We’ve had quite the roller coaster of weekends.
AK joined us for Annabelle’s third trip, second reading from Patch Testing, Friday afternoon. He doesn’t usually have the time to join us for doctors appointments, so it was a relief and helpful for him to see what I am juggling each and every time we make a trip to the hospital. Last week alone, Annabelle saw seven doctors. To say she has the routine down is an understatement. As soon as she walked thru the doors of the office Friday afternoon, she marched down the hall chanting “Bubbles! Bubbles!”, Hey at least now she’s associating a hospital with bubbles and not needles – I will take it… and give the kid some bubbles, STAT!
Dr. Maples joined us very soon after we finished with the basic height, weight, BP, Temp, etc. She did the final reading of the Patch Test and then we discussed what our next steps would be.
While avoiding the top foods we have tested that came back positive for an allergy, in addition to the most common offenders for EoE – we will begin introducing foods into Annabelle’s diet. EXTREMELY slowly. Dr. Maples was very happy to hear about the game plan I decided on with Dr. Konikoff and she offered advice on which foods we should begin with and then gave pointers on things to look out for as we move forward.
If we start seeing any signs of a flare or EoE relapse, we will stop the food immediately and begin our EoE Treatment Plan that we have all agreed on. I will continue to keep a journal daily on how Annabelle is handling the food and what things are changing as we introduce more and more. Once we have a handful of foods that all appear to be safe and is in Annabelle’s diet without any reactions, then we will scope again and perform biopsy’s of her full GI tract. Hopefully we will be able to get 5-6 foods before we do another scope, at least that is my goal. This approach can burn us terribly though, because if there are 5 foods in Annabelle’s diet and her scope is not clear – we have to remove all foods and start from scratch, scoping between each and every food. So asking for too many foods and scoping between each one – is a tough fine line of a balance to choose, but I believe AK and I are becoming skilled enough at seeing signs of a flare that we will handle this process very cautiously and pray for the best for Annabelle’s sake.
We decided to begin with Sweet Potatoes. After two-three weeks, we will introduce another food (I think we’ve decided apples will be next).
From an allergy stand point, we will completely avoid: Milk, Beef (anything from a cow), Soy, Oat, Wheat, Rice (and a couple others, I cannot think right now..)
EoE most common triggers that we will also avoid are: Milk, Egg, Peanut, Tree Nut, Soy, Wheat, Fish & Shellfish.
So between those two lists of foods that we cannot trial, we are left with a lot of options for organic produce and a couple meats (turkey, chicken, etc). Cooking will be difficult without being able to use any milk/egg/soy/wheat/rice products.. that makes it harder for flours, ingredients, anything baked, absolutely anything pre-prepared, etc. I will get better at it I know.. and heck, Annabelle will likely have the healthiest diet of all of us by the end of this!
When we left the hospital Friday afternoon, we loaded the car and told the girls that we had a big big surprise for them.
My grandmother has threatened/almost darn near succeeded in purchasing a room for my family at Great Wolf Lodge on more occasions than I can count. I always, always decline and beg her to cancel the reservation – I do not like accepting gifts, and to be honest, I was really nervous about taking Annabelle to such a public place. This time however, Grammy begged me to take the girls somewhere fun – against my own will, but for the girls to be able to run, laugh and play and enjoy themselves. We didn’t have plans for the weekend.. and Annabelle had been in the car riding to and from Norfolk so many times this week, that she did deserve a break. Madelynne on the other hand was begging for an opportunity to cut loose and enjoy time with the family. She deserves it more than any of us, she has really been thru a tough time lately. I agreed to stay at Great Wolf, and the closer we drove towards the resort – the more excited and giddy I began to feel myself getting! I couldn’t wait to see the smiles on my girls faces, just the anticipation is beyond words at how happy it makes my heart.
We arrived and I woke Mady up. She didn’t have a clue where we were but she knew it was going to be a lot of fun.. she trusted me.. we found our room and both girls squealed with excitement! Their bunk beds were hidden in a cave inside our bedroom.. the room grammy booked for us was the ‘Wolf Den’ and it was SOOO COOL!! I directed Mady to the balcony and she looked outside at the slides and outdoor pool, her little face was priceless as she looked up at me “Mommy! Is that where we are going?! Is this where we live now?!”
