Tuesday, June 30, 2015

Tuesday Update

This is going to be an update on what we've been up to and how things are going. I will update once we are home about conversations with the doctors and our teams and what findings are looking like. I want to do it this way for a couple reasons: 1) my baby girl needs cuddles and my attention 24/7 while we're here 2) when I share what the doctors are saying, I want to explain the information clearly for everyone to understand. 3) we don't want to speak too soon and get our hopes up. Right now, Annabelle is looking really good based on the surgery - we are praying with all our might the biopsy results reflect the same. 


Monday's surgery was a roller coaster of emotions. I told Annabelle about an hour before we were scheduled to go to the ER that she was going to see the doctors and they would give her medicine to make her sleepy so they can look at her tummy. She immediately got upset and this began an hour of pleading to go home. She was terribly nervous but fear quickly escalated into surrendering. 



She rode in the wheelchair silently with a head dropped. I tried talking to her and she wouldn't even look our way. She was heartbroken and knew we wouldn't help her. Once in pre-op, she climbed out the wheelchair and onto my lap and cried to leave and go home. She said Cincinnati isn't fun anymore and wants to go home. 



We met the Anesthesia team and after reviewing the game plan again, they were ready. 



They gave her two doses of Versed and within a minute, she was loopy and drunk. Her tears and fears turned into giggling. We walked down the hall and I asked to be with her in the OR until she was down but they wouldn't let me. We had to say goodbye in the hallway and I gave her a kiss on her forehead. AK did the same, although she was entirely too disoriented to know what was going on. 



Annabelle and Lambie rode to the OR together. We checked into the surgical waiting area.


Half way thru surgery, we were called into a consultation room to speak with the doctors nurse. She informed us what the doctor saw while in the OR and we spoke briefly about game plans. We walked out of that small room in a daze. I didn't walk back to our chairs as before, they were too far away. I fell into the first chairs available and stared out the window in utter disbelief. For several minutes we didn't speak. AK mumbled "how is this happening?" .... "I don't know.. I ..... Don't understand.."


A little while later I heard another nurse mumble Annabrlles name and we jumped out our chairs to meet her. The nurse said we could see our daughter and we followed her back to post-op. I could hear her cries from the moment we entered the room. 



Annabelle did NOT come out of this surgery nearly as comfortable as she did the last time. She was disoriented and in visible pain, as expected. Her cries were raspy and her hands and body were trembling. Annabelle usually comes out of anesthesia and can recognize is within 15m from the time she's awake, however 10m later she still was not close to waking up. 



I climbed in the bed and laid her limp body across my chest and sang her song slowly to calm her down. She still wasn't coming back to us.. My heart wouldn't stop racing as it shattered "my baby is scared and in pain and she doesn't have a clue who I am.. I have absolutely no way to console her :("

After 40m we decided it would probably be best that we take Annabelle back to her room upstairs where she would be more comfortable and I could cut on Frozen. 
They transported us together on the bed until we got to her room and I tucked Annabelle in her own bed with fresh sheets and a warm blanket. She still didn't wake up or hardly open her eyes. While AK took care of logistics, I cuddled my baby girl and ran my fingers thru her hair until she stopped crying. We both slept for almost two hours together. When she woke later, she was happy. Sore and raspy but happy to see us.



We discharged late yesterday evening and checked into the hotel around the block. Annabelle was hungry but unable to eat much at all for dinner. I laid in the bed with her early and before we knew it, we were both asleep and it was 830am Tuesday. 



Today has been good. She asked for donuts this morning, and although she shouldn't have them, I have in and we found a Dunkin Donuts where they had a billion donut holes to choose from. She ate 1 and couldn't eat any more because of her tummy and throat being so sore. 


Her lower GI is still unsettled. She's been passing blood in her stool and in her diaper, as expected from surgery but otherwise I think she's recovering well. Her throat hurts but she doesn't seem to be developing a cough as she does often times after intubation. She is very weak and hasn't walked much at all since Saturday.. We aren't pushing it though and just letting her lay in the stroller or we carry her when we're doing something. Her little body needs the rest. 


