Nights are long.

When we got home from traveling, I immediately touched base with our doctors here to begin making changes with Annabelle's diet and care. The top priority is her night coughing and choking. I truly didn't recognize the severity until sharing a room with her. I didn't notice how persistent the cough was, which has to be affecting her rest - which is so vital for kiddos. 

The GI would like for us to wean down her night feeds so that her stomach isn't as full while she sleeps, hopefully to reduce the amount of reflux.

Personally, I'm terrified and disagree with this theory for multiple reasons. For one, Annabelle cannot more than a handful of hours without Elecare without losing consciousness and lethargic. Two, I don't believe she has much on her stomach. Her feed rare is set to 40ml/hr .. Which is barely over 1oz of formula dripping over the course of an hour. The goal was to feed her at the rate of which her stomach empties and I think we're there.. She doesn't have excess fluid on her tummy to make her choke the way she is... But u could be completely wrong! 

Before we make this transition though, I've requested to meet with both the GI and nutritionist to decide a better diet and scope plan before we start weaning off night feeds. 

The second concern I addressed was in regards to Annabelle's BMs. The poor girl is barely able to poop every 5-7days. We try not to go more than 5 days without the need of an enema to make things move. It's traumatizing to watch a baby go thru these things. I wish a doctor would help her beside ordering more meds - hopefully we can add fiber to her diet in a few weeks and that will help. 

In the meantime, we've had quite the crappy enema experiences. And I mean every word of that sentence. Including the parts where I am showering Annabelle while she cries in pain and ak is scrubbing you-know-what out of our bedroom carpet. Oh so gross :/

Once everything was finally "cleaned out" and Belle felt better, we began our new delicious med. Mineral Oil. We were told to start with 1 tablespoon x day. That resulted in another night that resembled our enema festivities. Our amazing nurse has deligently worked this week to find just the right balance for Annabelles poor tummy. 

1/2 tablespoon mineral oil + 1 drop food coloring of Belles choice + 1 packet of Splenda. Voila = medication a toddler will take. 

Gross. 

Upcoming appointments:

Optometrist 

We have an appointment for next Tuesday. I have a feeling a doctor messing with her eyes isn't going to go over very well, but we'll see.

Pediatric Surgeon
Wednesday we have an appointment to see the surgeon that placed her Gtube and nissen. I want to talk with him re: the integrity of her Nissen and if he feels as though that could be the root of this nighttime coughing. The main reason for this appointment is to have the nurse at the surgeons office change Annabelle's button. Of the last two times I have changed her button, both have been traumatic and entirely too difficult. I may be doing something wrong, or something may not be quite right with Annabelle's stoma. Therefore I'll have the nurse and Annabelle's full time nurse do the button change this time and we'll see what they say :)

The following week is when we will see our GI and begin to make plans with her diet. Let the co-pays begin!

No diagnosis, but big answers

First, I want to apologize for the delay in updating on our trip. Life hasn't slowed down for a second since returning home! Secondly, i'll cut straight to the point: we're not getting our diagnosis from this trip. Heart-wrenching, but there is still a light and blessing that came from our visit.


Monday was fast paced and absolutely insane. By the time Annabelle and I made it to our hotel room, we had just enough energy left to both take a shower together and unpack our bag for jammies and crawl into bed. The night went a lot easier than expected, I made her a cup and she watched TV until she fell asleep. I did not sleep in the bed with her and it worked out great for both of us. (Our girls don't sleep with us and trying to do so when we travel is always a nightmare!)

2am
This kid is barking her little head off. 
I knew her coughing was bad at night, but I didn't have a clue it was this bad! She's choking and coughing so badly it broke my heart. She constantly rolled around and moaned. The coughing wouldn't stop. She would smack her chest profusely in frustration... I cut off her feeding pump and hoped that would have helped. After 45min it wasn't getting any better, just worse! I finally woke her up and made her have some bites of a snack and a little water. She was so disoriented but ate plenty. Laid back down and REALLY started choking! Within 30min however, she was better and peacefully resting again. I turned her feeding pump back on around 530am and she slept until 630!

