Be My Guest

After having been here for a month, my husband came for a weekend visit and that visit was followed up within days by my parents. We explored Park City together and they gave me a little reprieve from being the sole care provider for a few hours. When it came time to go, my parents decided my mom would stay on another two weeks. It was great having another adult around! We pushed updosing back by one day when my son wasn't feeling quite well, but other than that, we have plodded along (thankfully!) without major event. Our time has been filled with pumpkin painting, pumpkin patch visiting, homeschool, and trips to the library.

My mom left last week and at the start of this week, I started to feel sick...again. I am not one to get sick more than once a year, so feeling run down twice in two months was really disheartening. In a desperate plea for help, I texted my husband that we couldn't wait two more weeks until his next scheduled visit. The next day (I was feeling better, but shhhh, don't tell him), he got in his truck and drove 12 hours to be with us. It was a total surprise for the kids. Best of all, we are together and he got to watch our son hit a milestone in OIT.

Today, we watched our son graduate from liquid solution on to peanut flour. We are at 50mg, which is 20% of a peanut. It looked like an awful lot of peanut flowing out of that capsule into a cup of applesauce...I felt a little panic, to be honest. Other than not liking the flavor (we have since switched to mixing into yogurt with better results), the dosing went perfectly. Peanut flour will take us about 5 weeks, barring reactions or illness, and then.....he eats a PEANUT! Even though we have been geared toward the finish line since the beginning, it's still surreal.

The fact that you can built someone up to be immune to poison is not a new idea, but it's certainly not commonplace. Yet. I write about OIT and tell everyone I meet exactly why we are living in Utah because I hope the fear will eventually dispel and people will realize that doctor-supervised OIT does not kill, but "avoidance" certainly has. Many, many times little lives have been lost while trying to avoid their allergen. It is not a risk I am willing to take. I would rather watch my son after carefully measured doses, increasing at slow intervals, under the care of a doctor so that he can live the rest of his life without fear.

It's my choice to increase my anxiety for the next six months so that when we return home, I don't clench my phone with white knuckles the entire time he is at school. So that when he asks to go to a friend's house, I can let him go without hovering around him. I make this choice now so that I can finally say "Yes!" when he asks for a hot chocolate or a cake pop from Starbucks or eat that cookie the nice person at the bakery tries to hand him. I want to be able to say no to those things because of the sugar...not because it could be the last bite he ever takes. I'm looking forward to that day just as much as he is.

I truly believe you have to get to the mindset where it is scarier to live without trying than it is to dive in (under the careful advice and care of a board-certified allergist, of course). There are parents who will never get there and I get it. I really do. That is the beauty of parenting your own children...you get to decide what is best for your family. I don't judge people who choose not to try a treatment plan just as they shouldn't judge me for doing what I feel is best for us.

Be My Guest

After having been here for a month, my husband came for a weekend visit and that visit was followed up within days by my parents. We explored Park City together and they gave me a little reprieve from being the sole care provider for a few hours. When it came time to go, my parents decided my mom would stay on another two weeks. It was great having another adult around! We pushed updosing back by one day when my son wasn't feeling quite well, but other than that, we have plodded along (thankfully!) without major event. Our time has been filled with pumpkin painting, pumpkin patch visiting, homeschool, and trips to the library.

My mom left last week and at the start of this week, I started to feel sick...again. I am not one to get sick more than once a year, so feeling run down twice in two months was really disheartening. In a desperate plea for help, I texted my husband that we couldn't wait two more weeks until his next scheduled visit. The next day (I was feeling better, but shhhh, don't tell him), he got in his truck and drove 12 hours to be with us. It was a total surprise for the kids. Best of all, we are together and he got to watch our son hit a milestone in OIT.

Today, we watched our son graduate from liquid solution on to peanut flour. We are at 50mg, which is 20% of a peanut. It looked like an awful lot of peanut flowing out of that capsule into a cup of applesauce...I felt a little panic, to be honest. Other than not liking the flavor (we have since switched to mixing into yogurt with better results), the dosing went perfectly. Peanut flour will take us about 5 weeks, barring reactions or illness, and then.....he eats a PEANUT! Even though we have been geared toward the finish line since the beginning, it's still surreal.

