Monday, October 27, 2014

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. 

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.

Until tomorrow friends!   

Sunday, October 26, 2014

Hope turns to a flood of worry


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 
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. 


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