I Depend On You, You Depend On Me, You're My Sweet Boy

Last week I was getting my hair done when the hair stylist said something profound. She said, "Wow, he's depended on you his whole life to keep him safe. That's going to be a big adjustment now that he won't have to worry about peanuts.

I had never actually thought about it, but she was entirely correct. Even if my husband or mom, neighbor or teacher read a label, my son always asked if his mommy had read it and made sure it was ok. He double checked with me before eating anything new I brought into the house. He won't touch a thing at a restaurant without asking me if I have made sure it was safe first. I've been his lifeline.

Currently, he is eating six peanuts, twice a day. We have 4 more appointments to updose before his final challenge. He still cannot eat a peanut butter cookie, but he is allowed to eat a chocolate chip cookie made in the same facility as a peanut butter cookie. He can eat a cookie that "may contain traces of peanut." His body won't even notice such a trace amount, whereas a year ago, it would have potentially meant another shot of epinephrine. So much has changed for him already, yet, he still asks if I read the label...and I have.

Old habits are going to disappear slowly, more slowly than they were implemented, with certainty. I have about a month to figure out how I am going to feed him peanut products above his daily dose without hyperventilating. I'll get there, though, we all will.

I hear a lot of talk about how OIT is not for kids that are super allergic. Untrue. My son is Class 6 to peanuts, the highest it goes. His anaphylaxis was to cross contamination. He has always been contact reactive. Others say that it's too stressful and puts kids in a dangerous situation they wouldn't be in if they just used strict avoidance. Yes, OIT is stressful, but I KNOW I just gave him his allergen and I'm watching and there is a doctor a quick phone call away. If we are avoiding and think we ate something is safe that isn't, I will waste precious minutes determining what is happening before acting. That is the case for the roughly dozen people who have died of food allergies since October. They were all avoiding their allergen with diligence, which isn't always enough. Not one patient has died from OIT. Day by day, my stress has disappeared. I have watched my son's body overcome what it used to hate. I'm watching him blossom without the feeling of impending doom hanging over his head.

It's true that OIT is not for everyone, but day after day I see plain false information out there. Allergists who don't offer this treatment tell patients that there is no safe way other than avoidance or that this treatment only works for those with a mild allergy. Please read our story. Know that we didn't make this decision lightly and safety was always our number one priority. There is nothing in this world that would make me put my child's life in jeopardy and that is exactly why we chose this treatment for him. Waiting years for experimental treatments to possibly be released, all while my son is hiding in his shell just trying to stay alive was simply not an option when we had the opportunity right in front of us to change it all today.

As I have said in every post, I will never regret this decision. No matter how many ridiculous viruses we picked up here in Utah, how cold we got, how hard it was to be away from my husband and friends...no regrets.

Ho! Ho! Ho!

I will tell you, it is nothing short of a miracle when you watch your child eat a whole piece of a food that months earlier could have killed him...and he is FINE. Nothing happens. At all. The months of slow and steady increases, pushing his little body to adapt and overcome this thing it hates so much have paid off and you are seeing the results, twice a day, every day. A week goes by and you start giving him TWO peanuts twice and day and then....nothing happens!  He is fine. He is healthy. His body is strong and getting stronger.

It's been nearly 4 months getting to this point, but it has paid off, obviously. We have many more updoses to go and a winter full of germs, viruses and bad air quality to battle, but we will get through this. He will go home and live a life of freedom. Sleepovers, potlucks, airplane travel, baseball games, a cookie at a friend's house, sitting at a regular lunch table...these things will no longer induce fear. They will be normal, average, everyday things he can actually do. He will be able to live the life of a child, without fear, for the first time because we did something hard. Something hard that in the grand scheme of life, was but a blip in time.

Some days are long and stressful, but there are moments I have had with my children here that I may never have gotten at home under the every day stressors and routine we had. I've had a chance to really SEE my kids and their personalities blossom. We have watched old movies together and cuddled on the couch with no distraction. We have had "adventures." We have made new friends together. We have learned how to live with less.

