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!

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 mommy's 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. 

Thursday, May 1, 2014

Where has time gone?!?

Can you find the green Easter egg? The boys eventually did.
Ok, I thought only a month had gone by since I last posted, but apparently 7 weeks only feels like 4! Oops. Well, no news is good news right? Right.

Baby Monkey chillin' at Grandma's

We have been busy little bees in the monkey household. I am not exactly sure with what, but I know we have been busy. I know, not helpful or interesting.

Big Monkey has been rocking the updoses. So far this round he has not had a single problem. He caught a mild cold prior to our last dose, so we had to postpone that updose by a week. We had to wait until every last sign of congestion was gone. Thankfully, we had a little extra time between appointments and didn't have to reschedule our next visit. So everything is still on schedule. We just completed our last updose before returning to the office for our next be "challenge" of hopefully 1 gram. This would be approximately 5 peanuts. Cue nervousness.

Summer is arriving as well and both the boys start swim lessons next week. Woot! This will be Baby Monkey's first year in non mom and me swim lessons. He is so not thrilled, but he will start in a class with Big Monkey, so I think he will be fine. I will make sure to take pictures!

So that is about all that is going on, but I wanted to update with all is well and we are progressing! Life is amazing as is our new freedom.
Yum, peanut dose (and no that is not a peanut butter and jelly sandwich, it's peanut free Barney Butter Almond butter)

Friday, March 14, 2014

A Whole New World

Wednesday March 12 was the most amazing day for Big Monkey in terms of his peanut allergy. We went in for our first in office updose. I had no idea how Dr. R was going to approach the updose, but I knew the goal was a big updose. 
We arrived and the hospital required Big Monkey to wear a miniature surgical mask. It is cold and flu season and they are trying to protect their patients. He looked so cute, but he said it was sort of hard to breathe in it. We removed it once we got into the allergy clinic. 

The clinic was a ghost town as apparently we were squeezed in during the lunch hour. I sort of enjoyed the peace and dim lights. Considering how nervous I was, it helped calm me down a bit. They got us all set up and called in Dr. R. We sat down with 4 doses in front of the doctor. The final dose would make for a final tally of 4 times the amount of peanut flour compared to the previous dose. What makes this even more special is that he would be consuming this dose more or less all at once. Each would be taken about 20 minutes after the previous, but this doesn't leave time for anything to leave the system. It all just accumulates. Yikes!

For the past few months we have been dosing with "split" doses. I asked how this works. Basically, the time between the doses creates almost a time release like effect (like what would happen if you took a drug in a time release capsule). So it helps Big Monkey's body not be overwhelmed by the peanut. 

I won't say I wasn't scared. Big Monkey didn't seem concerned at all. At least I somehow manage not to project my fears and anxieties on him. 

Well, my fears we completely unfounded. Big Monkey sat there without even the slightest itchy spot. No redness, no hives, nothing! About 20 minutes after the final dose he said his tummy hurt a little, but it was nothing like before. The last time he spiraled downhill rapidly and looked like he was going to toss his cookies. This time he was asking for a snack and ready to run around within minutes. Of course he wasn't allowed to run around for the next two hours as we had to observe our normal calm period. We did get to wander around the hospital grounds for the next few hours. So we took a stroll outside. 

They wanted us to stay for at least another hour after that, but I was welcome to stay until 5pm if I was worried about a delayed reaction. Dr. R assured me that he was pretty certain that any reactions after the first hour would likely be no more serious than hives, especially if we walked around a little early on. Of course, nothing is a guarantee, but I felt that he was likely right based on what I have seen so far with my son. So we waited another hour and then went back to the clinic for one more vitals check. By the time we left the hospital, it had been several hours since the last dose and there was not a sign of anything. Big Monkey wasn't even sleepy like the last time. Woot!

 We are back on our split dose for now, but this is still amazing! The best part of our visit was not even the updose though. I know, how can it get better than that?

Well, Dr. R gave us the go ahead to consume made in the same facility, made on shared equipment, and may contain foods (not foods that actually contain peanuts but basically those that may be cross contaminated)! Anyone who has ever experienced shopping for a person with a food allergy knows just how huge of a deal this is. I can now buy from the bulk bins. I can now buy any brand of tortilla chips (pending they are not fried in peanut oil). I no longer need to special order other nuts from a peanut free facility (which is expensive by the way). I will likely no longer have to visit 3 grocery stores just to find the safe versions of all the items on my list. Huge deal.