I spent the morning looking out our window at the traffic, watching my strong little fighter sleeping and filling out hospital paperwork. (why in the world do I procrastinate these things?!) She finally woke up and waddled her way to my lap where we talked for quite a while about the morning and what to expect. As she watched tv, I watched the clock. As she played her games, I finished packing all our things: 3 medical binders, charger for multiple electronic distraction devices, snack and diapers, things to show the doctors, list of questions, notepad and paper... etc. With just a few minutes left, I knew I needed to exhale before I started to vomit. My cousin made a quick trip to our house the night before we left, he gave me a special gift that he wanted me to take with me... a mother's prayer book.. I picked up the book and turned to the pages that he specifically marked for me to read. I cried like a baby. I can do this! I know I can. I looked at Annabelle sitting peacefully across the room, completely oblivious to the magnitude of how important this day is to her life, I looked down at my trembling hands and then my chin pointed straight up to the sky,

"Thank you Lord for giving this little girl to me. I promise to continue this fight for Annabelle today, I can do this. Lord be with Annabelle and let's all get through this together, please, please hold my hand today, help me ask all the right questions, open my mind and listen to their words, do not fear with my heart but lead the specialists with that gut instinct I've always had for this little girl. Remind me to breathe, exhale, remind me to acknowledge Annabelle in the room even when she's being quiet and help me carry the patience and strength this day is going to demand. Thank you so very much for always being here for our family and sending all the angels our way for the prayers and love. Thank you. Amen."

Annabelle was adorable as ever with her new outfit and bouncing curls. We loaded the stroller and headed downstairs. She was asking a lot of questions and I could feel her nerves building.. I picked her up out of the stroller and she clung her arms around my neck as tight as she could. "Sweetheart, I know you're scared. But we are going to the doctors today, and I know he will help us, ok. Mommy will not leave you, I promise. It will all be over soon and we will come back to our room, alright?" 

It's amazing how much a 3yo can understand when you speak to them honest and truthfully. She understood every word and we walked around the lobby until the shuttle was ready for us. 

The shuttle ride wasn't far at all, Annabelle played some games and watched out the windows as we moved thru the town with a few other families on the shuttle. I pulled out the prayer book again and decided to flip thru some pages to pass the time. I found one verse that seemed to stick with me for the duration of the trip. I bookmarked it and read it probably 50 times over the next couple days, 

Lord, give me hope.

Give me patience to cope

and a reason to keep on trying.

Take my trembling hand

Give me power to stand

and a faith that is strong and undying.

I don't know what it is about those words but they are just what I needed to hear and believe as the day progressed.

We finally arrived in the hospital and began to make our way to Immunology. That is where we spent our next 6 hours of the day, in that one small room learning, talking, begging and exploring ideas with some of the best doctors we've ever had the blessing to meet. 

Here is the run down on what we learned. 

• The doctor and team do not believe Annabelle has an 'auto-immune' disease. 

She did not meet multiple indicators that would make them believe it's auto-immune. Annabelle is presenting a much different array of symptoms that do not align....

• They believe our diagnosis will reside either in the area of Metabolics or Rare Disease. 

We consulted with a Rheumotologist while in the hospital and she too did not support an auto-immune red flag, but she did order multiple tests that will hopefully either lead or dismiss a diagnosis for Lupus.

• Annabelle is extremely malnourished. 

I was being 'smart', as I typically am, and asked the doctor, "Food? Diet? Doesn't she look healthy to you?" My frustration with Annabelle's diet is pouring out of every nerve in my body. I absolutely despise the fact that she's on such heavy drugs, steriods and has zero diet. I swear with everything that Elecare Jr (her medical food that she's been on since birth basically) is going to kill her. I really mean that.

The doctor responded very harsh, "No! She doesn't look healthy at all to me, she looks extremely sick and lethargic!" I told him, "Well, she weighs 32lbs.." He laughed quickly and said, "Well Mrs Bishop, she is fed nearly around the clock and takes prednisone twice a day. She BETTER weigh 32lb. But that doesn't mean she is nourished, and this child is NOT." 

He explained in a very tactful way that Annabelle is a typical patient suffering from Eosinophilic Esophaghitis that is being care for by a medical team that doesn't quite understand EoE. I did not request an Immunologist that specializes in EoE but it just so happened that we were scheduled with one of the top doctors that focus in Annabelle's leading disease. What a blessing in disguise, what a blessing for the perfect combination of doctor for Annabelle! 

He explained, Annabelle's diet is about the size of a pen tip. Her diet should be the size of a basketball. Her nutrition is based on the exact same feed, of the exact same measurement, of the exact same quantity, every single day, every day of the week and every week of the year. What happens when a toddler hits a growth spurt? They eat you out of house and home and you wonder how in the WORLD that small child just ate so much food! When Annabelle hits a growth spurt what does she do? She is fed the exact same feed, of the exact same measurement, of the exact same quantity, every single day, every day of the week and every week of the year. At the age of 3yo, her little body and brain are constantly growing and demanding so much to thrive. Her diet isn't allowing her to do so safely. 