Provided this awful tummy bug my youngest has does not spread to her brother, on Christmas Eve, my son will dose with something new...his very first Peanut M&M's. If you know me, you know my kids have never had McDonald's and we tend to stay on a very clean, whole foods diet. Let me tell you, when you are parenting singularly and life is upside down, you buy some chicken nuggets once in awhile. They're organic and you serve them with sweet potato fries, but you do what you have to do to be sure your kids eat and you can retain your sanity. In this case, you're damn right I'm going to let him eat Peanut M&M's. Never in my life did I ever think it would be possible. Heck, if it had been possible, I probably wouldn't have let him because it's candy! At this point, he has come so far and been so brave...yeah, he can eat them. We won't dose with them every day but I think this is a treat he has more than earned.

So, on that note, it's going to be a very Merry Christmas for us and we wish a very Merry Christmas to you all who have followed our journey (and at times, my ranting). We are so thankful for all the support we have had in the form of surprise packages, gift cards, phone calls, text, Facebook messages...it means the world to us.

xoxoxo

Amy

Ho! Ho! Ho!

I will tell you, it is nothing short of a miracle when you watch your child eat a whole piece of a food that months earlier could have killed him...and he is FINE. Nothing happens. At all. The months of slow and steady increases, pushing his little body to adapt and overcome this thing it hates so much have paid off and you are seeing the results, twice a day, every day. A week goes by and you start giving him TWO peanuts twice and day and then....nothing happens!  He is fine. He is healthy. His body is strong and getting stronger.

It's been nearly 4 months getting to this point, but it has paid off, obviously. We have many more updoses to go and a winter full of germs, viruses and bad air quality to battle, but we will get through this. He will go home and live a life of freedom. Sleepovers, potlucks, airplane travel, baseball games, a cookie at a friend's house, sitting at a regular lunch table...these things will no longer induce fear. They will be normal, average, everyday things he can actually do. He will be able to live the life of a child, without fear, for the first time because we did something hard. Something hard that in the grand scheme of life, was but a blip in time.

Some days are long and stressful, but there are moments I have had with my children here that I may never have gotten at home under the every day stressors and routine we had. I've had a chance to really SEE my kids and their personalities blossom. We have watched old movies together and cuddled on the couch with no distraction. We have had "adventures." We have made new friends together. We have learned how to live with less.

Provided this awful tummy bug my youngest has does not spread to her brother, on Christmas Eve, my son will dose with something new...his very first Peanut M&M's. If you know me, you know my kids have never had McDonald's and we tend to stay on a very clean, whole foods diet. Let me tell you, when you are parenting singularly and life is upside down, you buy some chicken nuggets once in awhile. They're organic and you serve them with sweet potato fries, but you do what you have to do to be sure your kids eat and you can retain your sanity. In this case, you're damn right I'm going to let him eat Peanut M&M's. Never in my life did I ever think it would be possible. Heck, if it had been possible, I probably wouldn't have let him because it's candy! At this point, he has come so far and been so brave...yeah, he can eat them. We won't dose with them every day but I think this is a treat he has more than earned.

So, on that note, it's going to be a very Merry Christmas for us and we wish a very Merry Christmas to you all who have followed our journey (and at times, my ranting). We are so thankful for all the support we have had in the form of surprise packages, gift cards, phone calls, text, Facebook messages...it means the world to us.

xoxoxo

Amy

100 Days of OIT

It's been 100 days since my son took his first peanut solution. 100 days of purposefully giving him his allergen under a doctor's carefully researched protocol in order to build his body's tolerance. There have been a few bumps along the way, but nothing has derailed us. In fact, the bumps serve as reminders why we are on the road to begin with and we begin to focus steadfastly on the destination ahead. Mostly.

I have written and deleted this 100 Days post three times now. Each time it said something entirely different. There is so much I want to convey but it's all emotional and not at all informational about the process. I should tell you how we are at 85% of a peanut and how, thank goodness, he loves the flavor. How I smell his breath like a weirdo because it's surreal that my contact allergic child smells like his allergen. I now share with him how tasty Reece's Peanut Butter Cups are instead of continuing to lie because I know he will be able to eat one some day. Even though I don't approve of the sugar content or ingredients, I'll give it to him anyway just to watch his face light up and because I never before thought it possible.