A long term plan was also discussed. Based on Big Monkey's size, Dr. R wants to spend however long it takes this year to get to 4 grams. That is approximately 20 peanuts and in his opinion and protocol will ensure that Big Monkey is a little more than bite proof but not to the point of incorporating peanuts into his diet. Full incorporation is the end goal of Dr. R's protocol, so that will be the end goal. After we reach 4 grams, we will spend the next year or two working our way toward 9 grams. That will be considered graduation and Big Monkey will be able to incorporate peanuts into his diet. We will work toward this slowly with updoses only occurring once every 3 months or so. So we are in this for the long haul, but everything after this year will be much more manageable. Can you imagine the potential this all holds?

So what did we do to celebrate? We went and had our first non safe brand chocolate square and ice cream! And it was AMAZING! I think it was the best tasting ice cream and chocolate I have ever eaten. Probably because it wasn't served with a side of panic. 

Wednesday, February 26, 2014

Progress, and please don't try this at home

It has been two weeks since our last updose, and all has been well and busy. We took the boys to the drive-in movies for Valentine's day to see "The Lego Movie." Now I have two little boys running around saying "I'm here to see your butt" and a husband who keeps singing "Everything is awesome!" It's all a crack up really.

I bought the boys these cheap little growing sponge things from the craft store last week and they thought they were the most amazing things ever. It was a great lesson on talking about things dissolving and absorption. The sponges now live in the bath tub.

The boys picked out new pets. We've been talking about it for awhile, so we finally took the plunge. The tank sat empty for a few days before we brought these two buddies home. Sadly, the little blue one didn't even last 24 hours, but we have a new bright orange one to keep the little yellow one company. We'll work out way up to about 8 guppies over the next few months. 

I took the boys out for lunch one day after Big Monkey had to have a biopsy of a strange growth on his elbow. He was not anticipating a needles and stitches from the dermatologist that day, so he received several bribery treats in return for sitting still. We'll have results on Monday and hoping that they are nothing. For now he is rocking his first two stitches just below his elbow.

We made more peanut doses. I'm getting faster. It no longer takes multiple hours. Just half and hour or so for this many.

And finally, we rounded off the last two weeks with another updose today. I was a little nervous about today's updose. We doubled our lunch dose and now our total dose for the day is the twice what we had a hard time with in December. It was a big step. Big Monkey seemed a little extra tired today and his allergic shiners (dark circles under his eyes) were a bit more prominent, but otherwise he did really well. No hives, no strange feelings, nothing. So that's good!

With that said, please, please do not try anything like this at home. If you or your child have been diagnosed with a food allergy, strictly avoid your allergens unless otherwise directed and under the supervision of a board certified allergist. I have spoken with a few people over the last month who, upon hearing about our journey, have said something along the lines of "oh yes, I decided awhile ago to expose my kids to small amounts of the things they are allergic to. It just makes sense." Thankfully, the people who mentioned this were not talking about anaphylactic allergies, but even then exposure to allergens should be avoided. OIT without proper medical supervision is very dangerous. Even with proper medical supervision OIT can feel very scary. I have a love hate relationship with our updose days. I am excited but also scared out of my mind as to what could happen if his body refuses to tolerate the new amount of peanut protein.

So I leave you with a picture of Big Monkey with his drawing of a monkey. More to come in a few weeks! We'll be back in Dr. R's office and moving forward in some form.

Thursday, February 13, 2014

Thin Crust Pizza with Walnut Kale Pesto

We eat more than bananas in the Monkey Kitchen. Last nights dinner of whole wheat thin crust pizza topped with walnut kale pesto, goat cheese, ham, mushrooms, and arugula was by far better than bananas, even though I really do like that fruit too. Several people have asked for the crust recipe, so I thought I would share here.

I often don't know food is picture/share worthy until after it has been consumed 

Whole Wheat Thin Crust 

- 2.5 cups whole wheat flour (you can use white flour or any combination of white and whole wheat flour if you prefer)
- 2 Tablespoons cold butter
- 1 Tablespoon yeast
- 1 cup warm water
- pinch of salt (optional)

I make this dough using my Blendtec blender. I have made it in a food processor before, but it is much harder to get a really thin crust that way for some reason. The blender seems to pulverize the flour more or something and makes it possible to roll it out thinner. With a food processor you might be able to get a thin crust with some good elbow grease.

