Monday, October 20, 2014

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:

 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.

Thursday, October 16, 2014

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!

Saturday, October 11, 2014

Small Town Throw Down for Annabelle

For two weeks we've been holding our breath. Annabelle has consistently remained pretty stable over the last several months, with only minor fluctuations here and there. Recently however, things are beginning to shift with much more clarity again. Logic and rationale tell me there are explanations for each shift I see in her health and behavior – my gut on the other hand tells a much different story. I am internally panicking. I am internally shutting down and isolating myself so I can focus only on what I need to for Annabelle. It’s hard. I need for things in life to be still and quiet, consistent and steady so I can read into what is going on without outside influences. I swear, life of a special needs kiddo is utterly exhausting, this is the ride that I dread the very most. The moments / hours / days / weeks when I find myself infatuated and completely absorbed into my child's every behavior because my gut is SCREAMING that something is about to happen. There are not enough words to explain to you just how nauseating that feeling is. Imagine being told today that sometime in the very near future, your precious laughing child is going to be involved in a terrible car accident – you don’t know how much damage and injury it will cause, but you know the fear, unknowns, pain and panic will be there. And you cannot do anything at all about it, but wait. Wait for that moment and predict when it might happen. Protect her and tighten her carseat straps a little tighter when you drive (put a face mask on every time we leave the house), and tell her you love her entirely too much as you watch with your gut sinking. That is where we are right now. We are counting our days and pleading with Annabelle, “Just wait a few more weeks sweetheart, we will get some help in just a few weeks, I need you to hold on until then.” Mark my words. Something is about to happen - I pray I am wrong...
Of course, as much as we need quiet and calm – life hasn't slowed down much for us to allow it. Annabelle’s birthday and her benefit have been filling our weekends back to back. No complaints here, they have been so much fun and deserving of the good time our family has needed. Annabelle has been beyond herself from all the outpouring love and support she’s received the last couple weeks. The sequence of events however, have followed in line with the struggles Annabelle's health has been indicating. The morning of the benefit, while we were getting ready and setting up, I looked at Annabelle and her color began to worry me – within several minutes, her legs began to buckle and her words became slurred.. the color over her skin changed so suddenly from sun-kissed to yellow, almost orange with the scariest splotchy face and dark circles below her eyes. I knew we needed to leave. I gathered Annabelle and loaded her in the car quickly and we headed home. On the way home she cried and pleaded “Mommy, you carry me inside? Please mommy?” I carried her in and laid her in my bed. We got into some comfy jammies and out of big girl undies, but into a diaper and covered up. She looked pitiful, exhausted, and her eyes cried for help. She hadn't done anything all morning, nothing at all out of the ordinary - so why was this happening so suddenly? My heart sank into my stomach and I just knew ‘this is it – something is turning on us’. Annabelle locked eyes with me in the bed until she fell asleep, she whispered so softly over and over ‘my body tired mommy – inside my body is tired.”
There was so much anticipated and planned for the benefit. My heart began to break that she would miss it.... however, our families focus and priority never left my mind. I laid in the bed with her for hours that morning while so many friends and family were working hard to get things ready. Just 2-3 miles down the road, our house was quiet and prayers were pouring from my king size bed as I wiped the hair behind the ear of my angel as she slept. 
“Lord be with this precious child throughout this day. Bless our family and all those taking time from their lives to see Annabelle. Let them see not the equipment and medical mask she wears over her body, but guide them to her heart and feel this child's strength. Let them see deep into her eyes that are so bright, full of life, love and innocence. God be with our family today and let us share Annabelle’s story in a way those that are curious can understand. Help us spread the message at Annabelle’s desperation for help from the brilliant doctors we know are out there. Above all God, allow Annabelle’s light to shine so bright into the hearts of all those that love her, that they never take a single day or moment for granted. Let this blessed event be a milestone on our families journey in which we have touched the hearts and souls of perfect strangers we will soon call ‘family’. Because after all, family are those that selflessly love and support one another. No judgments or questions asked, but constant promise to be there for one another, just as you have been there for us. Give our family the strength today God, give Annabelle the strength to enjoy every minute as she deserves. We ask in your precious name, Amen."