We saw the Geneticist today.




 I will update later on our conversation but at the end of the visit, he ordered fresh labs outside of the numerous  blood they took during surgery. The moment I told Annabelle we needed to do labwork and pokes, she broke down. The largest crocodile tears you've ever seen and again pleading for us not to take her. She was scared of everything, she panicked every time a nurse came in the room, she jumped any time we moved her stroller. She covered her arms as tightly as she could. She begged to go home as many times as she could repeat the words. 



We headed towards the lab where all hell broke loose the moment we were escorted to our own room. I have held this baby down for more tests, procedures, needles and pricks than I care to admit - but I have to say, I have never ever ever seen her act the way she did today. She hit a major fight or flight moment and lost all control and faith in mommy and daddy. She screamed to the top of her lungs and thrashed her body around to get away. I apologized multiple times to the nurse as I tried holding Annabelle down. It was nearly impossible. We ended up moving to another room where I could lay her on a bed vs holding her in my lap. It was easier to retrain her there. After a few minutes looking for a good vein, they made the stick. She dug for nearly 20 seconds until blood began to move. As soon as the blood began filling, the nurse let the needle go and turned away to read the tubes.. The nurse then got frustrated with Annabelle for yelling Bc she was apparently pushing the needle from her arm. I'm not a nurse but why she didn't just hold it there is beyond me. Soon, the blood began to stop and the nurse and her assistant argued over what to do next. AK and I stared at each other in disbelief as they dug in her arm and we held our baby down. 
They pulled the needle and I room Annnabelle out of the room. We also needed a urine sample as well, so I took her potty as I tried calming her down. She could hardly catch her breath and wouldn't look at me at all. She just kept repeating that she wanted to leave right now and that we are mean to her. We don't love her and she wants to go home. My heart was broken. I walked her back into the room of hell where the nurse and her assistant were waiting for us to return. It was time for another shot at getting the rest of the labs. 

I stood on the verge of tears and told AK I needed to walk away. I am so tired of being the bad guy that consistently disappoints my child. I am supposed to protect her from harm, be her advocate and voice. But far more often, in her eyes, I am the one that holds her down or subjects her to pain myself. It's taken me nearly a year to build the trust back up with Annabelle, for her to believe that I do love her and protect her. That all washed away like a flood today as she looked at me past the nurses holding her down while she screamed to the top of her lungs. 

I couldn't stay on the other side of the room long, they needed the extra set of hands to hold her legs and hips down, so I stepped back in. 

6 IVs and blood draws in two days, Annabelle was DONE! I picked her up and tried placing her head on my shoulder and she wiggled down, "NO mommy!". She climbed in the stroller on her own and we walked away as she sniffled.


We asked repeatedly, do you want me to hold you hunny? "No!"
I love you Annabelle. ..... Nothing........ I want to go home, now. 


AK is the only one warmed up to her right now. She's visibly heartbroken and exhausted. We are also exhausted, emotionally and physically, over what this week has done to us. Together, as parents of both out kids. It's hard. This crap is HARD!


Annabelle is asleep now and we promised to take her to the zoo when she wakes in the morning. Maybe tomorrow she will forgive us :'(




















Monday, June 29, 2015

First night in Cincinnati

The night was very long, as hospital nights are. Annabelle had multiple impressive BMs (sorry for the poop talk - it's our life). We changed sheets and diapers about every two hours and ultimately ended up just leaving Annabelle in a diaper on chucks pads and a blanket. 

We did have an emergency around 130am - Lambie and the pillowcase became victims to the GI blowout disaster. The meltdown that insued was heart breaking. After hand washing in the sink, I decided to make a dash for the nurses station where they put in all connections and found a washing machine and dryer. By 4am the pillowcase and lamb were saved (praise Jesus!)