AK and Mady spent the afternoon chasing each other and Mady challenged AK to ride with HER down the biggest slides she could find, I was shocked at how much of a dare-devil she is! I spent the afternoon carrying Annabelle in my arms. She didn’t want to get down.. in fact, I was only able to put her down a select few times which lasted a few seconds before the crying began and she wanted to be held again. She was very clingy – I was curious if she was just very overwhelmed at all the chaos, noise and stimulation of what was going on around her.. but if you’ve ever met Annabelle – on her good days, she doesn’t know an inside voice or many strangers! I was hoping she was just very tired. Shortly before dinner time, we rounded everyone up and made our way back to our ‘Den’, bathed both girls and dressed for dinner.
There was a buffet downtstairs that we decided to call dinner. Mady enjoyed making her very own pizza from scratch. I found a beef stew that I made three trips back for seconds and thirds and I spotted a wrapped, untouched/unseasoned, Sweet Potato for Annabelle. When we got back to the table, I cut it into pieces and then asked Belle for her cup, she didn’t want to hand it over.. I pushed the plate of sliced sweet potatoes her way and she looked at me very cautiously.. finally she started to dig in.
I couldn’t help it, but the tears were more than I could handle to fight back. I sat there looking at my baby in absolutely Awe. I stared into her eyes and watched her motions as she carefully lifted the fork towards her mouth, over and over, and all I could think about is how strong of a little girl she is. She is an incredible fighter. 113 Days Without Food. All the little girl can eat are sweet potatoes and you have never seen a toddler more grateful for only that! Annabelle has taught each and every one of us something. I’ve never been so grateful for all things in front of me until this journey began for our family.. Ive never looked at food so carefully before. When I pass someone on the street, check-out line or driving down the road, I find myself never judging anyone and ‘where they are’ in this life.. when people pass me, they could never imagine what our family is going thru.. my heart crumbles just the same because each and every stranger we pass may be living a life of struggles too – I find myself extremely patient lately, I am grateful for this aspect of the experience.
Much similar to when I cared for my grandmother for her last several years, I never knew the compassion and genuine love and patience for the elderly that you pass in stores or the grocery store – sometimes they are walking so painfully slow thru the aisles that it can become frustrating, but what you cannot see are how much hard work and determination it took for them to leave the house that morning, and possibly how much pain they will be in for the rest of the day from just this one outing. I always, always offer a sincere smile of encouragement to those visibly struggling to accomplish day-to-day tasks that we take for granted that we can do. But what you don’t know is how much my heart melts and aches when I see a little boy or girl running around, playing and eating a meal and then I hold my own daughter. Perspective. Annabelle has flooded our family with so much perspective. I will never allow myself to look past or forget what this feels like, it’s truly a blessing in a way and I hope in some way each and every one of you can embrace it as well.
Friday night after dinner, both girls joined all the kids around the fireplace for Story Time. I could tell Annabelle wasn’t doing well. She didn’t want to sit alone, she didn’t want to join her sissy, she wanted to be held tightly.. therefore I made myself a spot right between all the kids and I sat down with her in my lap to let her enjoy like the rest of them.
Bedtime was a struggle.