I should write a whole post about how crazy this last month has been, with Thanksgiving and my husband visiting, red ears, upset tummies, great days, homesick days, how hard it is to house hunt long distance, but my mind always reverts back to the moment I thought we would get set back in this treatment and I totally lost it. In the middle of a million good things, I latched on to the negative and spiraled out of control. Even now, I'm elated at our progress and I'm thinking back and beating myself up about those few hours where I wallowed in self pity. I should own up to my defects and move on, but it's easier to be mad at myself for my obvious character flaw.

This time of healing my son's body has also become a period self reflection. Thinking on how since his diagnosis he and I have fallen down a rabbit hole that he is emerging from and that I still catch myself putting on the brakes when someone is trying to lift me up out of it. I've been protecting him for so long, I've put off self care. I have spent thousands on doctors to help me feel like I should, like I used to, but I can see now what it's really about. As I watch his confidence grow, it reminds me of when he became so withdrawn...and I know that is when I stopped eating, sleeping and exercising and being mindful of my limitations. It's when I decided only I could do things in order to get them done correctly and safely. And then, at some point, Pinterest came on the scene and my do-it-yourself perfection neurosis finished me off.

Now I'm feeling self conscious because this post became about me. This isn't just about me. It isn't just about my son or the stupid peanut or OIT. It's about how all-consuming a life threatening food allergy can be for an entire family. No one goes untouched. Even the family dog was gently informed that he is allergic to peanuts and would not be consuming them.

While it may seem life changing to move to another state to seek treatment for our son, our lives were already changed. We are trying to recapture normalcy. I look forward to the day I grab food off the shelf at a grocery store and don't scan the back label and call the company before making a purchase. I can't wait to say no to the Costco sample because it's filled with high fructose corn syrup instead of explaining to the vendor that despite the item not containing peanuts, the label clearly states it was produced in a facility with them and that makes it dangerous to us.

All of this will happen. It will happen soon. We are halfway to our brand new, normal life.

100 Days of OIT

It's been 100 days since my son took his first peanut solution. 100 days of purposefully giving him his allergen under a doctor's carefully researched protocol in order to build his body's tolerance. There have been a few bumps along the way, but nothing has derailed us. In fact, the bumps serve as reminders why we are on the road to begin with and we begin to focus steadfastly on the destination ahead. Mostly.

I have written and deleted this 100 Days post three times now. Each time it said something entirely different. There is so much I want to convey but it's all emotional and not at all informational about the process. I should tell you how we are at 85% of a peanut and how, thank goodness, he loves the flavor. How I smell his breath like a weirdo because it's surreal that my contact allergic child smells like his allergen. I now share with him how tasty Reece's Peanut Butter Cups are instead of continuing to lie because I know he will be able to eat one some day. Even though I don't approve of the sugar content or ingredients, I'll give it to him anyway just to watch his face light up and because I never before thought it possible.

I should write a whole post about how crazy this last month has been, with Thanksgiving and my husband visiting, red ears, upset tummies, great days, homesick days, how hard it is to house hunt long distance, but my mind always reverts back to the moment I thought we would get set back in this treatment and I totally lost it. In the middle of a million good things, I latched on to the negative and spiraled out of control. Even now, I'm elated at our progress and I'm thinking back and beating myself up about those few hours where I wallowed in self pity. I should own up to my defects and move on, but it's easier to be mad at myself for my obvious character flaw.

This time of healing my son's body has also become a period self reflection. Thinking on how since his diagnosis he and I have fallen down a rabbit hole that he is emerging from and that I still catch myself putting on the brakes when someone is trying to lift me up out of it. I've been protecting him for so long, I've put off self care. I have spent thousands on doctors to help me feel like I should, like I used to, but I can see now what it's really about. As I watch his confidence grow, it reminds me of when he became so withdrawn...and I know that is when I stopped eating, sleeping and exercising and being mindful of my limitations. It's when I decided only I could do things in order to get them done correctly and safely. And then, at some point, Pinterest came on the scene and my do-it-yourself perfection neurosis finished me off.