When Annabelle hits a growth spurt, or demands just an ounce more than what she's getting from her diet, her little body turns on itself and starts breaking itself down. This is when we see the outward result of: lethargy, fevers, seizures, little balance, no energy, sleeping constantly, or at times, the exact opposite - extremely hyper and unresponsive. Annabelle's body is breaking itself down constantly trying to survive. We feed her nearly around the clock, 24/7, but in reality, she is so badly malnourished, we are killing her. 

I looked out the window at the cars driving 9 stories below our hospital room and my gut sank. I swallowed hard past the guilt and pain the doctors words had just caused and reminded myself again why we were here. I stood up to Annabelle's bedside and with a new game face - "Ok then. What do we need to do immediately? How do we fix this problem and what is a responsible game plan for starting Annabelle on food, because I do not have the GI support in Richmond to do this on my own. I will need guidance because there is a great chance I will be conducting this new treatment plan when I get back.

He assessed Annabelle. Her skin tone was several different colors, tones and textures, her pupils dilate extremely slowly, she has bags beneath her eyes and her eyes are sunken in, she hasn't had a BM in days and her mouth is dry. 

Her diet consists of very few fruits and veggies right now. We decided to conduct a new allergy test and determine which foods she still has an allergy to and which foods are safe to introduce from an allergy perspective only. 

Annabelle was not happy at all about the allergy testing. She screamed like I had never heard her scream before. She's been so good lately about lab work and tests, I couldn't believe she was this traumatized about an allergy skin test. It was bad, she cried, fought, screamed and begged with everything she had to not endure the test - but it was so essential. Before we knew it, we were finished. She turned around to the allergy tech and demanded an answer, "WHY YOU PUT HOLES IN MY BACK?!" I couldn't help but laugh at her innocence and frustration. 

To our disbelief, of the 32 foods we tested, Annabelle only showed a positive allergic reaction to ONE food. She is typically allergic to 75% - 100% of what we test for, and she's finally appearing to be growing out of her allergies. What a blessing. 

The only food she is allergic to from a skin test perspective is, Beef. I'll take it. 

The game plan is to introduce foods into Annabelle's diet very creative and thoughtfully. We need to meet with our Dietitian and GI in Richmond before we can begin a food trial. While having food in Annabelle's diet is a necessity, a hard relapse from Eosinophilic Esophaghitis is still life-threatening and an intro of foods must still be performed responsibly. We will evaluate what is in Annabelle's diet right now and then determine what foods she is desperately lacking and prioritize which should begin first. One food will be introduced, and 3-4 weeks later we will start a second food. Once two foods are in Annabelle's daily diet, we will perform another Endoscopy. 

This means over the course of the next three months, we will get two foods and scope / biopsy every 8 weeks. (Hurry up and wait, right?) It's a very very slow process but an essential one.

This is our main priority going back to Richmond. 

Secondly, we are instructed to put all our energy towards getting Annabelle into a Rare Disease Clinic as soon as possible. 

The two clinics we are recommended to consult with are either CHOP or Mayo Clinic.

Labwork

After spending hours in clinic, we headed to perform some bloodwork. This place was a bit more traumatic. Not only did Annabelle have a complete screaming meltdown and fight to not have to sit in that horrible chair with me as they drew blood.. but the entire wait in the waiting room was horrible. The doors for each room were made of tissue paper and we could watch as each child was called to the back and then hear them scream bloody murder. Talk about setting the scene for an already terrified toddler :(

Finally the day was over, and we were starving! Annabelle and I found a nearby restaurant, and promptly once we sat down, I asked her what she wanted to have "CHICKEN NUGGETS!" bless her heart. The poor child wants a chicken nugget so bad she can't stand it. She's never had a chicken nugget in her life and that's all she wishes for. That explanation was so difficult. She thought if she went to the hospital all day, and was so perfectly well behaved as she was, then she would get chicken nuggets from the doctor. Oh how disappointing!  Lunch was great, there were no chicken nuggets but it was a perfect setting as she called her daddy and told him all about the doctors. 

