Russian Roulette

I barely slept a wink last night.

Logan had his last dose at 7:30 p.m., which technically was actually only 1/3 of the  actual dose. He coughed a few times, got a stomach ache, and mentioned once his mouth was a little itchy but nothing escalated enough where I felt like Epi was needed. Thank God. 2x in one day is more than enough for me!

He woke up coughing in the middle of the night and had an upset stomach so I brought him into bed with me and basically listened to the air going in and out of his chest for the remainder of the night.

Will this ever get easier?

I sure hope so.

This morning all of the kids were up at 6 so I let them play as I watched each second tick by until the moment I was dreading: 7:30 a.m. How can 12 hours go by so fast?

Can I just take a minute and explain the anxiety that comes with dosing?

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I take out his solution from the fridge and I stare at it for a minute. It looks so harmless just sitting there in the glass jar. I shake it a few times and take a deep breath. I find the syringe and grasp it in my hand, willing it to revolt in some way so that I don’t have to follow through. I grab our stack of OIT forms and check, double check, and triple check the amount I am supposed to dose him with. He is currently getting 1 mg/mL. 3mL total.

I slowly insert the syringe and withdraw the solution making sure not to go over the line marked 3mL.

I pack up the solution and place it back in the fridge, lest I be *that* mom who accidentally leaves it out and spoils a 2 week supply.

I call Logan over in my best nonchalant,  ”hey dude, this is so normal and casual, no big deal whatsoever” voice.

He walks over and we look at one another.

The syringe in my hand.

The weight of it growing by the second.

We both know what it is.

It is poison.

Poison I have told him to absolutely avoid at all costs for the last 6 years of his life.

Poison I have feared he might accidentally come into contact with at some point.

Poison that swelled up his sweet face and started closing his airway as we sat in Olive Garden when he was 18 months old.

These memories haunt me.

And now?

I have loaded said poison into a harmless looking syringe and I am preparing to hand it to him.

To ask this 6 year old son of mine to trust me, and drink the very thing I told him would make him very sick.

The very thing that *did* make him seriously ill less than 24 hours before.

Do you know what that feels like?

It feels like I take out a gun, load a single bullet in it, and then hand the gun to my child. I ask him to place it between his lips and pull the trigger. Praying, behind a fake comforting smile,  that the chamber fired is blank.

I know that might seem too offensive or graphic to some but that is the best way I can communicate to you the emotion coursing though my veins at dose time.

I do this 2 times a day. 12 hours apart.

I am sure some of you reading this are thinking “how then can you consent to this treatment? Isn’t the risk too great?”

Of course the risk is great! My child’s life in on the line.

However, the truth is, his life is on the line every single bite of food he takes. Forever.

And so if by doing OIT I can help reduce his reactions in the future, I am willing to do just about anything.

This is the life of an allergy mom.

We make hard decisions in the face of uncertain odds and pray we don’t end up doing more harm than good.

You know what keeps me going?

Logan.

Had he complained once yesterday and asked us to please stop, we absolutely would have. Instead, he encouraged *us*. He is mature beyond his years for sure and I know that is probably because he has had to tackle obstacles higher and far more challenging than many grown adults. His allergies have given him a heart that is strong, compassionate, and empathetic. Simply put, his allergies have been a gift to our family in many ways. Even though it certainly doesn’t always feel that way…

After yesterday’s traumatizing events, we agreed to take Logan to Target today to let him pick out something for himself. Some may call this bribery, but I like to think of it as appropriate compensation for offering your body up to medical research. Heehee. As we were driving there, Logan was admiring his Spiderman backpack that holds his allergy and asthma meds. Our conversation went like this:

Logan: I sure do like my Spiderman backpack. I think it looks so cool and it helps me so much. When I grow up into a man I won’t be able to wear it anymore because it will be too small.

Me: I think you’re right. It might not fit very well in a few years.

Logan: Well, that is okay. I will just buy a bigger one. Do you think I can keep this Spiderman one too and take it with me when I grow up and move out?

Me: Sure buddy. But why would you want a backpack that is too small?