Cut the cold butter into a few pieces and add butter and flour to blender. Pulse until combined. The flour will go from looking powdery to looking like a lightly damp sand almost. Add the yeast and water and salt if desired. Pulse until dough forms a ball.

Remove from blender and place on a lightly floured surface (I usually place on lightly floured parchment paper. I also flour my hands and lightly flour the dough top). At this point I usually divide the dough into 2 pieces to make 1 large pizza and 1 med/smaller pizza (or 2 individual size pizzas) for the little monkeys as they don't always like the "adult pizza). Roll out using a rolling pin to the desired thinness. Pierce all over the crust with a fork.

Parbake your crust at 400 degrees for approximately 3 minutes. I pulled my out of the oven as soon as I started to see bubbles forming. I bake directly on my oven rack with the parchment paper, but you can use a pizza stone, just your rack or a baking sheet if you would like (it might be less crispy though).

Remove and add your toppings of choice.

Bake pizza at 475 degrees for about 10 minutes. I honestly didn't keep track of time last night as I just sort of stood there and watched until the pizza looked brown on the edges and the cheese was all melted and bubbly.

Kale Walnut Pesto Sauce 

-1 bunch of kale
- 1/2 cup to 1 cup of basil leaves
- 1/2 cup unsalted walnuts (The recipe actually called for almonds, but we eat plenty of almonds and Big Monkey is under orders from the allergist to consume more walnuts during treatment and he's not crazy about their texture whole)
-1/4 cup olive oil
- 3 cloves of garlic 
- 1 tsp of salt (or more to taste, I accidentally put WAY more than this and it was a little too salty but still good)

Typically pesto sauce includes Parmesan cheese. This recipe called for 1/2 cup, but I left it out and didn't miss it at all. So add it if you think you need it.

Remove the center stalk from the kale leaves and place all ingredients in a food processor. Pulse until smooth.

This will make way more than you need for the pizza. So place in jar in the fridge for a few days. I plan to use mine on pasta tonight.

Wednesday, February 12, 2014

Our Most Amazing Updose to Date

I am considering today's updose the most amazing so far. Why? Well, today we finally got back to the dose we came home on almost exactly two months ago! In fact, Big Monkey is consuming MORE peanut flour in a 24 hour period than he was two months ago. And you know what? He is doing just FINE! Great even!

My 2 Monkeys
Yes, I will admit that I was a ball of nerves this morning before we doubled the morning dose. If you remember, we are currently dosing once at breakfast and again at lunch (not necessarily the same dose). So today we doubled his breakfast dose so that it is now the same amount that we attempted but reacted to back on December 14th. His lunch dose will remain the same as the previous dose (which is half the morning dose). I'm still not clear how exactly his body is processing this split dose approach. I don't know if it is a cumulative effect or if the separation in time sort of lets his body reset itself. Either way, this is a huge step forward for us and really does prove that this is working. Last time he took this dose he broke out in full body hives. This time he had one little itchy spot on his back, but there were no hives there. Dry skin maybe? 

Obviously I went into OIT with the belief that it worked. However, seeing is believing and I am currently amazed!

Hanging with Daddy Monkey in the Monkey Mancave
Today I am especially grateful  that Big Monkey did not react as I am experiencing my own reminder of how terrible a full body allergic rash really feels. It is no fun and I am reminded of what an amazingly brave little trooper he really was those first two weeks. Although I must say, after two days of this itching and hives under my hair, I'd gladly drink that charcoal and take the medications Dr. R has laid out for us in the event of any unexpected reactions! Don't think I didn't think about actually doing it!

Calm hours are sometimes spent "running" with Mommy (and being asked if they are twins)

Wednesday, January 29, 2014

Second Updose

Big Monkey completed his second updose today. Thankfully, it has so far gone off without a hitch. We are now at approximately the same dose that we went home on back in mid-December. Of course, it is still a split dose, so it's not quite the same as what we tried taking on December 14th. It has been a little bit of a challenge dosing once in the morning and once at noon, but we are managing. Big Monkey gets tired of having me hover over him and keep him close for that many hours in the day. He's also been sleeping in a lot later than he used to, so getting some active time in between doses, lunch, and Baby Monkey's naptime is sometimes difficult.