Now I'm feeling self conscious because this post became about me. This isn't just about me. It isn't just about my son or the stupid peanut or OIT. It's about how all-consuming a life threatening food allergy can be for an entire family. No one goes untouched. Even the family dog was gently informed that he is allergic to peanuts and would not be consuming them.

While it may seem life changing to move to another state to seek treatment for our son, our lives were already changed. We are trying to recapture normalcy. I look forward to the day I grab food off the shelf at a grocery store and don't scan the back label and call the company before making a purchase. I can't wait to say no to the Costco sample because it's filled with high fructose corn syrup instead of explaining to the vendor that despite the item not containing peanuts, the label clearly states it was produced in a facility with them and that makes it dangerous to us.

All of this will happen. It will happen soon. We are halfway to our brand new, normal life.

Afraid to Speak

I'm afraid to talk about how well it's going because it might change. I'm afraid to think about what happens when we are done and we have no home waiting for us in Arizona. I'm afraid to tell everyone the changes in my family and in myself since we got here, lest they think we might abandon them back home in favor of staying in Utah.

A side effect of OIT for my son has been increased self confidence, becoming more social and lessened anxiety. My heart has leapt with joy over watching him acclimate to his surroundings more times than I care to admit because...those things didn't happen at home. They didn't happen in Arizona and he knows it. He begs every day not to go back. He says his friends will visit him and that will be fine.

I try not to think too hard about friendships that didn't cross the distance with us. I try to hang on to the dear friends who still text, call and send us goodies in the mail. I hope the others will at least resume to normalcy when we return and I remind myself that 9 times out of10, it's just not about me.

I'd be lying to say our family didn't need a shake up...something revolutionary that goes beyond just this treatment. We knew from the beginning that we would not come out on the other side of this the same. It's a good thing.

Image courtesy of Shellyart at FreeDigitalPhotos.net

At the end of the day, this is us, stripped bare. No brand new house in perfect suburbia. No pretenses. No one to impress. No shuttling kids from class to activity. This is just simply a family of four, loving one another day in and day out, being thankful for each other while trying to maintain our sanity. Lord knows, even in the best of times, 24/7 with those littles I birthed and love with my entire soul, is intense. Add to that, a part of us 700 miles away. We don't have time for the frivolous and unnecessary. Life is totally simple and completely complicated right now.

Afraid to Speak

I'm afraid to talk about how well it's going because it might change. I'm afraid to think about what happens when we are done and we have no home waiting for us in Arizona. I'm afraid to tell everyone the changes in my family and in myself since we got here, lest they think we might abandon them back home in favor of staying in Utah.

A side effect of OIT for my son has been increased self confidence, becoming more social and lessened anxiety. My heart has leapt with joy over watching him acclimate to his surroundings more times than I care to admit because...those things didn't happen at home. They didn't happen in Arizona and he knows it. He begs every day not to go back. He says his friends will visit him and that will be fine.

I try not to think too hard about friendships that didn't cross the distance with us. I try to hang on to the dear friends who still text, call and send us goodies in the mail. I hope the others will at least resume to normalcy when we return and I remind myself that 9 times out of10, it's just not about me.

I'd be lying to say our family didn't need a shake up...something revolutionary that goes beyond just this treatment. We knew from the beginning that we would not come out on the other side of this the same. It's a good thing.

Image courtesy of Shellyart at FreeDigitalPhotos.net

At the end of the day, this is us, stripped bare. No brand new house in perfect suburbia. No pretenses. No one to impress. No shuttling kids from class to activity. This is just simply a family of four, loving one another day in and day out, being thankful for each other while trying to maintain our sanity. Lord knows, even in the best of times, 24/7 with those littles I birthed and love with my entire soul, is intense. Add to that, a part of us 700 miles away. We don't have time for the frivolous and unnecessary. Life is totally simple and completely complicated right now.