The fact that you can built someone up to be immune to poison is not a new idea, but it's certainly not commonplace. Yet. I write about OIT and tell everyone I meet exactly why we are living in Utah because I hope the fear will eventually dispel and people will realize that doctor-supervised OIT does not kill, but "avoidance" certainly has. Many, many times little lives have been lost while trying to avoid their allergen. It is not a risk I am willing to take. I would rather watch my son after carefully measured doses, increasing at slow intervals, under the care of a doctor so that he can live the rest of his life without fear.

It's my choice to increase my anxiety for the next six months so that when we return home, I don't clench my phone with white knuckles the entire time he is at school. So that when he asks to go to a friend's house, I can let him go without hovering around him. I make this choice now so that I can finally say "Yes!" when he asks for a hot chocolate or a cake pop from Starbucks or eat that cookie the nice person at the bakery tries to hand him. I want to be able to say no to those things because of the sugar...not because it could be the last bite he ever takes. I'm looking forward to that day just as much as he is.

I truly believe you have to get to the mindset where it is scarier to live without trying than it is to dive in (under the careful advice and care of a board-certified allergist, of course). There are parents who will never get there and I get it. I really do. That is the beauty of parenting your own children...you get to decide what is best for your family. I don't judge people who choose not to try a treatment plan just as they shouldn't judge me for doing what I feel is best for us.

Apparently Breathing is Essential

It's amazing how much one person can hold their breath. Even more so that they have no idea they are doing it until breathing resumes. I first noticed I was a breath holder when my son completed his first day of OIT. Today, I experienced it again. I decided that since her brother would be eating peanuts, I needed to know for certain if my three-year-old had any tree nut or peanut allergies.

Let me just say, my daughter is a tank. She is the healthiest kid I've ever met. The joke is that she licks a stair rail and my son gets sick. I wish it was far fetched, but it's ridiculously close to truth. The very first time she got sick and began vomiting, I was taken aback. She was about two years old and rather than being lethargic and whiney, she was smiling and chatty between vomiting sessions. Eventually, she fell into a deep sleep for a couple of hours and woke up demanding food and ready to dance. This is a far cry from my son's man-colds.

As we walked into the allergist's office today, my littlest cutie was quite happy to finally have an appointment to herself. She is a natural extrovert and has not liked her brother being the focus. Today she got her wish. She easily hopped onto the scale and climbed up on the exam room table. She smiled and giggled and sang songs. This morning she told me that if she did have a peanut allergy, she would just take a "dose" like her brother. She was absolutely charming and I was hopeful.

We decided to test her for all nuts, peanuts and dairy. One little "Ouch!" and her back had been scratched with minute amounts of the test proteins. The nurse left the room and we put on "Everything is Awesome!" and danced it out. Minute two, one little red spot and the rest of her back was clear. By minute 7, a cluster of hives appeared and my heart sank. When two nurses returned at ten minutes, I was swallowing hard and trying to wrap my head around a life of having two kids with food allergies.

"There are some hives," I pouted. "Oh, it's the histamine control!" said a nurse. DOH! How could I forget??? Slow exhale. The rest of her back looked exactly as it had before the test. Not a red mark, not a scratch, nothing. The complete opposite of her brother...again. I've never been more grateful.

Breathe. In and out. Joy. Elation. Relief. Sweet relief. One child spared. One less thing to worry about.

Our doctor came back in to deliver the amazing news that she tested negative for everything. I'm sure it's not news he gets to give often. We decided she eat her first peanut alongside her brother once he reaches that point in OIT.

It's Friday. It's my 10th wedding anniversary. My son is safer today than yesterday. My daughter has no food allergies. Today is a great day!

Apparently Breathing is Essential

It's amazing how much one person can hold their breath. Even more so that they have no idea they are doing it until breathing resumes. I first noticed I was a breath holder when my son completed his first day of OIT. Today, I experienced it again. I decided that since her brother would be eating peanuts, I needed to know for certain if my three-year-old had any tree nut or peanut allergies.

Let me just say, my daughter is a tank. She is the healthiest kid I've ever met. The joke is that she licks a stair rail and my son gets sick. I wish it was far fetched, but it's ridiculously close to truth. The very first time she got sick and began vomiting, I was taken aback. She was about two years old and rather than being lethargic and whiney, she was smiling and chatty between vomiting sessions. Eventually, she fell into a deep sleep for a couple of hours and woke up demanding food and ready to dance. This is a far cry from my son's man-colds.