Thankfully, Big Monkey has learned a new skill this week that is helping burn a lot of energy in a short amount of time! He learned to ride a two wheeler bike as he refers to it. He used to ride his bike with training wheels, but was never quite that interested in riding. He used to ride for maybe 10-20 minutes before he was ready to move on to something else. Now with the "two wheeler" all he wants to do is go outside and ride all day long if he could! It's cute.

Saturday, January 18, 2014

First updose and other developments

This week Big Monkey had his first updose of sorts. It was very nerve wrecking, but also a very exciting moment. I felt like it was the first moment when we would see if this process was working or not. Just three and a half weeks ago Big Monkey's body could barely tolerate the amount of peanut flour we were on. We spent a week battling minor hives before his body decided to tolerate that dose. So, of course, I was nervous about giving him even more. We approached this updose a little differently than I've heard about before by taking our normal dose and then adding a second dose later in the day. I have no idea how this changes things or makes it easier, but it was doc's orders, so it's the new schedule for awhile. The drawback is that each dose is followed by a two hour "calm period" as we call it where Big Monkey has to stay very calm. It's a challenge to keep an active little guy calm for that many hours out of our day! The good news though? So far Big Monkey is tolerating his new dose very well. So something is working!

Calm outdoor activities that the boys have come up with - brushing rocks
With all the time we need to spend calm we've been trying to focus on school again; however, Big Monkey has had very little interest in school and very little ability to pay attention. I believe everything going on has him distracted and is currently wearing him out. He's been more interested in coloring and building and re-building all his new lego sets, so that is what we have been doing.

Even Baby Monkey has his set of Legos (that we're trying to keep organized!)
However, when we did manage to accomplish a little schooling, we all learned a little. Big Monkey is slowly making progress on learning to read. He surprises me on what words he can sound out now that he has learned the basics. We're using the book "Teach Your Child to Read in 100 Easy Lessons" as recommended by a friend. What an amazing book that gives real results and is not hard! We love it and Big Monkey even writes me letters by sounding out words. Yes, they are often spelled terribly wrong, but phonetically, he is almost spot on in those letters.

I decided this week that Baby Monkey is ready for more formal schooling. Before the holidays I was allowing him to do more free form activities like building blocks, drawing on papers, and cutting with scissors. He was content with that back then. I was also focusing on basic recognition of numbers (1-5) and letters. He mastered number recognition up to 10 very quickly, but did not appear to be able to recognize more than 2-3 letters. That was fine. Then one day last week he was working on a giraffe puzzle that is put together by putting letters in order. I realized then that he can recognize most letters of the alphabet. He is also demanding "work" in his work boxes and he wants real work like his brother's, not blank papers and blocks. So I pulled out the letter of the week curriculum that Big Monkey used last year and let him start on that. So far, he's enjoying it. He will probably do this curriculum again next year unless he manages to master all the skills before summer.

Baby Monkey also showed me that he can almost write his name! I wrote it for him and he "copied" my letters. Others may not be able to read it, but I see the similarities to the letters (oops! I took a cute photo of this one, but realized it would then show Baby Monkey's name, which is something I will not post publicly on my site).

His coloring also improved 100% overnight. He went from scribbles to this very orderly, color along the lines first and then fill in the insides method. It's quite interesting to watch.

Coloring by outlining first
This past year Big Monkey was diagnosed with a red-green color deficiency (a form of color blindness). I knew I was a carrier, so I had him tested. Basically, Big Monkey can see most colors; however, there are certain shades of green and red that he does not see as green and red. Any color made up of those particular shades of green and red will also look different to him. For example, if a purple color is made from a wavelength (shade) of red that Big Monkey cannot see, then he only sees the blue shade and thinks the color is blue not purple. We had a good chuckle this week when Big Monkey was coloring an apple tree and he looked at me and said, "did I color this green?" I told him no, that it was brown. He laughed and said, "ahh, I thought it was green. Oh well." Needless to say, I help him find the green crayons often.

