in the cup and said he didn't know what it was. That was quickly followed by " but I think it may be a peanut." Yup my son, it is.

When Dr. R put it on to the spoon, Big Monkey's eyes got huge. As much as my brave little 5 year old understands about this process, I guess he never realized that he was going to eventually have to eat a peanut. He blurted out "I'm not ready!" and scooted to the opposite side of the exam table. He looked at me and I told him it was ok to eat the peanut if Dr. R or mommy gave it to him, but only if one of us give it to him (I didn't need him thinking this meant he could eat anything anyone else gives him). He still looked horrified. Honestly, I was chuckling inside. I have done my job as a food allergy parent well!
We reassured again and told him all he had to do was chew it and hold it in his mouth (he's not allowed to swallow right away to make sure he doesn't have an instant reaction). Still looking horrified he asked me " and then where does it go?" He couldn't even fathom swallowing this nut and I felt proud and a little bit safer even if I didn't know if he could tolerate it or not. Getting nowhere, Dr. R asked if Big Monkey wanted to go back to the flour and applesauce. Yup, that was 100% agreeable and back to Angry Birds he went. Into the trash went the peanut and back to the prep area went Dr. R, who is the most patient doctor I have ever met.

One gram of peanut flour takes a LOT of applesauce to mix in. I think it ended up being 3 or 4 bites for Big Monkey, but, so long as it didn't look like a peanut, he was game. Then we waited, and waited, and waited some more. For what? Well, nothing since nothing happened, and that is the way we like it. No tummyache, no itching, no skin changes, no hives. Nothing but sweet success. 

Why is this all so exciting today? Well because OIT has opened yet another door for us - an across an ocean flight. Daddy Monkey and I have dreamed for years about taking the family to Hawaii, but a flight over the Pacific ocean hours from any land and life saving medical crews was out of the question. Until now. Sure, we are still hours from land and medical crews, but the likelihood of a reaction is now almost zero. We still chose an airline that does not routinely serve peanuts. We will still inform the flight crew of our allergy. I will still wipe every surface in our rows. We will bring all our own food. We will request sealed drinks and wipe them down. However, now I don't have to worry about the spots I missed, the peanut dust that could be in the air, the unseen residue that could be in the bathrooms, or what the passengers are eating around us. He is very, very unlikely to react to any of those things at this point. So a trip to Hawaii is in our near future, and we all couldn't be more thrilled. I will be sure to bring back some photos of the "new fish friends" that the Monkeys are planning on making while there.

Sorry for the lack of photos in this post. Mobile blogger and my photos do not seem to get along. I will try to add some tomorrow.