AK took the first shift of the night until about 1am and then we switched. We were both exhausted but both needed some amount of unbroken sleep. I took the next shift and slept in the bed with Annabelle for the rest of the night - praying to avoid becoming the next poopy victim. 



This is the longest we have ever gone without feeds or nutrients - the last time we avoided feeds, Annabelle lost consciousness at hour 5 and spent the next week in the ICU. She is doing much better now than she was then, but at 22hrs without any feeds, we are really beginning to push our luck. Annabelle is becoming weak and can no longer stand. She cannot sit up too high in the bed - were praying with everything that she makes it to surgery at 12pm. 

She still has not had clear stools however. Until we get her completely cleaned out, we cannot do surgery. The nurses performed another round of rectal irrigations this morning. Annabelle was trembling as she knew what was about to happen. The pleading as she looks deep into my eyes and begs for it all to stop is becoming increasingly harder to stand against. While holding her tightly in position this morning during the procedure, listening to her screams in my ear - it hit me.. As much pain Annabelle is in each and every time she has a BM at home, no matter how soft it is - it's always excruciating. This massive tube they're pushing into her bottom has got to be painful. Her little body pours sweat and chills during the procedure as it takes her breath away from the pain. Fortunately our nurses are very quick for the procedure and it only lasts about 15min. 

Annabelle is so brave but yet so defeated in this battle. She's cried a lot this morning to go home and tell me how much she does not like to see doctors all the time. My heart aches for my baby. My heart crumbles for my husband as I watch his face in horror over what's happening to our daughter. 

Pray for strength today friends. Strength to Annabelle that she remains safe and stable to the OR and makes it the entire surgery without issues. Pray for AK and I as we move to our next appointments this morning to meet the brains behind this disease. 


http://www.youtube.com/watch?v=h1OUSK6B5u8







First night in Cincinnati

The night was very long, as hospital nights are. Annabelle had multiple impressive BMs (sorry for the poop talk - it's our life). We changed sheets and diapers about every two hours and ultimately ended up just leaving Annabelle in a diaper on chucks pads and a blanket. 

We did have an emergency around 130am - Lambie and the pillowcase became victims to the GI blowout disaster. The meltdown that insued was heart breaking. After hand washing in the sink, I decided to make a dash for the nurses station where they put in all connections and found a washing machine and dryer. By 4am the pillowcase and lamb were saved (praise Jesus!)

AK took the first shift of the night until about 1am and then we switched. We were both exhausted but both needed some amount of unbroken sleep. I took the next shift and slept in the bed with Annabelle for the rest of the night - praying to avoid becoming the next poopy victim. 


This is the longest we have ever gone without feeds or nutrients - the last time we avoided feeds, Annabelle lost consciousness at hour 5 and spent the next week in the ICU. She is doing much better now than she was then, but at 22hrs without any feeds, we are really beginning to push our luck. Annabelle is becoming weak and can no longer stand. She cannot sit up too high in the bed - were praying with everything that she makes it to surgery at 12pm. 

She still has not had clear stools however. Until we get her completely cleaned out, we cannot do surgery. The nurses performed another round of rectal irrigations this morning. Annabelle was trembling as she knew what was about to happen. The pleading as she looks deep into my eyes and begs for it all to stop is becoming increasingly harder to stand against. While holding her tightly in position this morning during the procedure, listening to her screams in my ear - it hit me.. As much pain Annabelle is in each and every time she has a BM at home, no matter how soft it is - it's always excruciating. This massive tube they're pushing into her bottom has got to be painful. Her little body pours sweat and chills during the procedure as it takes her breath away from the pain. Fortunately our nurses are very quick for the procedure and it only lasts about 15min. 

Annabelle is so brave but yet so defeated in this battle. She's cried a lot this morning to go home and tell me how much she does not like to see doctors all the time. My heart aches for my baby. My heart crumbles for my husband as I watch his face in horror over what's happening to our daughter. 