Annabelle was able to make the benefit. And by the blessing of answered prayers, she laughed, played, ran and stole the hearts of so many that came out. The evening was wonderful and everything we hoped it would be. I was so nervous about the amount of people that I wanted to meet, share my love, hug and graciously thank for coming out - but in the end, it all came more natural than I could have ever hoped it would. Meeting perfect strangers isn't always easy for an introvert such as myself, but the evening and it's purpose made the conversation all too natural for our family. I was able to meet some of the most humble, incredible people I may have never had the opportunity to meet if not for the benefit. My heart hasn't stop beating so hard since last weekend. There would never be the right words to describe the gratefulness and genuine love I have for each and every one of you that continue to carry Annabelle's name and story close to your hearts. Those that I was able to meet last weekend, those that have donated to this courageous little girl, those that simply love and pray for her, those that share her story to perfect strangers - I cannot thank you all enough. My heart is entirely grateful to have you part of our lives, even if for the unfortunate reason as Annabelle's fight - things are aligned for a reason and having you all part of our 'family' is nothing short of a blessing. Thank you all, thank you from the bottom of my heart. Words, hugs and the grateful tears I shed do not serve the justice for how our family feels. Thank you. 

The best news. We were able to raise enough money for Annabelle and I (Ashley / momma) to get to the hospital in a few short weeks. Daddy and Madelynne will stay here at home to keep the normalcy for family as Annabelle and I travel. Once we are there, depending on the amount of tests, consults and procedures the team decides to do, will reflect the price tag for finding answers for our daughter. A cost cannot be attached to our need for answers.. but the reality is that insurance isn't following us out of the state. While devastating - it's not a focus we can consider at this point. We know the best chance we have to helping Annabelle is this hospital and it's team of doctors waiting for us. At this point our only focus is on getting to the hospital and gaining the answers we so desperately need. All else will fall into place and will have to be evaluated afterwards - for AK and I that are SO very careful with our finances, this has been the hardest decision to 'wrecklessly' gamble and pray the traveling and consults are worth the price it's going to cost our family. If this isn't our answer, I have no idea what we will do next. There have been so many brick walls in our way that we have crossed, I don't know how many more Annabelle can climb,only to find there is another wall on the other side. All my prayers and wishes are invested in this trip - everything we've looked forward to I pray will be answered at this hospital. It has to be.. after all, we've never had so many angels praying for us until now - those prayers have to shed light and answer all the questions Annabelle deserves answered. They must!

Here are just some pictures of the wonderful night shared with amazing people. Enjoy!
Delicious pork butts / BBQ 
 Annabelle helping cousin Daniel say grace before dinner is served

Cornhole Tournament Rules. Winner gets a case of beer and a cooked pork butt

Everyone enjoying the crisp fall evening with some of the most amazing people

Annabelle & her nenaw drawing the winner for the 50/50 raffle!

Time to dance with some of the best! Kickin' Country Line Dancers came out for the night and entertained everyone with their dancing. It was amazing to watch... and just may have been enough to convince me to start dancing again ;)

Cousin Daniel helping Annabelle carve a pumpkin

'Bayside' - the band was wonderful and kept the party moving all evening. Also some of the most humble, genuine and loving people we've ever met. Thank you all for the entertainment for the night.

Daddy's turn to carve a pumpkin

Tuesday, September 30, 2014

Flights are booked! Benefit is in only FOUR DAYS!

Flights are booked! I wanted to secure our flights while there were still convenient flight times and seating on the plane for Belle and I. The prices weren't nearly as astronomical as I feared they would be - but they're booked, and were fully paid for by YOU! The funding and donations to Annabelle are what will be helping us fly and stay in a hotel while we're getting answers and treatment. Thank you, tremendously for all you've done - without you - we may not be able to fight for all the answers Belle deserves. With your donations - we can travel safely and stay near the best hospital in the country for our little girl. Thank you so so much!