As we walked into the allergist's office today, my littlest cutie was quite happy to finally have an appointment to herself. She is a natural extrovert and has not liked her brother being the focus. Today she got her wish. She easily hopped onto the scale and climbed up on the exam room table. She smiled and giggled and sang songs. This morning she told me that if she did have a peanut allergy, she would just take a "dose" like her brother. She was absolutely charming and I was hopeful.

We decided to test her for all nuts, peanuts and dairy. One little "Ouch!" and her back had been scratched with minute amounts of the test proteins. The nurse left the room and we put on "Everything is Awesome!" and danced it out. Minute two, one little red spot and the rest of her back was clear. By minute 7, a cluster of hives appeared and my heart sank. When two nurses returned at ten minutes, I was swallowing hard and trying to wrap my head around a life of having two kids with food allergies.

"There are some hives," I pouted. "Oh, it's the histamine control!" said a nurse. DOH! How could I forget??? Slow exhale. The rest of her back looked exactly as it had before the test. Not a red mark, not a scratch, nothing. The complete opposite of her brother...again. I've never been more grateful.

Breathe. In and out. Joy. Elation. Relief. Sweet relief. One child spared. One less thing to worry about.

Our doctor came back in to deliver the amazing news that she tested negative for everything. I'm sure it's not news he gets to give often. We decided she eat her first peanut alongside her brother once he reaches that point in OIT.

It's Friday. It's my 10th wedding anniversary. My son is safer today than yesterday. My daughter has no food allergies. Today is a great day!

Coasting

What do you do when everything is going smoothly? You relax, but stay aware. You revel in your peacefulness while knowing it can change and even if it does, it really will be ok. Tomorrow, my husband visits for three days. It will be the first time we have seen him since August and we won't see him again until mid-November. While he has been away working, we carry on with our new normal. 

We wake up at some God-awful hour after I inevitably go to bed too late. The kids eat cereal while I make some coffee for myself and eggs for them. On perfect days, we start school in the morning.  Most days, we start after lunch. My daughter is in preschool and dance because she is having the hardest time missing out on the social aspect of being home. My son is happy to have mommy time when she is off at her activities.   

My idea of what I need in life has changed. An apartment is not ideal, but I have learned that a smaller place is easier to keep clean. Less stuff means not having to constantly pick up. My kids have been satisfied with legos, books and their iPads and don't miss the toys we didn't bring and don't pull out most of the toys we did bring. We keep the television off most of the time. 

Other OIT families have welcomed us with open arms. Even when someone says something is safe and I can trust that it is, no one bats an eye when I read the label anyway. My ways that were considered "helicopter mom" in Arizona are completely understood here. They know it isn't about being overprotective about mundane things, it's about being hyper-vigilant because the allergy has forced me to accept this role. We compare emergency medicine storage. We talk about reactions our kids have had. We talk about the hope we feel for our children's future after OIT and how grateful we are that Dr. Jones couldn't just ignore that this treatment exists. How, not only does he offer it, but he is constantly making it better and is totally available for all our sometimes neurotic calls and texts. I walked straight into a group we call our OIT family. We would all choose not to have to be here if we could, that our kids were never saddled with life-threatening food allergies, but since that is what we were dealt, we get through it together. 

One month has flown by. At best, we are back home in another five. Any way you look at it, our time here will have forever changed us as a family. We will leave Utah stronger and safer.

Coasting

What do you do when everything is going smoothly? You relax, but stay aware. You revel in your peacefulness while knowing it can change and even if it does, it really will be ok. Tomorrow, my husband visits for three days. It will be the first time we have seen him since August and we won't see him again until mid-November. While he has been away working, we carry on with our new normal. 

We wake up at some God-awful hour after I inevitably go to bed too late. The kids eat cereal while I make some coffee for myself and eggs for them. On perfect days, we start school in the morning.  Most days, we start after lunch. My daughter is in preschool and dance because she is having the hardest time missing out on the social aspect of being home. My son is happy to have mommy time when she is off at her activities.   

My idea of what I need in life has changed. An apartment is not ideal, but I have learned that a smaller place is easier to keep clean. Less stuff means not having to constantly pick up. My kids have been satisfied with legos, books and their iPads and don't miss the toys we didn't bring and don't pull out most of the toys we did bring. We keep the television off most of the time. 