Pray for strength today friends. Strength to Annabelle that she remains safe and stable to the OR and makes it the entire surgery without issues. Pray for AK and I as we move to our next appointments this morning to meet the brains behind this disease. 









Sunday, June 28, 2015

Waiting to leave!

I wish I had the time to post about the event and how incredibly grateful and happy we are at the turnout.. Let's just say that despite the weather, the event was better than I could imagine. The proceeds raised exceeded our wildest dreams and they were just enough for Cincinnati. What a relief of a burden it is to be lifted from our minds as we head to Ohio this morning. 

On the way home from the event, I received a text message that made my heart stop. It was he pilot for the first leg of the flights - he said turbulence looks to be moderate around the mountains which may cancel our opportunity to fly. With a house full of family and friends, we all looked at one another with huge eyes - blinking silently. I knew this was a possibility but I didn't quite have a backup plan for it in place. 

AK was leaving within the hour. If we couldn't make the flight the next morning, we would need to get in the car and start driving right away. I checked the commercial flights and there were very few seats available. 

After talking on the phone with the pilot, I felt comfortable enough to tell AK to get on the road without us and we would try for the flight in the morning. 

He made it until about 1am and stopped in W. Virginia to sleep. He has about 4hrs left of a drive before getting to the hospital. 

Annabelle had a comfortable night last night. I gave her some pain meds before she fell asleep. Madelynne fell asleep just as easily, however by 1am I still couldn't sleep myself. I crawled into Madys bed and slept with her the rest of the night. I already miss my big girl so much it hurts :(

The pilot texted at 7am this morning and arrived at the airport around 745a. We're at the airport now and flights appear to look good, however there is still turbulence in the path were headed. We are going to wait it out for an hour or so before we leave. Annabelle is snuggled in her stroller playing a game... She knows where we're headed but hasn't appeared to be upset by it yet. Fingers crossed for a safe flight this morning! I'll update when we get to WV. 














Day 1: Surgery Prep

The first flight was delayed for over an hour due to the turbulence over the mountains. When it was finally time, Annabelle was so eager to get on the airplane that she completely forgot the purpose of our flight (thank goodness!)

We walked to our plane and I joked about the intense security (none) as I sipped my topped off coffee (more than 3oz mind you) and no one checked my bags, hehe. 


The pilot helped Annabelle climb into the plane and buckled her in safely, he climbed in next and finally it was my turn to walk on the wing and climb into a tight 4 seater airplane.. Terrifying at first but would quickly become my favorite flight this far in life. 






I think Annabelle's favorite part of the flight was the headset as she carried a conversation 8,000ft in the sky. 


The flight was amazing. So very different from a commercial flight but exhilarating. Annabelle did a wonderful job for the first hour but quickly became nauseated and uncomfortable. I gave her some medications and within a few minutes, the rumbling sounds of the plane and vibrations rocked her right to sleep. She got a solid hour at least of a nap. I on the other hand froze my tush off (no one warned me that air circulates off th wing into the jet on these planes and apparently air way above the clouds is like ICE! 



We arrived in Clarksburg WV for our second leg. It was pouring rain, freezing cold and overcast. I couldn't wait to get out of the city.

 Annabelle needed to potty - I took her and of course she didn't go. We met our second pilot and quickly boarded the plane. Cincinnati had already been calling because we were running late, though each time I called back - I spoke with a charge nurse and admitting but the messages just never seemed to be getting thru (it ended up not being a problem at all). 

The second plane was significantly larger but very very dated and scared the crud out of me. Now that we're on the ground, I can say it was the wildest roller coaster and SO fun! Annabelle squealed almost the entire flight with her arms up laughing. She seriously thought she was at a theme park on a ride. It was wild but fun. 



AK met us with the biggest smile as we walked out of the airport. Belle was so happy to see her daddy. While on the road she asked if we could just go home.. That's about the time when it hit her where we are...... With that said, pray for us - it hasn't been easy since arriving in the hospital.