Our hotel was only about a mile from the hospital so I called and told them we would walk back instead of taking the shuttle. I wanted some fresh air and I think Annabelle and I both needed the time walking down the streets with the gorgeous fall leaves and cool wind blowing around us. She laid down and got some rest, she pushed the stroller and we laughed making goofy faces at one another the entire way. It was absolutely perfect. Everything about the walk back to the hotel was exactly what we needed, her and I. 

Once we were back into our hotel room, we took another shower and snuggled back into our comfy clothes. I texted a few people the update from the day, called daddy to let him know we were going to take a nap. Then pulled the curtains shut, phone on silent and we slept. Annabelle snoozed right away and I laid on my back thinking about the heart break of leaving that hospital without the diagnosis we prayed for but leaving with so much more information than I could have ever thought we would get. My worries didn't drown me far, I fell asleep almost as quickly as Belle did and it was wonderful. 

We got up around 530pm and I asked what she wanted to do. The night was young, the girls were free to do as we wished, anything, .... she wanted to go swimming :) The hotel had an indoor pool and games so we dressed appropriately and headed downstairs for a bit.

After the pool.. we took, you guessed it, another shower and then hailed a taxi to hit the town! We walked down the busy streets and took in the life of the city. I cannot believe I had the guts to do it, but we were only there once and her and I deserved the fun night out. We found a few unique toy stores, and then a restaurant of her choice for dinner. We both cheers'd our glasses and kept our pinky up during our undisturbed dinner alone together. It was a great night. The weather was cool but not cold, the timing was perfect and by the time we made it back to our hotel room, it was time to pack our things and get back to bed. 

The next morning we rushed to the airport and made our way back home to Richmond where daddy impatiently waited for his girls. I was so glad to be home, be back to my right-hand-man, back to my own bed, have a car but mostly - I was so glad for Annabelle to be back in her daddy's arms.

We've arrived!

The afternoon was about as hectic and heartbreaking as I expected it to be. I rushed home with enough time to find our incredible nurse pulling everything together for us. Annabelle was dressed to a T and Madelynne was clearly aching over knowing we were about to leave. She didn't want to be more than a few feet away from me the entire evening as I frantically rushed around the house. 

AK was wonderful and packed everything I asked him to, he loaded the car while I played with the girls and talked to Mady about dance class tonight and dressing up in her princess dress for Halloween :) then, I gave Annabelle and Madelynne time to tell one another they love each other and goodbye's.

Finally we were on our way to the airport and Annabelle was way more excited than anyone should be considering the reason. 

http://youtu.be/UWQ0fFyO2P8

Ak walked us into the airport and finally gave his goodbye kisses to his strong little girl. I thought I would break down and cry until I saw his eyes and knee if I let a tear fall, than the both of us would be an ugly mess! 

I rushed thru security and we made our way to our terminal. Annabelle was so excited to finally see an airplane! She couldn't wait to get on the plane :)

Once we were on the plane of course, she had to potty. And begin the marathon! The flight was actually wonderful. Belle never stopped talking but she was incredibly behaved and while exhausting, I truly couldn't ask for anything better. 

The taxi ride wasn't bad, I had a complete anxiety freak out moment as we were flying on an interstate and my baby was sitting in a seat with a lap belt and not a securely latched 5pt safety harness!!! Belle on the other hand thought it was the best thing she's ever done.. Beside flying in an airplane ;)

The moment we stepped into our hotel room, I stripped both us down to scrub all the germs off and shower. Annabelle is exhausted, as am I. I have a lot of paperwork to do before the morning and she is trying to fall asleep beside me as I update you all. 

http://www.youtube.com/watch?v=mXrZPOKisB0

Until tomorrow friends!   

Hope turns to a flood of worry

Fear.

Anticipation.

Sadness.

Worry.

Hopeful.

We've been so excited for this day for weeks now. The potential to finally have found a team of doctors that can help us, help give us an explanation for all Annabelle's pains and failing body, the hope for a true diagnosis.. it's here! The day is here and I am sick to my stomach. What if I can't deliver the right information the doctor needs to hear to generate the right wheels for him to help us? What if Annabelle is so upset and misbehaving while the doctor is in the room that I am more distracted by her and cannot answer their questions clearly. I have SO much information they need to hear, such a long history of multiple system failures and a constant up and down journey that always involves another element of weirdness that we can't explain. What if I'm not able to articulate the acute need we have for their help, we are at their mercy, what if they miss a linking piece of the Annabelle-Puzzle that would fill the blank for them to recognize what's happening to my baby. 

