A Second Attempt at OIT:

So Josie’s first day of OIT was a big, fat, fail…

And I’m not going to lie…it was completely all my fault. Why? Because I’m me. Me as in the anxious, scared, get-these-flash-backs-of-her-dying-in-my-arms PTSD moments. My anxiety was so heightened at her appointment, I almost felt like I was going to die. I took a glance at my FitBit to see my heart rate and it was above 120. That was at resting. Lord. I look back now and am so angry at myself for ruining this for her. This time it’s going to be so much different…

Well, with that being said, our sweet girl is starting her first day of OIT on May 9th! (If we can get this illness out of our house!) This time we’re doing things a little differently. ..

Daddy is going to take her. As most know he’s much more relaxed and she (I think) is more drawn to him. I booked a hotel the day before and the day after only 0.2 miles away for if they need me or I want to come there. I could walk there if I wanted to.

But for me to physically be there? No way! I am no good for her. My husband has told me, the allergist knows and that entire office probably thinks I’m nuts (no pun intended). But that’s okay. I am. I’ll admit it. I am terrified of feeding my child small lethal doses of a food that could potentially kill her. But on the upside there are thousands of positive stories and the success rates are phenomenal. The decision is a no brainer. We’ll do anything for Josie.

Of course with any doctors appointment that I cannot attend, I will probably pace the hotel room with my 19-month-old in hopes to not hear my phone ring. The first appointment can take anywhere between 4-8+ hours. Not a trip that I want to be involved in because I cannot imagine being calm enough for her.

We’ve made some pretty huge steps since that last attempt. Josie now takes Zyrtec liquid in a medicine cup. WHICH IS HUGE! She wouldn’t touch any medicine, at all, what-so-ever (without throwing it up) and because I’m sure her PTSD from past reactions/hospital visits/ICU, etc. But what she absolutely WON’T take is anything in a syringe. KEEP ANY AND ALL AWAY FROM HER. It terrifies her! Like to the point of freak out, throw yourself on the floor, type of freak out. So when we attempt again this time, they will NEED to put their syringe (they used on her last time), in a medicine cup before even entering the room and I’m willing to bet she’ll down it like a champ.

She seems to think she will go to the doctor once and walk out of there eating ice cream. Children have no sense of time. Since our last visit we talk about that doctor a lot. In fact, we talk him UP a lot. We finally convinced her that she can eat what baby sister does if she will go and see this doctor.

Josie: “Mama, can I go see Dr. S so I can have him give me medicine and then I can go eat ice cream with you and daddy and baby sister, please mama, please?” How precious is that? And bless her heart! It’s literally the small things in life we take for granted. She has no clue on the amount time this will take to be “desensitized” enough for her to enjoy that ice cream cone one day. Thank goodness we’re doing egg and milk at the same time. If that goes well, we’ll move to tree nuts and then peanuts (together or separate, we don’t know yet). Then try to tackle the whole chicken thing…

This post is short and sweet. Mainly a reach out to those friends and family who have prayed for Josie before, to please, please, please keep us (Josie) in your positive thoughts and prayers. Please pray that this works for her. I really do have good faith in this allergist and I am confident he will change our lives forever. And if that being the case, I will never know how to repay him for that. It will be priceless!

Read past experience here:

Josie’s Journey into OIT-Day 1, The Consultation

Reflection

Flashback: The Day Josie Became My Allergic Child

Food Allergies Suck!

Food Allergies

This is Our Lifestyle

 

Happy Easter!

We were discharged from the hospital on the Saturday before Easter. I thought for sure that we’d spend yet another holiday in the hospital with Juliette. I was determined to go home and have Easter with our little family that next morning. Plus, Easter is now a difficult day for me emotionally, because last year my grandma passed away on Easter. It may have been a different actual date but Easter will never be the same. Especially since she had always made Easter so special for my sister and I as we were growing up.