Other OIT families have welcomed us with open arms. Even when someone says something is safe and I can trust that it is, no one bats an eye when I read the label anyway. My ways that were considered "helicopter mom" in Arizona are completely understood here. They know it isn't about being overprotective about mundane things, it's about being hyper-vigilant because the allergy has forced me to accept this role. We compare emergency medicine storage. We talk about reactions our kids have had. We talk about the hope we feel for our children's future after OIT and how grateful we are that Dr. Jones couldn't just ignore that this treatment exists. How, not only does he offer it, but he is constantly making it better and is totally available for all our sometimes neurotic calls and texts. I walked straight into a group we call our OIT family. We would all choose not to have to be here if we could, that our kids were never saddled with life-threatening food allergies, but since that is what we were dealt, we get through it together. 

One month has flown by. At best, we are back home in another five. Any way you look at it, our time here will have forever changed us as a family. We will leave Utah stronger and safer.

Mindf**k

Some days, this whole deal is one giant game, messing with my head. With the exception of our first real reaction, which ended up being a positive, and one trip to the grocery store, this week was pretty awesome. It was the kind of week I had expected, unlike the week prior where we were all sick. Last night, in fact, I did something rare. I went out. I trusted a babysitter with my kids (by "trusted" I mean that she was someone used by a friend of mine whose children also have food allergies and I spent the entire night texting the sitter, to the point where she began copy and pasting, "yep, they're doing great.") and went out for a friend's birthday. Until 2:30 am.  Truly, I am too old for that, evidenced by my all day recovery process. I took it easy, mostly just exhausted since we were up by 6:30, and the kids and I walked across the street to an outdoor mall where they played on the playground, then we went to lunch and did a little shopping. In total, we spent 4 hours walking around outside on a beautiful day. Today was perfect.

I really can't explain what happened next.  My thought process was to take a nice, relaxing bath and go to bed early. In reality, I sobbed in the tub to three songs on repeat.  (Home by Philip Phillips, All of Me by John Legend and A Life That's Good by the cast of Nashville, in case you are curious.) As much as I told myself I would not feel guilty about a night out, I think I did. Not for my kids' sake, but for my husband's. He has had his world tilted upside down with his family gone, and since our house sold, he's temporarily living with his mom. After moving more times than I can count, I can truthfully say it is easier to leave than to be the one left behind. I feel for him.

Tuesday will be three weeks since my husband left and went back to Arizona. In October, we will celebrate our 10 year wedding anniversary and in all that time, until three weeks ago, we had only spent three nights apart. This is a big change for us now and when I return home with the kids, there will be change again as we look for a new home. Add to that running two businesses, one of which is new and still trying to get off the group, while supporting a family he doesn't even see.

We all have a role to play in this OIT journey and his is tough, too, even if he isn't the one physically here and dealing with the day-to-day.  I cried tonight because I miss him. I cried because he wants to be here and can't.

Every tear, I would cry one hundred times over to get our son to a point where he can live without fear of coming into contact with a common food that could kill him. I am grateful and say a prayer of thanks every single night that we have this opportunity to make my son's life safer.

I'm even thankful for his first reaction.

You already know I'm crazy, so just hear me out on this... 15 minutes after his night dose, his third since we doubled it on Monday, he began clearing his throat and sighing deeply. A couple of little hives popped up on his face. I texted Dr. Jones and let him know and he immediately responded that if anything else happened, to call him right away. I gave my son cold apple juice which seemed to help his throat and within an hour, all symptoms were gone without any action from me. I let him go to sleep and advised the doctor all was well.  None of his doses after that yielded such excitement, but that is when it hit me: we are at roughly 1/200 of a peanut. My kid is SUPER allergic.  His body hated it, but overcame. Every day we are doing this, he is SAFER.

All things considered, I wouldn't change a thing. Some days are going to be awesome, like today and all the days this week, and some days are going to be so hard I want to quit. But I won't quit. There's a sweet six year old depending on me to make this happen for him. He wants a peanut party when he gets home and I'll be damned, he's earned it. We all have.



*Sorry for going back to language there in the title, but my f**k posts seem to do 200% better than the others. Go figure.  :)