I am scared to death. We've invested everything we have into this trip. The costs are coming out of the pockets of beautiful strangers, family and friends who have funded this step of our journey. It's financially draining our family, it's breaking Madelynne's heart that I'm leaving her for three days and it's flourished Annabelle's intense anxiety over the fact we're traveling to a hospital and more doctors. There's such a gamble involved and I pray with everything possible inside of me that this trip becomes everything we hope for.

I told Annabelle yesterday that we have a trip coming up. I almost wish I had recorded it but you would have died inside... It was a hard moment for us to explain where we were going, why we were going, what we'll do there and what it involves. Annabelle is far too mature for her young age of three when it comes to the medical world. She doesn't trust anyone and she doesn't trust me. Her main question was: Why daddy and sissy are not coming with us. She pleaded with tears falling to not go to the hospital, she begged to not have to see a doctor. Finally she asked, "will the doctor take all my boo-boos out of my tummy?". I told her we are going to talk to the doctor and maybe he can tell us how to make the boo-boos go away. She wanted to know if they were going to hurt her and I can't make any promises. I refuse to lie to her and truly believe that the only way she will trust me again is if I am perfectly honest with her even if it's not something I would want her to hear. This is the hard part of cruising this nightmare with an infant into a toddler - the way we conduct appointments and procedures are much different now than they used to be.

Our bags are mostly packed.

3 cute outfits for Belle

3 tops and 1 pair of jeans for me

558873268 face masks

2 bottles of hand sanitizer 

Cross necklace

Superwoman underwear 

Lambie
Mountains of medical reports, labs, tests, etc
Bag of distractions: books, kindle, toys, bubbles, etc.

Our flight leaves tomorrow evening, (Monday) at 705pm. I am working and in meetings all day, then rushing home to gather our last minute things, give our family a flood of hugs and kisses and rush to the airport. Tomorrow will be insane. Bring on the redbull and coffee!

Pray for us as we say our "I love you's" to our little family and make our way on a plane. Pray Annabelle doesn't spike a fever moments before going thru airport security and pray we don't catch Ebola on the plane!!! ;)

I promise to keep everyone updated in the days ahead. 

xoxoxo

Big things all around us

Fingers crossed that the peak of the storm is over and we can smoothly sail into next week. There are still bumps in the road, it's as if every day Annabelle is presenting another odd quirk that constantly controls our focus. Whether it be her fluctuating temperature, erratic behavior, little appetite or massive appetite, incredible amounts of fluids but not urinating for 12 hours, dramatic fast changes in skin tone or simply crying that her legs hurt to walk. Something is brewing and going on, without a doubt - I want so badly to act and proactively get my daughter help before this storm spirals out of control, but I know the best thing for Annabelle is to hold our breath until we get to the hospital next week. It's only a week away and I have every finger crossed we can make it!

She's done a few big things lately :)

Annabelle was in the newspaper! A member of the band during the benefit a few weeks ago, fell in love with Belle. He had the biggest heart and reached out to her multiple times during the evening and I could tell she really touched him with her story. I was asked a couple days following the benefit it I minded that he feature her in the paper he's associated with. I didn't mind at all, and I knew Annabelle would be tickled to death to see herself. I didn't have a clue what he would say so my curiosity ate at me until the day I finally saw that precious face - ON THE FRONT PAGE of the Country Courier. Check it out: http://www.countrycouriernews.com/

 She's a super star! She's famous! ;) We're having a ball in our house with the whole idea and I couldn't be more grateful for the opportunity for Annabelle. All we could ever ask anyone, friend, family or perfect stranger, all we need are prayers. The more prayers to be heard, the best chance we have to helping Annabelle. An opportunity such as this delivers more for our family than I could ever wish. It's an opportunity for others to see her precious smile and impacted by her amazing story made in only her few short years thus far. If this article in the paper was only able to touch one or two more people, it's guaranteed worth the difference it makes in Annabelle's life. An answered prayer is on the horizon - I know it is!
Thank you so very much Danny, our family is forever grateful and blessed by the heartfelt words you shared about Annabelle and our family.


First Dentist Appointment
Annabelle doesn't trust anyone that dresses in scrubs. The moment she see's a piece of medical equipment, she looses her mind and understandably so. I've taken Annabelle to every one of Madelynne's dentist appointments so she can begin making the association with the dentist office being a nice, friendly, painfree place. She's ok with that as long as sissy is the one in the chair. She did great holding her sissy's hand - but the moment it was Annabelle's turn, it didn't go so well. She does NOT want anyone touching or messing with her anymore. This medical nightmare is so much different from when she was a baby and didn't understand or remember that doctors / nurses would hurt her. At the ripe age of 3, she doesn't forget anything and because of her poor history - she doesn't trust anyone either. ESPECIALLY not a person wearing a smile in scrubs and rubber gloves. No way!