As soon as Juliette vomited three times Saturday night, I almost took her back in the emergency room on Easter Sunday morning (2:30am). But the doctor who quickly called me back, after I paged him in the middle of the night, reminded me to calm down and be patient and told me that this is all expected and part of post-concussion syndrome and give it time. As long as her neurological assessment was fine, then there is no need to worry. And literally after she woke up and started vomiting, she saw the Easter baskets on my bedroom floor and wanted down to go play with them. So she was most definitely fine in that regard.

Juliette hasn’t vomited since that night and she is on the mend, in my opinion. She’s obviously not old enough to tell us that her vision is blurry, or if she feels dizzy, of if she’s nauseous, or that there is too much stimulation in the room for her little brain. But she does put her fingers in her ears when it is, in fact, too loud or too much for her and begins to get a little on the fussy side. Sometimes in the car she doesn’t like my music on. She likes the silence. But by the Grace of the good Lord, she is healing and doing very well and to me, seems like she’s back to her self. She’s a toddler on the go. She’s back to running and falling, she trips, she falls and she still bangs her head on tables that are her height when she stands under them. I try not to freak out and worry about her “sensitive head”. Because it’s really not all that sensitive. I’m just trying to heal too from all this trauma lately and I try the best I can to back off and give her space. But I also try my best to follow her around if it’s on solid hard ground, but even that, on top of most mom things I do, gets exhausting. I have to trust that she is stronger then I give her credit for and trust that she will be okay, even if she did fall. God gave us one strong little girl. She is a fighter.

Easter was great this year besides both kids were sick with colds (aren’t we always sick on events and holidays?), we had to send Bobby’s dad home early because he was a disappointment (we both said that we should have known better). We spent most of Bobby’s long swap home in the hospital, worried about something constantly, from the health of us four, to his blood pressure, the hospital bills never ending, our taxes were due, the escrow in this community is outrageous, I missed a lot of work (extra pick up shifts I could have potentially worked), and the allergy season is absolutely horrid this year in Texas, which is making both kids miserable on a day to day basis. What is going on with Texas weather ya’ll? One day it’s 85 degrees and we’re playing in the hose/splash pad and the next day it’s 52 degrees, gloomy and cold. And it’s been this way-on and off weather mess for months and months. I always thought Michigan was bad. But this is 200% worse! I am literally ready for hot, desert, non-stop heat and sun for the next few months like Texas is supposed to be. I’m ready for pool days and ready to meet new people. I’m ready to get out of this house!

Although we were up all night long Saturday cleaning up vomit (twice in her crib and once in our bed), we still managed to play Easter bunny and throw together Easter baskets and hide eggs all around the front and back yard. With the help of Jennifer we added some Matilda Jane and the help of Shelby, we added in some Usborne Books. And Liz came by and hid even more eggs outside our house with presents for the girls which was so sweet. It was bittersweet. Just to have my husband home, despite all the recent trauma lately, we made the best of it, took a ton of photos and then rested (all of us) the rest of the day.

I can’t speak for my husband, but the worry about your child, once you leave the hospital, is exhausting and consuming. He sometimes still laughs at me because I still have a baby monitor in my 4-year-olds room. I carry two baby monitors with me around the house when they’re asleep. I wake at every peep, cough, whine and fall off the bed (yes-that’s happened once so far and just a few days after Juliette got out of the hospital with a head injury). Just the other night I could hear Juliette breathing funny so I went into her room and got down close and it just was her allergies and nose sounded stuffy.

My girls started off with a cold (or so I think it was that), and it’s still lingering. It’s been about two months or longer now. It’s just strictly nasal related. No other symptoms. Runny nose, that’s it. And it can get annoying, especially for Josie who keeps asking for tissues until her nose is raw. I’m praying to God no cough sets in because that would mean we’d have to reschedule/cancel OIT again. Yes, we’re attempting to try OIT again but more on that later in another post.

