2.5ml of egg and 2.5ml of dairy went smooth as ever.
Today, we up dosed to 3ml and she passed with flying colors! Way to go, Josie!
Stay strong, beautiful! You are doing amazing things! We are so proud of you.
May 9, 2019 Texan Allergy Arlington office:
My shining star did AMAZING! I am so proud of her! With grace and peace and prayers, we made it through this VERY long day. I made it through. Holy cow! How grateful we are for Bobby’s patience and calm. For he is the glue that holds us all together. The voice to keep us calm. The still we need when minds are racing. He so graciously took her to the appointment himself, while I drove around Austin with Juliette.
We found a Target. A new Target. A nice Target. And I filled the cart full of fun goodies for Josie. Something to reward her with for completing an entire day, 8 hours, in an allergy office literally eating the very thing that almost killed her two years ago. My girl has strength, ya’ll. She is mine, no doubt! She has sass, wonder and is sweeter than pie. She is full of love and happiness and kind-hearted in every way. So well mannered and polite. So loving and brave. She is Josie. And I am so proud. This may be a small start but it’s a journey that will be big! We are here. We started. We finished the day. We did it! WE DID IT! We ARE doing it. I cannot believe it. I hear Freedom…
…anything to give our sweet Josie a normal life when she gets older…anything.
Trips to Austin every week is worth it. It may be an all day event and 4 hours in the car each way but there’s no price tag on her freedom. There isn’t. We’d travel thousands of miles if we had to. Car, airplane, train…whatever. Anything for her.
At the end of the day we reached 5 doses. A total of 2.5ml of egg and 2.5ml of milk. Freaking phenomenal! She complained of stomach pain so we stopped and went home with that dose (to give for a week). It was incredible to walk out of there with such results. It was mind blowing. It was a high of happiness knowing that she is doing this. She is a trooper. My girl! Way to go, Josie!
That morning when we left the hotel, I was clouded. Scared. Anxious. Mind racing in a million different ways. Did I have this? Did I have that? The hotel was walking distance if needed. Where was the closest hospital? Was 4 Epi-pens enough if we needed to? Truthfully? After they got check in at the appointment and I walked out of that office leaving them, I left it to God. This was His to handle. I cleared my mind and trusted in Him to guide her through. To put His hand on her shoulder and give her strength to do this. He is ever so amazing. Oh dear God, thank you for this ever-so-kind, full-of-life, free-spirited child. She is truly a gift and we thank You for her. She is absolutely precious in every way.
“The strength of a mother is second to none. Even when she is in times of stress, when she is fighting her own demons, when she is beyond exhausted both mentally and physically nothing will stop her from finding strength she needs to do for her children what she needs to get done.”
When my children remember their childhood, I want only for them to remember that their Mother gave it her all. She worried too much, she failed at times and she did not always get it right…but she tried her hardest to teach them about kindness, love, compassion and honesty. Even if she had to learn it from her own mistakes she loved them enough to keep going, even when things seemed hopeless, even when life knocked her down. I want them to remember me as the Woman who always got back up.
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: