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