On the other side of things, we're getting excited, eager and nervous all at the same time. We have been waiting for this moment for years - the appointment in which may be the answer for all our prayers: "A diagnosis for Annabelle". I do not wish for a label for my daughter, Dear Heavens, a label is so dangerous - it opens up a box of heartache and hurdles to jump for the rest of our lives. But there is hope and promise within a printed label. With a diagnosis, we will learn what has happened to her little body all along, we will learn how to care for Annabelle and what makes her sick vs what makes her thrive. We can rationalize and repair any damages that may have been done to her little system and we can proactively plan for her future. We can make so many decisions, and hopefully relieve some of her burdens (goodbye feeding tube? hahaha - a momma can dream, can't she?!) In the next few weeks, our family may finally get the opportunity to understand this incredible little girl, and being on the cusp of that moment - is just more anticipation than I ever knew possible.

This weekend is such a great distraction from thinking too much on the upcoming trip. We cannot wait to see so many friends and family that have supported Annabelle, whether it be just for a few weeks or for years since before she was born. This amazing little girl has been in prayers for quite some time, and I am just honored to be able to finally put faces with names, embrace those that mean the world to us in the tightest hugs you can imagine. I cannot wait for you all to see Annabelle and watch her strength, personality, energy and genuine love for life just bursting around you. She brings light and hope to every room she walks into - and we are looking forward to sharing that with you!

Again, if you need directions or more information on this weekends Benefit for BabyBelle, please let me know. Everyone is invited and we welcome you to join in the fun :) xo

Tuesday, September 23, 2014

Two steps in the right direction!

Where there is good, there is always the bad. Two steps forward and one step back seems to be the direction in which our family walks. This week was no different.. at least we did move two forward; it’s the weeks in which we move two steps backwards and only one step forward that make seeing the light a bit more difficult.

First and foremost – Annabelle is doing great right now. Her spirits are high, her cough from being intubated during the procedure is getting better, her energy is great and …. She’s now three. THREE! Can you believe it? A year ago from this time, I didn’t know we would make it to see her second birthday, and here we are celebrating her third and she looks so happy. 

Our rendition of a safe cake for Annabelle:

Miracles are happening all around us. We are in no way out of the woods, we are simply treading by the grace of god and prayers that things are going so well right now – but I do believe there is a light and we will have answers for this little girl soon. If we have made it this far, without a doubt, we will finish this marathon with flying colors! albeit, probably a little beat up, exhausted, broke and not quite in the same form we began the race – but our family will come out on the other side with great hope, forever changed and stronger than we could have imagined!

Biopsy Results Are In
Just as a reminder, in the spring when Annabelle relapsed, her Eosinophil count was higher than we have ever seen, she had over 50 eosinophils in the upper portion of her esophagus and more than 20 in the lower portion. The scope and biopsys collected last week are great! (Yes, do a happy dance!!!!!!!) There are ZERO eosinophils in the bottom of her esophagus and more than 10 in the top. This is the best news. It means we’re gaining control of the disease. The horrible drugs she is on and little food she eat, is actually a cocktail that is working to protect Annabelle’s GI system!
So for now, we cannot make any changes to our current treatment. Although the Eosinophil count in her esophagus is very low, it’s still a failed scope and means the eosinophilic esophaghitis is still active. We will continue the prednisone twice x day and continue the limited diet. We cannot introduce any new foods, but we also are not losing any foods! (Again, HAPPY DANCE!)

Now for the other side of these results. While we continue to do the happy dance, there is also another perspective that isn’t being ignored by our doctors.

When Annabelle’s labs were performed a few weeks ago, they indicated her immune system was struggling / fighting. Her eosinophil count was higher than we have ever seen in her labwork and secretly we prayed the biopsys from her esophagus would reflect those high results. They didn’t..which is likely a result that the treatment we have been doing specifically for her esophagus: pouring steroids down the kids throat twice a day and not allowing her to eat much food. This seems to be the key in keeping the eosinphils out of places they shouldn’t be (her esophagus). The problem though, if the eosinophils are NOT high and present in her esophagus, where we have typically found them… then where are they?! Has the disease spread to other areas of her body? Is her immune system being challenged by another form of auto-immune disorder we aren’t recognizing? Likely, yes – which is what we have assumed all along.

