Wednesday, September 10, 2014

Battling Cold Season

Cold season peaks in September, and it has been kicking our butt since July (well, maybe even as far back as May). When we last visited Dr. R in May, Big Monkey showed up at the office with a cold and raging ear infection. Thankfully, we were still able to increase our dose at least a little. I could have never predicted it was the start to a somewhat challenging summer in the sickness department, especially since summer is usually our healthiest time.

Picnic lunch during our first week of school
June went well, but July brought around cold season in full force. Big Monkey started with some GI (gastrointestinal) issue. It settled in just a few days after a dose increase, so we thought it may have been related. Dr. R had us cut our dose in half for a few days (3 days? 5 days? I can't remember now). It seemed to solve the problem, then Little Monkey (we are now referring to him as Little Monkey instead of Baby Monkey out of respect for the fact that he really dislikes being called a baby anymore) came down with the same GI issues about a week after Big Monkey. Well, thank goodness it didn't set us back any on dosing. We increased back up to our normal dose after the few days at a half dose with zero issue. As soon as Little Monkey was well again, Big Monkey got hit with a sore throat and snotty nose. Really? No fever was involved so we held steady at our current dose and just delayed any increases until he was well. That passed around the house, but was gone in about a week.

I think I managed to keep the boys well for 2, maybe 3 weeks (it is all a blur at this point), and then Little Monkey threw up and spiked a fever. Great, the dreaded fever. I bleached, did my best to keep the boys separated for a few days, and attempted everything to hopefully keep Big Monkey from getting this one. Well, attempts didn't work. Four days later Big Monkey threw up. Thankfully, this was a very mild and very short GI bug. Also, thankfully, Big Monkey got sick at 11pm. So we skipped his dose the next morning and went right back to a normal dose the next day. Unfortunately, this bug hit the week before we were scheduled to visit Dr. R again. So we had to reschedule for 3 weeks later. This was our first delay since starting in December 2013. I think that is a really good track record.

Creativity was practiced while we were contagious and stuck at home. Little Monkey's helmet, shield, chest plate, and sword made from zoobs
Trip to the circus
Dr. R was squeezing us in during the lunch break just to make sure we could get in sooner rather than later, so I became hypervigilant the week before our rescheduled visit to Dr. R's office (can you blame me after having sick kids off and on for practically 2 months straight?). We pretty much isolated ourselves to the house for a week and my poor husband got sent to work with hand sanitizers and lectures about good hand hygiene (he got lectured despite having fairly good hand hygiene). I was determined that we were going to make it to this next appointment and be well when we got there. And you know what? I was successful. Even with a trip to the circus just days before.

Little Monkey at the circus
When Dr. R walked into the room at our appointment, his first words were, so are you guys all well today with a little chuckle (I have to email him EVERY time Big Monkey gets sick so he can advise us on how to proceed safely). I assured him we were well, and even he asked if I had any idea why we had suddenly gotten sick so often. I wish I had the answer for that, but I don't. I partially blame daily swim lessons all summer, but I think that's not the whole answer.

I'd love to say that our office visit was uneventful, but it wasn't. It was a successful visit, but it was a bit challenging. We have hit an amount of peanut flour now where it would be advantageous and a lot easier if we could switch to dosing with whole peanuts (that's right, actual peanuts!). Now remember, Dr. R offered Big Monkey a peanut back in May and he was too afraid to eat it. So I've been talking with Big Monkey about eating a peanut since May. We've talked about what a peanut tastes like (he eats other nuts) and how a the number of peanuts Dr. R would give him is the exact same as the flour he is eating everyday just not all ground up. I truthfully think the peanuts would taste better as the flour has sort of a weird taste. It has a peanut flavor, but with a sort of floury taste along with it. We even set up some bribery (I am so not against bribery in cases like these - this is not an easy task for Big Monkey). A trip to a local natural history museum to see the dinosaur bones as well as a trip to a local ice cream parlor (a first for Big Monkey) was offered. All he had to do was eat the peanuts that Dr. R gave him. Better yet, all he had to do was TRY the peanuts (so put them in his mouth). So even if he spit them out and switched to peanut flour, he would have earned his reward.

Yeah, none of that happened. Instead, there was a fight and a tantrum. This is an emotional journey for us and is difficult for Big Monkey to endure at times. He was all geared up and ready to eat the peanut until he saw it. Then he refused. He also refused the peanut flour in the applesauce and attempted to refuse the peanut flour in melted chocolate. Dr. R was willing to just not updose and give me instructions for later, but considering we drive 7 hours to get there and had already rescheduled, I insisted we work with Big Monkey to accomplish an increase. Afterall, peanut flour in applesauce or melted chocolate is nothing new for him. I was a little surprised that he responded like that at the appointment. Thankfully, Dr. R is a doctor with more patience than I think any other doctor on this planet has (he truly is a remarkable and unique individual). We managed to get Big Monkey to take his dose in melted chocolate. He consumed the equivalent of 2.5 peanuts. He developed a very faint and small rash around his mouth (probably from getting all worked up right before his dose), but it faded within 15 minutes without any medication. He was also exhausted the rest of the day, but otherwise did very well. Success.

We did still go get ice cream as I recognize that this process is not easy for Big Monkey and he needs something positive associated with it. Although, he did not get his natural history museum reward.
We also went home with an updated plan. A very exciting updated plan. We challenged at the office with 1.8 grams. Graduation from the program is 9 grams. Seems like a long ways to go, right? Well, Dr. R thinks that we can reach graduation over the next 3 visits. Amazing news! Of course, it is all dependent on how Big Monkey tolerates the larger doses. My understanding is that 4 grams and/or 6 grams can sometimes cause some issues. I am praying that we paid our dues during those first 2 weeks of this process and that we are now done with "issues." If all goes well, then we will updose to 4grams in early December. Then 6 grams at the next visit and 9 grams at the third visit. Since our visits are usually about 9-12 weeks apart, we have the real possibility of graduating by the end of next spring.

Little Monkey with his ice cream sundae
Of course, this also all depends on how many setbacks we have due to illness this year! I fear that this cold and flu seasons (flu season peaks in January usually) may be a bit brutal considering our summer. Hopefully I will be proven wrong, but Big Monkey cannot get the flu vaccine this year (we have been advised to avoid all vaccines until 4-5 months after completing the OIT program), so who knows what is going to happen. The rest of us will be vaccinated, so hopefully herd immunity will protect Big Monkey this year. Good hand hygiene and avoiding people who know are actually sick will also be in practice here. In fact, we may just avoid crowded places for this cold/flu season to ensure that we have a better chance of completing this program.

So far we do not have a good track record. We were due for another small increase today, but instead Big Monkey woke with a sore throat. Little Monkey has had some terrible congestion for 2 days, so I think it's safe to say that we have been hit by yet another cold this season. I'll take that any day over vomiting though.

First day of school!
PE at our house!
In other news, Big Monkey and Little Monkey started school on August 20! Big Monkey is officially a kindergartener! We homeschool, so it doesn't make a huge difference, but we are enrolled in a homeschool charter program through our state, so there are still things Big Monkey must accomplish. So far he is rocking his studies and enjoying most of it. Little Monkey is technically a preschooler, but often insists on doing the same work as Big Monkey. So he's a little between grades. He's too advanced for the pre-K curriculum that Big Monkey did at his age, but not quite advanced enough for all of Big Monkey's work (he is doing some of it right along side us). So I think I am going to switch him to the K4 program that Big Monkey completed last year along with whatever work he wants to do with us. It will be interesting to see what level Little Monkey is at when it's his turn to enter into the charter school in 2 years.

Enjoying the last bit of summer

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!