Admitting was fast and efficient. 



Once settled into our room, Annabelle began crying to go home. She begged for any opportunity to leave. 

Since we were already a couple hours late - getting settled was very fast. We began an IV within 20m of getting to our room. The first stick, where I asked her to place it Bc it's our easiest guaranteed stick for an IV - the nurse got it but couldn't flush the site .. It was just bad placement. Annabelle was crying so hard to stop finagling the IV site that they finally asked me what I would like to do. I asked "do you think it will work thru tomorrow night for the surgery..?" They both said, not likely. So I asked to find a better spot. God I hate making those decision.. Ones that subject my baby to more and more pain - but it is what it is and these are the things I knew the week would be about ..... Unfortunately. 



Soon after the IV was set and fluids began, I started talking with doctors and nurses. Our intake and consults began this evening. When she asked if I brought any paperwork, labs or pathology reports with me, I was happy to produce my bibles:



She took all my books that are slammed full of relevant medical records for why we're here (the others are all at home) and had a field day with it. We came up with a game plan and Cincinnati Childrens strongly encouraged we perform the prep with their speciality treatments ... We are on the inpatient GI floor and have all the best of the best nurses and doctors right here that really understand a kid with GI issues. 

We began with Golytley (sp) at 200ml/hr via gtube/pump. For reference, I never feed Annabelle a fast feed over 120ml/hr. But somehow Annabelle is tolerating it! 

Around 6pm we began enemas and she fought that, screaming her heart out to stop. As soon as it was finished she asked if it got the booboos out of her tummy.. I said not yet sweetly, she responded "when they're gone, can I eat pizza like my friends?" My heart skipped a beat. 



Child Life came by and brought Annabelle some coloring supplies and also a doll to demonstrate the next procedure they would do, a Rectal Irrigation. Talk about nauseating and miserable to hold your baby down for. She looks traumatized, and she is. Apparently we will repeat this 15m process every hour if her vowels do not start working better on their own (knowing my kid... This is a likely scenario that I hate!) 

I am exhausted and can't stop thinking about Mady. 
Annabelle keeps asking if she can eat pizza since she's come to Cincinnati and been tortured. Little does she know, the real fun hasn't even begun. 
AK is exhausted from driving for two days. 

But we're together and were committed to making this week every bit of what Annabelle deserves from it. We just need a little rest first. 



Side Note; this hospital is insanely state of the art and beautiful. The TV is the smartest, coolest thing I've ever operated in my life. All the rooms and the hospital in general are decorated so fun for children and geared towards the future and making a difference. 



The nurses are angels and I know we're in great hands. Keep us in your prayers tonight. Pray for courage and strength for Annabelle tonight and please say the biggest prayer for a safe surgery tomorrow. 

Monday:
9am appointment with GI
12pm surgery begins 






Waiting to leave!

I wish I had the time to post about the event and how incredibly grateful and happy we are at the turnout.. Let's just say that despite the weather, the event was better than I could imagine. The proceeds raised exceeded our wildest dreams and they were just enough for Cincinnati. What a relief of a burden it is to be lifted from our minds as we head to Ohio this morning. 

On the way home from the event, I received a text message that made my heart stop. It was he pilot for the first leg of the flights - he said turbulence looks to be moderate around the mountains which may cancel our opportunity to fly. With a house full of family and friends, we all looked at one another with huge eyes - blinking silently. I knew this was a possibility but I didn't quite have a backup plan for it in place. 

AK was leaving within the hour. If we couldn't make the flight the next morning, we would need to get in the car and start driving right away. I checked the commercial flights and there were very few seats available. 

After talking on the phone with the pilot, I felt comfortable enough to tell AK to get on the road without us and we would try for the flight in the morning. 

He made it until about 1am and stopped in W. Virginia to sleep. He has about 4hrs left of a drive before getting to the hospital. 