Annabelle was clearly heading downhill and I could feel myself filling with anxiety! I didn’t want to have to be stuck in a strange place, and not the comfort of our home if Annabelle is going to be struggling all night.. there isn’t much escape of privacy where you can console Belle from crying and not wake Mady. It took Belle quite a while to fall asleep – mostly from playing games with us and jumping out of bed to peek around the corner. Finally we turned all the lights and TV off and she gave up the battle. She woke several times during the night.. finally at 5am she woke up screaming terribly. I couldn’t tell if she was scared, disorientated, in pain or what was happening.. it took a while for her to calm down and even longer for us to get her to go back to sleep. Her sleeping looked a lot like: Her head wedged between my chin and chest with curls up my nose and in my mouth.. and her feet in AKs throat. She was extremely irritable and uncomfortable. She jumped a LOT in her sleep and remained restless. I surrendered my spot in the bed at 6am and couldn’t wait for everyone else to get up and we could go find coffee! Mady had a wonderfully AWESOME time sleeping in the top bunk of her bunk bed. She was beyond thrilled to tell us all about it when she woke up. (as if we didn’t know it just took place J She was happy). Breakfast consisted of Dunkin Donuts coffee, a sprinkle donut for Mady, and a cup of Elecare Jr for Belle. Annabelle again wasn’t doing so great in the morning either.. I feared it was all going downhill but I was hopeful for her and trying to maintain a smile for Mady’s enjoyment of our ‘mini-vacation’.
Madelynne and I had little Pedicures scheduled at Scooops Spa at 930am. They dressed her in a robe. Wrapped a boa around her neck and asked what she wanted to smell like for the day! We both choose strawberries and we got a sizzling scoop of strawberry bath suds in our bowl for our feet. Mady picked out both pink and blue – alternating colors to paint her toes and she choose a dark blue for mine. While her tiny feet were soaking, they sprayed her down with glitter and yummy watermelon spray and we listened to Disney Radio as I enjoyed my coffee and she made small talk with the poor ladies rubbing her feet. It was a wonderfully fun and relaxing experience. It was so age appropriate for Mady that I couldn’t contain myself in how much fun we were both having.
After mini-pedi’s we went back upstairs to change and pack the car. I checked us out of the hotel while AK took both girls towards the water. Madelynne immediately ran to find her favorite slides and Annabelle clammed up. I told AK to go have fun and enjoy Mady.. to let her run and play and laugh as much as her little belly could handle it. I held Annabelle for the rest of the day.
The real-life reality of Annabelle’s situation began to hit me harder and harder as the day progressed. She didn’t want to play, she didn’t want to be put down and I struggled to gain a smile from her every time I tried. I stood there, following Mady around with Belle in my arms for hours.. I held her close and she watched all the other kids play. Watching all the kids run around, laughing and enjoying themselves and then holding a 2-year old that very well should be running around just as much, is eye-opening to our reality. It was a tough balance to hold the smile on our face for Mady but not find ourselves discouraged on Annabelle’s behalf. A couple times I was able to get Annabelle to walk around and pretend to play in the water.. but just as quickly as she would splash in the water, she wanted to be held once more. She stared off with a blank stare most the time.. she looked like she could sleep, but she wouldn’t close her eyes. She seemed awake but just not ‘there’ with us. Finally I decided to make her another cup and try to get her to take a nap.. it worked, when she woke up she began screaming. I struggled to calm her down and she struggled in attempt to cry herself back to sleep but she wasn’t succeeding. Finally I told AK to gather Mady and we needed to get home. Annabelle was just having a really really hard time, this was nearly the third day in a row that she was struggling and it wasn’t fair any longer.. not even for Mady to continue playing and Belle suffer. Mady was wonderful and gathered her things and we all changed and loaded in the car to head home. I believe Mady seeing Annabelle at the hospital the last few days has given us the biggest help we could ask for in helping her understand Annabelle’s struggles. Mady has gained a tremendous amount of patience and nurturing for her sister, I am so very grateful to see the two girls bonding in this way again. We take care of one another in this family, that is how I was raised and how I intend to raise my girls as well.
Look at those beautiful little curls!
This is what Annabelle looked like most the entire weekend.
I have spent a lot of time talking with our pediatrician lately regarding Annabelle’s last several days and she is equally curious as to how things are progressing. We have a couple new game plans established and I am using the resources all you amazing cheerleaders are providing us and putting them all to good use between Annabelle’s medical team and I. You all continue to amaze me at your selfless love and support for our baby girl and I cannot thank you enough. You’re all a blessing her our lives – perfect strangers but the biggest fans with the largest hearts I have ever had the pleasure of inviting to our ‘family’. Thank you all and continue to hold Annabelle in your prayers. We need more better days on the horizon, she needs more days to smile.
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