We weren't able to 'clean' her teeth, but they did get a chance to take a little look around and 'count' her teeth. I asked specifically to not make this trip traumatic, because after all it really wasn't 'necessary' to have to be there. Yes, she should be having dentist appointments at 3yo but we don't have any major concerns with her teeth so let's not add the dentist to the ongoing long list of places we hate to visit.

My only concern with Annabelle's teeth were around her oral hygiene and how Annabelle's limited diet could adversely impact her gums and teeth. Mostly - the fact that Annabelle is given liquid prednisone, mixed with 6 packets of sugar to thicken the mixture and squirting that directly into her mouth = Im beyond freaked out over cavities and this cocktail rotting her mouth. Fortunately, everything looked great and the dentist was able to share a few tips to maintaining healthy gums and hygeine throughout this process, including if/when we loose food completely and Annabelle isn't able to eat. What would we do then? Chewing / saliva etc are in fact very important parts of digestion. Your stomach needs the saliva produced from your mouth in order to maintain a healthy balance within your body. "Chew toys" are handy if/when children cannot eat because it continues to promote saliva production to maintain that balance in the stomach etc. (All conversations I never thought I would be having with a dentist!)


Pumpkin Patch
The family enjoyed a much needed day outside at the pumpkin patch over the weekend. Annabelle had a great time and played well, even during spells of lethargy and fatigue. (I can't tell you how many times I kicked myself for not bringing a stroller!) We went down the slides together and screamed in the dark tunnels, she rode pedal cars and even had her first pony ride! The pumpkin patch full of a billion pumpkins weren't anything Annabelle was looking for, she decided she only wanted a tiny little pumpkin near the check-out line so we got back on the hay ride with the rest of the families pumpkins and an empty handed Annabelle to find hers.

 Look at those curls!!!! Her hair is growing a little lately :)

 Feeding the 'am-in-als' with daddy.

 Mommy and Belle before going down the big, dark slide!

 Mommy, Aunty-Andi and Belle on the hay ride to the pumpkin patch :)

The day was wonderful and the kids had such an incredible time. Im glad we were able to enjoy the pumpkin patch, last year it was a bit different.. last year she could barely walk with a forced smile.

We're beginning to pack our things to prepare for the trip. Annabelle woke this morning, early, crying that she doesn't feel well and her throat hurts. The weather has suddenly changed and I would agree a lot of people probably aren't feel too great right now either. Hopefully it's short lived and the week passes quickly.

36 Hour Panic

Annabelle's behavior over the weekend set the tone .. not bad behavior, but scary spells of weakness, neediness, very tired and then spells of energy and typical 3 year old energy. I didn't like the mood shifts. During these times, I find myself removed from the enjoyment and friends and family around us, and alone in a corner watching my daughter like a hawk. It's an indescribable NEED to be right next to my child, studying her every move. It's an instinct that could never be found in words.
It's the gift I am so grateful and blessed to have deep within me.
It's the reason we are Annabelle's parents.

Saturday was her most difficult day. She was so very tired with sudden mood swings and energy / lethargy spells. I was worried about what would happen next, my intuition told me something was about to happen (as I promised you all days ago it would!). We moved forward with our weekend plans and stayed in with the neighbors. We let all the kids run, play, laugh and make messes the best they could. They played, we held a glass and cheers to parenthood. All the kids slept so well Saturday night.. Annabelle slept a little too well.. she didn't wake until almost 9am Sunday. Annabelle is rarely up past 730a, at the latest. The morning went well but shortly after noon I could tell something was off again. She slept the entire afternoon.

Move forward to Monday. My heart was in my stomach as our nurse and I debriefed over the weekend and I explained what to expect behavior wise from Annabelle during the day. She promised to keep me updated and I headed to work on pins and needles. The day was perfect. (what?!) No issues what so ever, in fact, Annabelle was extremely full of energy, she played outside a ton, rode her bike, had an appetite and ran to me with a huge smile and happy. I was relieved the day went well - we headed home and moved about a Monday night, with a twist. It was daddy's birthday and Mady had dance class. Madelynne hitched a ride to dance class while the rest of us went out to dinner! Happy Birthday AK and papa (AK and his daddy share a birthday)!