Annabelle had a comfortable night last night. I gave her some pain meds before she fell asleep. Madelynne fell asleep just as easily, however by 1am I still couldn't sleep myself. I crawled into Madys bed and slept with her the rest of the night. I already miss my big girl so much it hurts :(

The pilot texted at 7am this morning and arrived at the airport around 745a. We're at the airport now and flights appear to look good, however there is still turbulence in the path were headed. We are going to wait it out for an hour or so before we leave. Annabelle is snuggled in her stroller playing a game... She knows where we're headed but hasn't appeared to be upset by it yet. Fingers crossed for a safe flight this morning! I'll update when we get to WV. 














Friday, June 26, 2015

The day is almost here!!

II'm Annabelle's adorable outfit is laid out and ready, she's snoozing sound in bed and trust me - she is SO VERY ready to party! 

We are exhausted. I've fought back tears literally all day and had a very hard time focusing and getting things packed and ready. 

Thank goodness my best friend is in town to rescue me. Before Belle and I woke this morning, she and Mady had already left the house, bought donuts, coffee and flowers. It was a great start to the day but very quickly escalated to stress once Annabelle found out we had to go to the doctors for her Pre-op appointment. She cried with the most heartbreaking crocodile tears I've ever seen, pleading not to go to the doctors. I think she knows the time has arrived. She's realized that tomorrow is the day of the party and she knows the following day = hospital. She panicked .. She panicked harder than I even knew a 3yo could panic. She was hysterical that I could hardly hold her or contain her. Like a terrible tantrum but out of complete fear - her body trembled as she dry heaved begging not to go to cincinnati. If she is this heartbroken now, I cannot imagine what Sunday morning will look like as we board the plane :'(

Annabelle calmed down once we got to the doctors office. The first question our doctor had was "what's that smell?!" ..... Sadly, it's Annabelle's breath and her overall odor. Her body smells like orange juice or syrup, while her breath and mouth smells like pure stool Bc of her failing GI system. Her doctor dropped her head in dispair and we began our conversation of all our hopes and wishes for Cincinnati Ohio. 

After lunch, we took the girls to paint their fingernails purple and Andi suggested that we drop them off with AK at the house so I could get out and exhale while we did some last minute shopping.


 It was a great idea Bc a few hours later, I found myself sitting in my closet trying to pack with tears filling my eyes. I am a walking basket case but refuse to let a tear fall. I pray tomorrow isn't that day!!! 

Which brings me to the purpose behind this post, I wanted to share just a few things before the event tomorrow.. Some courtesy reminders and a lot of gratitude to everyone who makes the trip out to see us. 


- Remember, Annabelle suffers from an auto-immune disease. If you're sick or have recently been sick, please blow kisses from a distance at the party ;) no smooches! Wash hands as much as you can. We will have bottles of hand sanitizer everywhere so help yourself. 

- Do not feed the animal... Errr... Child. Please, please, I cannot stress enough - do NOT offer Annabelle absolutely anything to eat. 

- If you do pick her up and snuggle her, be mindful of the tubey in her tummy. She guards it pretty closely, but the excitement may be distracting and no one wants booboos at a party! 

- Take a minute to thank the Guilty Ones for all their hard work and commitment to this event and Annabelle. Without them, there is no way a party like this could happen. 

- Respect the property and church that is so gracious to host the event. The lobby will be open for restrooms and to entertain if the weather is too bad. Please do not litter or disrespect any of the property or church.

- Bring cash. There will be many fun events going on during the day, merchandise, raffles, tournaments etc that I know you'll want to participate in. Remember .. Every single penny goes towards trip to Cincinnati. Our current bill is at $13,000 ... We have no idea what the final total will be until we return. Every penny to help this burden is appreciated so we can continue to provide for Annabelle with all her other nerds. (Meds, appointments, care, supplies, etc)

Most importantly, Rain or Shine, have a wonderful time and know how much we appreciate and love each and every one of you for coming out! Make sure you find me for a hug... we do hugs and not hand shakes in our family ;)


Xoxo





CBS6 Features Answers for Annabelle

A day that began with a text message "Did you see this? Annabelle is in the news paper!" what?!