Big Monkey's "green" apple tree
Hopefully not much will change for a few weeks. I'm hoping no excitement and thus nothing much to post about. Until next time stay warm, stay well, and stay happy friends! 

Sunday, January 5, 2014

The Beginning of OIT

Hello 2014 and a new resolution to actually keep this blog more updated1! I can't promise weekly updates, although I will sure try. I know there are people who use my blog as a primary way to follow Big Monkey's journey and I'm slacked and left them hanging. Sorry all! I will again try to make this a priority.
Christmas Pajamas
The last three weeks has felt more like four with everything we've had going, but now that we're at January 5th, I think I can see that 2014 is going to bring some amazingly wonderful things to our life. The last 3 weeks have included a trip to the allergist to start OIT, an unexpected extended stay near the allergist due to a complicated start, Baby Monkey turning 3, Christmas, a new year, and Big Monkey turning 5!

Baby Monkey's 3rd Birthday
December 13, 2013 was the first day of a major journey for Big Monkey. That day he officially began peanut desensitization therapy (I'll call OIT) with the amazing allergist we found last spring. We've been treating other allergies and working toward this day since May, but even so, I still cannot believe that we started. I had of course hoped for a smooth and uneventful beginning, but OIT has proven to be a whirlwind of a process already.

OIT Day 1: In Good Spirits (what little boy with unlimited access to an iPad for the day wouldn't be in good spirits??)
At the office with Dr. R, Big Monkey did fantastic. He showed no fear, listened well, answered our repeated questions about how he was feeling, and showed Dr. R his real personality. Thankfully, Dr. R liked the fact that Big Monkey had to put his own little twist on everything (i.e. there was no way we could get him to say "E" without some theatric or another). We made it to the 5th of 6 peanut doses that day before Big Monkey said his tummy hurt (just moments before the 6th dose was to be given). He quickly progressed downhill to looking very green, so we opted to stop. Dr. R gave Big Monkey a dose of benadryl to help, had us walk the halls, and then eventually sent us on our way with instructions to feed Big Monkey a daily dose of peanut flour well below the 5th dose that caused the stomach ache. All was well until the benadryl wore off. That's when the hives appeared everywhere. Big Monkey even had them on the back of his ears. We were given instructions to follow a 24 hour course of medications to combat the reaction. We figured this was all a reaction to the 5th dose in the office, which we already knew was too high.

I weigh out every dose and place it a cookie or muffin for Big Monkey to eat every day
Unfortunately, Big Monkey reacted similarly to the lower dose that we gave at home. Hives and a 24 hour period of medications again as well as instructions to lower the dose even more. We went through about a week trying to find the right dose for Big Monkey. You're right if you think it's a little strange that it took so long. We should have went home on the right dose, right? That is supposed to be the plan. What we didn't know is that Big Monkey displays some very delayed reactions. The reactions to the doses we gave at home came anywhere from 3 to 5.5 hours post dose! Typically a patient will react within 20 minutes and maybe as long as an hour or so later. So it took a little longer to figure out how much Big Monkey could tolerate. Thankfully, we are armed with a very extensive, aggressive, and reliable anaphylaxis plan.

Part of our anaphylaxis plan includes activated charcoal. It tastes like thick black, chalk, but Big Monkey thinks it's funny that it makes his mouth look like something out of a horror movie
Christmas Day brought our first hive free day (we had several days on our current dose where Big Monkey was experiencing 5 or less tiny hives that were not enough to make us back down the dose any more). We have been hive free since, although not without incident. We've seen everything from strange red rashes on his forearm, bright red ears, vomiting, and complaints of "needles in his ears." Most of these are due to external factors such as getting over heated, not eating enough before his dose, and his dose aggravating his other allergies. Regardless, every symptoms brings a new wave of stress and panic.

Adorable brotherly love (too bad they aren't always like this)
As a mom, I have never felt so excited and so scared at the same time. My eldest baby who has been severely peanut allergic since before he was 1 year old, is now eating the equivalent of 1/8th of a peanut every day. Yes, this is a tiny amount compared to someone who is not allergic, but it is a start! It brings us hope. This week Dr. R will discuss when and how much we will updose. At this point, I'm just hoping the days following the new dose are less eventful than our first week in this process.

Big Monkey and his mommy made custom cake