Bedtime was uneventful and a delicious martini made much needed sleep easy, (for me, not Annabelle of course). Tuesday was a rush to get out the door on time. Madelynne was running late for school and Annabelle . . . . . she was in our bed. She had joined us around 430am moaning, crawled between AK and I, and watched TV as we began the day. She didn't want to get dressed.. she didn't want to eat, she didn't want juice, she just wanted to lay in mommy's bed. On the way to our nurses house, she cried until she fell asleep. My stomach sank once again. I kicked myself for being so naive thinking we were out of the woods just because of one good day. Every fiber in my body screamed "Take your baby home Ashley, turn this car around and snuggle her all day". Validating a gut instinct isn't always easy, and deadlines, meetings, work and payday can't wait - I dropped my pale little girl with heavy eyes off to her nurse and drove to work silent. And broken.

1230pm my phone rang and it was our nurse. I wanted to vomit when I read the number, I knew at that moment what was going on. She explained that Annabelle wasn't well. She had a fever, will not drink anything, won't move and then while I was on the phone I could hear her retching (trying to vomit, although she can't because her stomach & esophagus are sewn together). 

I assured her I was on my way. Gathered my work things faster than I knew possible and ran out the door shaking from head to toe. The drive felt like an eternity but the breath of fresh air when I finally got to my baby girls side was worth the race. She looked terrible. She was so pale, lethargic, barely able to move her head around.. I was so nervous to move her. More than that, I was nervous her temperature would move further than from where it already was. The nurse and I talked for a short bit until I felt comfortable gathering Annabelle, our things and loaded into the car.


Every bump feels like a speed bump when you have an ill child in the back seat. Every moan she could manage, cut me even deeper that I even left her that morning. Annabelle never fell asleep.. she eventually stopped moaning and just stared off. I could call her name and talk to her occassionally, if I was lucky she would look her eyes into my direction - she mostly just looked off, with an open mouth and the saddest eyes. 

About a mile from our house she began to get very uncomfortable and nervous. She started crying and yelling "Mommy!Mommy help. Mommy!!!!!" I couldn't do anything but promise we would be home soon... then the seizure began. Let me just tell you, the horror and pain to watch your baby girl seizing in your back seat when you can't stop the car, or help her, is absolutely sickening to witness. We were so close to home, I didn't stop.

My eyes focused too heavily on her in the back seat than they did on the road, but we made it home safely. I pulled a limp, barely conscious, 30lb body out of the car to find she had lost control of her bowels during the seizure. The carseat, clothes etc were covered.. We made our way upstairs and I stripped her down in my bathroom. Her temperature was rising. 101.7. A quick bath and Tylenol, and we both laid in bed. I watched her little exhausted body as it took deep breaths and gentle exhales from dreamland. Lord, be with this baby girl - help her thru whatever battle she is fighting right now. We only have days left until we get help, please please help us make it there!

Around 5pm her temperature was lingering around 100.4, I gave Motrin.

9pm her temp moved to 102.6. The fear that filled my mind was that I wouldn't be able to control her temperature at home. We had been alternating between Motrin and Tylenol and overlapping each all day without any success in bringing her temperature below 100.

 As her temperature began to climb, her behavior became erratic. She was running around the house, laughing, hysterically laughing and playing, yelling at Mickey Mouse and teasing her sissy on a level that scared me to death. I would call her name and struggle to gain her attention.. I knew she wasn't consciously 'Annabelle' and something neurologically was going on. With a harder push of fluids, we decided she needed to get in bed, in her cool bedroom with the fan on and rest so the medication can begin to work and her body cool down. We laid in our own bed with heavy hearts, praying and fearing the worst for the evening.

 

Around 10:15pm, a heavy urge told me I needed to go check her temperature and see how she was doing. I yelled from Annabelle's bedroom to AK "Hunny! We have a problem! Run the bath water quick!!" She was hardly conscious even as I yelled her name and shook her around. I carried a limp, hot child to our bedroom and took her temperature several more times to be sure I was actually reading the thermometer correctly. To our disbelief, she was reading 105.8 degrees. My kid was cooking.

As the bath water ran and we undressed her from her diaper and shirt, I felt all over her body. My heart literally stopped when I got to her legs and feet - they felt like ice. The rest of her body, including her hands were burning hot but her calves and feet were cold to the touch and grey. They looked chalky grey and blue. I squeezed them and the color disappeared faster but didn't return. Gosh I wish I would have taken pictures now, but at the moment I could hardly breathe let alone think about anything past breaking the fever.