In the midst of panicking about the week and trying to focus on work, my phone rings. "Hello, this is Ashley." (yea, unfortunately this is how I answer my CELL PHONE these days.. ). "Hi! My name is Chelsea with CBS6 and we heard about your little girl and would love to interview her, could we meet this afternoon?" My mouth dropped and stomach sank, "Umm. Yes, certainly, but.... Im still at work so we won't be able to see you for a few hours, Im really sorry."

My house was a disaster because I just can't focus. I haven't washed my hair in two days and my car was still at the dealership getting an oil change. Holy whirlwind!

The night was so incredibly fast that I cannot recall the hours between 4:30p when I received the phone call at work and 6:15p when CBS6 showed up at my doorstep. Guilty Ones MC arrived a few minutes before the news channel did, I laughed at them and shook my head as they walked towards my door. "Do you believe this?". We all laughed together and couldn't believe the out pour of love and attention for sweet Annabelle. We were all a bit restless so I offered the best suggestion, "How about we have a toast before they get here?" .... CHEERS! To all of you, CHEERS to Annabelle and her courageousness to fight her battle, CHEERS to the community support for standing behind her!!

A few minutes later the night picked up speed all over again. Annabelle was full of herself when she saw all the people in her home, she ran and laughed and hugged everyone. Chelsea, the news anchor, was as sweet as ever and explained how the evening would work. We spent the next two hours talking, giving her the back story to how Answers for Annabelle began and explaining the battles Annabelle is fighting.








Annabelle did so wonderful until we had to begin her feeding. Her feedings lately are so painful that she cries and moans the entire time. I am truly grateful those moments were not aired on TV, I hate to see her in pain and don't like anyone else to have to witness it either. She was so tough though, she pushed thru the pain and just kept whispering in my ear, "Please mommy, unhook my tubey, please!" I rocked her on my shoulder and we continued the interview.

I believe CBS6 did a beautiful job articulating Answers for Annabelle and what it's about. They highlighted our struggles for securing a venue, which truly, were a heartbreaking setback to be denied repeatedly, over and over by SO many places that didn't want to allow us to celebrate Annabelle at their location. I am so grateful for Life Church for picking us up for all the right reasons and I cannot wait to meet the pastor and get to know them all.

http://wtvr.com/2015/06/25/motorcycle-club-helping-raise-money-for-hanover-girl-battling-rare-disease/

While the attention for Annabelle and sharing her story is exciting for our family, the biggest blessing of all comes from the love and support of the Guilty Ones MC. I am so very grateful for their dedication to our family, their honesty, genuine love for Annabelle. Bikers truly get a bad rap bc of the few that make poor life choices with a gang and ride motorcycles. I have come to learn that the VAST majority of those that ride, are just like our new friends from the Guilty Ones. They ride with a heart on their sleeve. They're judged harshly by the public. They're perceived to be criminals, intimidating, terrorizing society and disobeying the law. When in reality, they wear leather, tattoos and rally behind the most important, American, honest and needing of stories. The stories that you don't hear about, Answers for Annabelle, Smiles for Jasmine. They rally and come together for the best causes and form a brotherhood without knowing one another. The media highlights the small minority of bikers that ARE intimidating and disobey the law - but they never highlight the floods of bikers that are riding the streets on two wheels and doing God's work for the community and perfect strangers.

Thank you CBS6 for putting our dear friends in the spotlight and showing the community what they truly represent. Thank you so very much Life Church for seeing past the tattoos and seeing the dedication a group has for a sweet little 3-year old that needs and deserves this rallying.

Thank you friends and family for sharing the story and tuning in.


