Turning 9 and Having Patience

Well, I hope everyone that use to follow this blog has had some patience for my lack of posting and is still following! Sorry yet again for the lack of updates in over a year. I think it is because everything has been much of the same and we're still waiting for any major changes. Sometimes that is exhausting considering we were not experiencing smooth sailing at the time of my last post in 2016. I can't say that 2017 brought much change for either better or worse. I feel like we are sort of stuck in a holding pattern. I suppose that is better than things going downhill? Think positive, right?

Anyway, I have some new friends that may come across this blog and have no idea what we have been up to or what I am talking about. Heck, it has been so long since my last post that I wouldn't be surprised if past readers have forgotten what we've been up to. So I will provide a quick recap.

Today Big Monkey turns 9 years old. NINE! Having my first baby grow another year older makes me look back to where he has been and what an amazingly strong person he is growing into. Some days I have a hard time imagining continuing our current path and yet he never seems to give up. So we tread forward.

The new 9 year old in the house 

When Big Monkey was 1 he was diagnosed with a severe peanut allergy. He had his first major reaction just before he turned 3 and plenty of small skin issues before and after that. Right after his 4th birthday I found Dr. Randhawa in Long Beach, CA. We met with him when Big Monkey was 4.5 and decided to enter into his Tolerance Induction Program (TIP). In short, in this program, we fed Big Monkey teeny, tiny amounts of peanut to help his body learn to tolerate his allergy. Slowly we worked up to larger and larger amounts with the end goal being a weekly or monthly mega "dose" with free eating of peanuts in between like any other non allergic individual. Four years ago Big Monkey ate his first tiny bit of peanut. It was not as easy as it should have been for him. He suffered through many, many reactions in the first 2 weeks. Finally his body calmed and we updosed over the next 2 years slowly, but mostly uneventfully. Big Monkey graduated 2 years ago last October. It was a fabulous moment. However, 6 months later we had the reality check that his body was not willing to tolerate peanut still. We reduced his dose to 30 peanuts 30 times a week. Things seemed to improve for a short period of time, but then he went back to reacting at least 1-2 times per month.

This past August we discovered that Big Monkey has poor lung function (partially explains why his reactions have started to involve his lungs and breathing as well as why EVERY single cold in 2017 went straight to his chest). So we placed him on a daily inhaler and saw an improvement with his peanut dose for about a month. Then we went right back to the 1-2 time a month reaction. Sometimes they are massive reactions complete with wheezing, snot, swelling, cough and hives, and sometimes they are just itching and hives. I can never predict when a reaction will happen or what type it will be. Just this past week he reacted to 5 mini peanut butter cups from Trader Joe's which should be equivalent to approximately half of his normal 30 peanut dose.

What a reaction can look like - dark circles, red spots, exhausted eyes. This isn't the worst I have seen.

It has been a roller coaster ride to say the least. Some days I really cannot see how we can keep going like this, but in the next breath I cannot see how we would return to a life of complete avoidance of everything. Jackson used to react to touching contaminated surfaces. It made it hard to go anywhere or do anything. It also made grocery shopping so hard as we had to have foods not made in a facility where peanuts are handled. So we will return sometime in February for a follow up and to run more tests and find out what is really going on. We thought it was just the fact that his grass allergy is still sky high and his lung function is crap (it's no wonder the kid could never keep up in soccer and is the slowest any time we go hiking). It could still just be a combination of these two things, or maybe there is something else. It is unclear to me right now. None of this has been easy though. It has been a very long and sometimes very scary 4 years. He wants it to work though, so we just keep going.

Now if we can just get through flu season without him getting influenza to further tear up his poor little lungs and body. Here is to a better 2018! My birthday wish to him.

The new 7 year old in the house 

Little Monkey also just turned 7 and we added an adorable little Monkey Kitty to our family (who is truly as much a monkey as the boys are). So while 2017 has had some difficult moments, it has not been so terrible. Nevertheless, I am still ready to start the new year!

The newest member of the family