As I sit with her, I remember those days as a kid being miserable from seasonal allergies. Bobby and I both suffered in Michigan. As neighbors, he would come to my house and beg me for some Claritin. I was that kid that missed picture day and make up picture day a lot because of my allergies. I woke up with eyes crusted shut and swollen. My eyes itched constantly, I sneezed a ton and ultimately, in my adult years developed chronic sinusitis that required sinus surgery in January 2017 (the BEST decision I ever made). I just look at Josie as she suffers and pray to God that she’ll grow out of this or that there is some type of relief for this misery. Or that the weather would just make a decision and stick with it already.

Josie’s Journey into OIT: Day 1-The Consultation

Today we had our consultation with (another) new allergist for Josie…

It was a 4 hour drive (technically 3 hours) to Austin from Houston…

But after two diaper blowouts in the carseat, several pee stops for Josie and getting gas and coffee, we finally made it. Everyone was a little over it before it even began. It was a long ride.

My nerves are shot. My girl screamed through getting her weight, height and VS (absolutely refused). The doctor was very kind and patient and spent over an hour with us as I cried on and off about a plan and how much guilt I have from her allergies and near death reactions. We are set to start OIT August 14th. I’m totally freaking out. I am so happy with this doctor, but I am absolutely terrified and anxious for the pending thought of actually doing this. I don’t know how I’m going to rest easy up until this day. I need a good distraction. So friends that are local, please help me with this. Y’all that know me, KNOW I’m anxious all the time. But I REALLY need y’all more then ever right now. I’m afraid I’m going to talk myself out of doing this because of my own fears and panic.

THE PLAN: We are doing BOTH egg and dairy at once. The younger in age, the better outcomes. It’s just getting this girl to cooperate and stick to the plan that will be the challenge. How on Earth am I going to get a toddler who hates food to eat this dose for me daily?

BAD NEWS: He did say how much he’s concerned about her numbers. And said numerous times that “her numbers are high. Really high” 😒. But he has a good feeling about this and I’m going to try my best to trust him with my baby.

The first appointment is at 8am. It’s a 6 hour appointment. The waking up early, the drive and the time spent is just a teeny tiny sacrifice we’re willing to make to help our girl.

Let’s remember: THIS IS NOT A CURE. Especially with her numbers, this only helps her NOT to develop an anaphylactic reaction and/or to (in hopes) desensitize her from these foods. But the catch? She’d have to eat them every single day for the rest of her life to maintain that desensitization. Eventually she’d be able to eat these foods but not in high doses like mama can eat an entire cake in one sitting. πŸ˜‚ (I’m trying to be funny here although I feel like crying). I just want my girl to have the peace of mind that time is on her side if she ever bites into that food.

The plan to tackle peanuts and tree nuts is down the road. Those levels are just too high. And dairy and egg are in everything! I think it’s smart to start there.

WHAT TO EXPECT: This process of desensitization, can take anywhere from 6-12+ months JUST to be able to bite and not react. And all the work is on me. I have to make sure she stays on her doses and sticks to her regimen. And y’all know how I am with regimens. If I’m good at anything, it’s that.

We will travel to Austin every two weeks (to up-dose). At that appointment, they will give her an increase from the two weeks prior but ONLY if I’ve given her the allergen in that small dose at home every day (full 14 days) leading up to that next up-dose (increase in allergen).

I can’t believe we are doing this y’all! I can’t believe it!

I know so many people will ask. And so many have reached out with good vibes and prayers. I appreciate you all. Thank you to those who’ve reached out and those continuing to pray for our Josie girl. I have a good feeling she’s going to be in good hands. And we are both willing to do anything to get this to work.

We’d like to track our journey. And when I say “our”, it’s because it’s not just Josie’s. Although the end result is for her to have a more normal life but also for her to have a more normal mom. I can admit that I had anxiety before kids. But after kids it got worse. But then having an allergy child made it 100x worse. So if she can get well, then so can I. We can both breathe together. I have faith this doctor is going to one day give us all what we’ve been waiting for. This is all in God’s hands.

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