So what does this mean?
The biopsys from this scope have helped us. They’ve proven that Annabelle’s system is not only targeted by an Eosinophilic Disorder. They’ve proven yet again that something far larger and global is happening within her tiny body and Eosinophilic Esophaghitis, while terribly dangerous and life-altering, isn’t the main aspect we should be focusing on. We need to determine what is attacking and what global disease or disorder is Annabelle battling that could be the root cause to all her problems.  

What are we going to do?
With all our labs, old and new information, and our biopsy results – we have contacted the absolute best hospital for children with rare auto-immune disorders. They heard our story, reviewed Annabelle’s records and asked to see her immediately – in fact, they wanted to see her this week. As must as we absolutely would love to make that happen, this trip is going to require time away from work, flights, hotels and lots of travel… we couldn’t commit to a date this soon. We scheduled for the last week of October. They are so very eager to see Annabelle and help our family. I have spent numerous hours in the evenings making arrangements with their medical staff and providing necessary documents and test results. I feel like we have so many pieces of the puzzle and this last scope was just what we needed to prove what our intuitions have been guiding all along. Annabelle will be seen with one of the best Immunologist in the country and he will lead the rest of her team consisting of Gastroenterology, Allergy, Genetics, Endocrine and Neurology.

Our hearts are beyond thrilled, the anticipation and excitement for HOPE for our baby girl is more than you can ever imagine. The only feeling I can relate this monumental high from are those moments when you see your child for the first time and you fall so deeply, passionately in love that you could scream from the roof tops how happy you are, how much you are bursting with love and for how your life has just changed. That is literally the feeling we have right now. I have yet to look at my daughter without instantly wearing a smile because now I know, there is hope.

  • There will be promise for light in our family. Finally, we are going to learn what is happening to our daughter and I will learn how to safely continue to raise her and retain the smile across her innocent little face.
  • Finally, I can explain to the curious and worried big sister, what is truly ‘wrong’ with her sissy and I can help her understand what it means. I can teach my 5yo how we can help her.
  • As parents, we can finally answer to our far-too-mature 3yo, why her little body hurts, why she cannot go outside, why she must wear a mask, wear a tubey, become a pin cushion, and why her little legs just don’t work when she gets too tired.
  • Hopefully I can begin to understand her pains and irrational body responses to simple childhood things like an ear infection.
  • As a mommy, I can comfort my baby and genuinely begin to understand what hurts and why.
  • I can comfort and protect my daughter and not constantly fear that I will accidentally hurt her bc her body just doesn’t respond like a normal toddlers should.

These fears, wishes, worries and hopes that flood our family and haunt AK and I as parents are the only prayers we wish to be answered, they’re all we want for our family right now.

In one month we will travel hundreds of miles away, with no questions asked and only one simple focus: Hope for Annabelle. The light we have been searching for years, the prayers you all have silently prayed to help our family, it’s visible and I couldn’t be more blessed and humble to have you all supporting and cheering our family on. Thank you so very much. Sincerely, from the bottom of our hearts, thank you!

If anyone that has traveled for medical purposes or has any suggestions or helpful advice, please please share. I will likely be traveling alone with Annabelle due to the costs of travel for both AK and I to go together. This trip will cost our family tremendously and I have no idea how to begin making arrangements:

  • Flights
  • Hotel
  • Transportation when we get into the city
  • Unpaid, lost time from work
  • And the possibility of insurance denials since we are traveling out of the state.
  • Without a doubt, the costs for tests, procedures and consultations with a slew of doctors – praying with the help of some type of insurance coverage.

 If you would like to help or support Annabelle, her benefit and fun night out is planned October 4th!! Please, join us and wish this little girl all the luck in the world as she travels towards the light at the end of her tunnel and finally gets answers she deserves. If you need directions or more information, email me and I am happy to share:

Thank you all so very much, from the bottom of our hearts we love, pray and thank all of you for your selfless support for Annabelle and our family. We hope to see you all very soon and will continue to keep you up to date as we move forward!