Logan: Because it is so special to me. It reminds me that you love me so much and you always want to keep me safe by making sure I have my medicine with me in case I have a reaction.

Me: (fighting back the massive elephant tears filling my eyes) I think that is a great idea, Logan. And you’re right. I love you so very much.

Do you see, friends?

This life we have been dealt is hard. No doubt. But through every single trial, I am constantly reminded of the bigger picture. I am encouraged that we even have options like OIT these days. And even if it doesn’t work for Logan, at least we tried. His life is worth it.

The best news of all? God is still good.

No.matter.what.

colossian117

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Day 1

I have noticed that my desire for blogging tends to come in waves. There are simply times in my life when I am too busy, too tired, or too introspective and desire privacy to a degree in which I don’t feel like writing. Then there are times like now. Times in which I am overwhelmed and emotions wash over me without warning. Writing has always been a way for me to process issues that would otherwise consume my thoughts.

It has been over a year since I last wrote and many things have happened in that time. Too much certainly to cover in the confines of this white space before me.

And so, I will simply start from where we are here and now.

After much prayer and consideration, Mike and I decided it was time to attempt Oral Immunotherapy treatment for Logan’s allergies. Our doctor recommended treating egg first because his levels are a little lower than peanut and it would open up a wide variety of dietary options if he managed to make it to maintenance phase. If you have no idea what OIT even entails, I highly recommend this recent article by D Magazine.

My hope through blogging openly and honestly about our OIT journey is mostly selfish: to help filter out the overwhelming emotions so they don’t build up within me. Even more than that though, I would love to allow other allergy moms into our day-to-day life so that if they are ever faced with the decision about participating in OIT, they will feel well informed and possibly even encouraged.

Yesterday was Day 1.

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This day, friends? It nearly broke me. I watched as Logan took each escalating dose (19 total) without issue. My heart leapt with joy for small steps of success. My sweet boy made it all the way to the last dose and within minutes he was in anaphylaxis. His peak flows dropped drastically and his BP/HR plummeted. He was given a shot of Epi, steroids, and a breathing treatment. He started to perk up and my heart breathed a sigh of relief.

Within an hour, he had a bi-phasic anaphylactic reaction. Rare from what the nurses told us. His BP was so low, they thought the machine was broken. His lungs were tight and the color left his sweet face. He got another shot of Epi. but his BP wouldn’t come up so they put him flat on his back with his feet up in the air while he took another breathing treatment.

He is finally stable. Thank you, Jesus. Where do we go from here? We have tough decisions to make about continuing treatment. They bumped his dosing for home in half which extends his treatment significantly.

Only a broken, weary allergy mom who knows the risk of NOT treating the food allergy would ever be crazy enough to come back after a day like today.

I am incredibly thankful that He walks before me. I am not alone. He has Logan’s life and future in His hands. I covet your prayers during this time. I certainly felt them today. They enveloped me when the brokenness sought to consume.

We will fight for Logan regardless of what comes our way. I don’t know what OIT will look like in the future for us, but I do know that he is the most incredibly resilient, amazing, BRAVE kid I have ever seen. With each dose, he smiled and said “thank you”…with each shot of Epi he encouraged the nurse that “it didn’t hurt too bad”…and when she asked if he wanted to continue coming he grinned and said “yes!”

I look up to this courageous kid of mine. He teaches me so much every day. And today? He taught me faith in ways I’ve never known.

So as my broken heart re-plays every thing I saw my son go through today, I will simply say Praise Jesus. He is my portion. On days like today when I feel completely empty and forevermore.

rock

 

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Garden Wrap-Up

 

Our homeschool garden ended up being way more successful than we ever could have hoped for! Especially considering my inexperience and the crazy mix of weather we got this Spring/Summer. We literally had jalapeños and tomatoes coming out of our ears! The kale, cilantro, and basil flourished as did our cute mini carrots. It has been so fun experiencing this for the first time alongside the kids. We had a few busts, but overall we were incredibly surprised by how well it thrived. At least we can always say we had one good year! Ha! I think the kids favorite part (aside from harvesting) was investigating the multitude of bugs that decided to camp out in our garden. Needless to say, it always lead to the question of good bugs vs. bad bugs. Logan is our resident bug expert and he takes his job very seriously!