Annabelle couldn't walk, she could hardly hold her head. She wasn't in pain or complaining, she simply looked to the wall and never said a word. I carried her in the bathroom where she mumbled she wanted me in the tub with her. What do you say to a child when they have that request?! AK held Belle and I climbed in the cool tub (Ohhhh it was so chilly!) he handed me Annabelle and she didn't mumble a word. I thought for sure she would cry from the discomfort or cold water. She didn't say a thing. We poured water over her little back as she laid over my chest. We told her over and over how proud we were for being brave and repeated more times than I can count, 'you're doing so good Annabelle, it's almost over, tomorrow is a better day sweety."
During her bath she was able to mumble the words, "Mommy, sing a song?".. I racked my mind and couldn't think of anything appropriate. The only song that came to my mind was, "This girl is on fire!" haha. AK just shook his head and laughed to Annabelle, 'your mommy is nuts little girl'.
She smiled.
I exhaled.

After the bath, her fever began to come down. Very slowly but at least it wasn't rising. Soon, she was asking to watch TV and start to talk to us again. Her feet and legs regained color and circulation. We reconnected her to the pump to continue pushing pedialyte and she laid in our bed until we felt comfortable putting her back into her own bed.

During the night we continued to overlap medications, change fluids and change her diaper. Annabelle is potty trained but either due to the amount of fluids she was on or an association with the fever, she wasn't able to hold her bladder during the night. Each time we were up with Annabelle, she needed to be changed. She slept like a rock, never really rolled over - she just laid on her back like an angel, absolutely exhausted from the fight it was taking her body to weather this storm.

The next day, her temperature remained around 99.1-99.5, that evening it stayed steady around 100. Today, she hasn't run a fever and she is back to her normal self.

I talked to our doctor and we discussed what happened. She wasn't surprised, nor was I. She shared my frustration that there really wasn't an explanation for what happened during the last 36 hours. THIS IS WHY WE NEED A DIAGNOSIS! HOW ARE WE SUPOSED TO PROTECT, CARE AND HELP THIS CHILD IF WE CAN'T EVEN EXPLAIN TO AN EMERGENCY ROOM DOCTOR WHAT IS WRONG?! Everyone keeps asking why I didn't take Annabelle to the hospital, my doctor and I discussed the entire scenario and she praised me for our decision, and agreed that a hospital would not have been able to provide any more safety for Annabelle than we were at home. (Heck, I'm certain she's safer under my care than ANY hospitals at this point!)
We talked for a long time over the phone and I explained my main concerns:

• Inability to control her fever, not to mention the temperature it reached
• Erratic behavior that we have never seen, between temperature shifts
• Circulation to her feet at the temperatures peak, also something new to Annabelle

Fortunately / Unfortunately for us, this situation was actually helpful as we move down the road towards a diagnosis. All the signs she presented during the 36hr window, are all indicators of a connective tissue auto-immune disorder.

Our doctor explained specifically, the presentation of possible Raynaud's Phenomenon. She expressed multiple concerns that this could be the explanation of the circulation issue, but it's just so uncommon for toddlers to have Raynaud's Phenomenon. Regardless, everything we witnessed, documented and Annabelle experienced is just more validation that our trip in less than two weeks will be exactly what we need for answers. That being said, if this 'spell' begins again or we have any indication something in her body or neurologically is going to shift as it did this week; we have very strict instructions to get in the car and drive. Drive straight to the hospital we are visiting. Do not pass go, do not waste our time in a Virginia hospital. We are instructed to call our doctor and she will make contact with the hospital to inform them we are in route and need help ASAP.
At least now, we have a firm action plan. Let's just hope I can make the call in enough time that we can safely travel the day it will take to get to the hospital.


Annabelle's nurse has stayed by her side every day. She is our true angel here on earth, sent directly to Annabelle from heaven. She's been able to lay next to her and give her all the snuggles and love we can't while we are away. She's kept me updated on her vitals multiple times x day while I am at work. Her BP, heart rate, and temperatures have remained stable since the spell has ended.

Her appetite is slowly returning.
Her strength is very slowly returning.
I haven't noticed any concerns with circulation.
She has not had a BM since defecating due to the seizure.
She is still receiving extra fluids via pump between feeds but otherwise she is back to her normal self.

We're left exhausted, our heads spinning, heart racing, heart broken, worried and confused. This child is going to give us grey hair, well before we are ready!