Due to the copious amounts of veggies harvested, we decided to start juicing. Mike researched like crazy and finally settled on an Omega brand. It has been amazing! The kids have been eager to try our various concoctions and it has definitely helped with many of the problems I have digesting veggies in their whole form. Now if I could just find some affordable, ergonomic knives that don’t aggravate my EDS as much.

Now that the heat is overpowering each day, we have basically harvested what we can and started planning for the Fall. One thing is for certain, we are learning that a gardener’s job is never done! I am thankful for such a hands-on learning experience that we can do together as a family. Here is to many more adventures in gardening ahead…

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harvest of the day

harvest of the day

Logan's find of the day

Logan’s find of the day

fresh from the garden

fresh from the garden

happy helper

happy helper

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Daily Life: Pictorial

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First Day of School

This week is going to be miserably hot which marks the beginning of many more weeks of misery to come. I decided to go ahead and start school now so we can have more play time when the nicer weather hits. We will also be taking 2 weeks off when we travel to Disney in September (squee!!!) so the more we can squeeze in before the trip-o-a-lifetime, the better!

Since I decided a tad last minute to get the wheels in motion for another year of homeschooling, I spent the better part of Sunday after church getting everything organized and planned out for this week. Mike was such a huge help juggling the kids and putting together the hutch for one of the desks. We were up until midnight, but we managed to get half of the room ready for today. Good enough!

apparently watching mommy work on the school room is exhausting

apparently watching mommy work on the school room is exhausting

the half of the room that is ready!

the half of the room that is ready!

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Logan Jett is officially a Kindergartner! He literally jumped out of bed this morning and shouted “AM I KINDERGARTENER NOW??” After his hunch was confirmed, he proceeded to squeal with delight to celebrate his new rite of passage. Love that kid and his booming enthusiasm!

handwriting practice

handwriting practice

Lucas is now the big man on campus as he starts 1st grade this year. He is most excited about having his own desk thanks to the recent homeschool room makeover.

a few of the goodies Lucas and I get to work through this year

a few of the goodies Lucas and I get to work through this year

Brielle is also doing a few activities during our school time so Lucas likes to tell everyone that she is doing Pre-K and Charlotte is in preschool. Ha! I guess if you count scribbling on a paper while we do our character trait study, dismantling any project we are working on, stealing game pieces and hiding them, or running around shouting demands at any one who will listen, then I guess Charlee-girl might be doing “school” as well.

I love Brielle's little drawings of people

I love Brielle’s little drawings of people

I have to admit, it is the end of the day and I am absolutely drained, but today was SO worth it. I had such a fun morning with the kids and we were able to get our work done without any major rebellion or melt down issues. I thoroughly enjoyed our curriculum and can’t wait to dive in further! I pray that I will continue to have energy at least during the weekdays so that I can enjoy my school time with the kids and look forward to more rest during the weekends. We celebrated our first day of school with pizza delivered hot to the door (no cooking for me, yay!) and cupcakes that we made for Christina for her birthday. A yummy way to end a great day.

Swim lessons start up tomorrow so we will see how the juggling act goes. Hopefully we can finish our lessons early before we go to the pool because I know for certain we will ALL be ready for a nap by the time we get home.

Here are a few pictures from today:

Can you spot the lefty? Working on their character trait coloring sheet.

Can you spot the lefty? Working on their character trait coloring sheets.

Lucas having his first quiet time using a devotional.

Lucas having his first quiet time using a devotional.

Lucas' first entry in his Bible notebook. He wrote the first sentence and then dictated what he wanted me to write below.

Lucas’ first entry in his Bible notebook. He wrote the first sentence and then dictated what he wanted me to write below.

I know I have said this before, but I am incredibly thankful that I have the privilege and honor of homeschooling our children. It is hard, overwhelming, and at times I question my ability (and sanity!), but overall I LOVE it. I am deeply humbled that Mike entrusts me with such an enormous responsibility. I take my “job” very seriously and I can’t wait to see what our next year of adventures in homeschooling will look like! By the goodness and grace of God alone, we will make it through!

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