Final thoughts,
HOLY CRAP! WERE CELEBRITY'S!!! pahaha
Big Time in a Small Town, you go Annabelle. Keep rocking on sweet girl ;)



Monday, June 22, 2015

Planning and Packing.. mostly Panicking.

AK and I are walking around our house.. slowly and silently passing one another like gunslingers on the verge of tears. I thought I was prepared for this week and what was about to come, but I am everything but prepared. The hard shell I have worn to guard my mind and mommy heart has disappeared - I'm left raw and exposed to every emotion, fear, worry, anger and grief imaginable. Annabelle knows we are headed to Ohio. Madelynne reminds me in the car each morning.. only 6 more days now, mommy.

For three years we have prayed for answers for our daughter. For three years we have been told great news, awful news, promising and grim predictions of our child's health and life. Because Richmond's doctors are not very experienced in this rare disease and whatever unknown issues she also carries, we have become so skeptical each and every time we hear a doctors report. We have trailed so many treatment plans and drugs, subjected our baby to more procedures, excruciating tests and surgeries, for 117 days we did not feed Annabelle anything at all.. we've watched her decline and almost leave us numerous times all because the doctors simply do not understand "Annabelle".

For three years we have prayed for that one doctor to meet our daughter and say "ah-ha! I know exactly what this is! It's rare but I've seen it before!" Those words would be a miracle.

Cincinnati Children's Hospital possesses the top notch doctors that professionally specialize in treating complex children just like Annabelle. 

It's a dream come true that Annabelle has gotten the opportunity to be seen by the country's best team of doctors for her disease. It's a prayer answered as her parents that we will finally have the right doctors aligned to treat her. While we are ecstatic to be headed to Ohio - we are scared out of our minds. For the first time, we will sit down across the table from a doctor that will tell us what is wrong with our baby girl.
He will tell us what they have found during the week of testing and surgeries. 
He will give us an answer, or at least a preliminary diagnosis.
He will give us a responsible treatment plan.
He will tell us the truth and those words, no matter how promising, will cut us deep. 

We are finally going to hear what is happening to our babies body. And I am scared to death to listen!

Pray for us, please. 
Pray for the knowledge and wisdom of the doctors. Pray for the skilled hands that perform surgery on my baby, pray for the gentle anesthesia that keeps her comfortable and asleep during the procedure. Please, pray for the doctors on her team that work together and brainstorm what is happening. Pray that they see something in Annabelle that doctors have never seen before, that they explore an avenue not yet considered but one that holds the answers to her puzzling disease. Pray for that we, as her parents, are able to articulate the ins and outs of what Annabelle has been thru and shown us so that we can give them the information they seek to find answers. Pray for our ability to communicate the right things to the right doctors to generate the right thought processes. Pray that Annabelle is calm and not scared or nervous about the trip to Cincinnati Children's Hospital. Give Annabelle the courage and strength to recover with minimal pain and undergo the painful procedures with little fight. Pray that Annabelle can find it within her to understand that we, as people - mommy, daddy, doctors and nurses, do not subject her to these painful things because we are cruel - but we do so because we are trying our hardest to help her feel better. Give Annabelle the wisdom to embrace all the loving family, friends and strangers that surround her and are praying so hard along side us. Please friends, pray for her sister Madelynne so she does not have to be scared or worried about her family as we leave her behind for a week to fight for her baby sister. Calm her fears and worries when she is scared and bless the caregivers that will stay with her so they understand what she is going thru and will offer extra hugs when they're needed until mommy, daddy and sissy are home. Most of all - pray for our family. Pray that we are able to hear the news we are given next week and embrace it as a new chapter to our life with Annabelle. I pray that doctors are correct in their findings and diagnosis and pray that a treatment plan comes with a better quality of life for our entire family. We are on the cusp of a brand new chapter in the Bishop home, and as with any change, I pray it is smooth and a welcomed chapter. 



Planning.. packing.. working.. panicking.. cleaning.. scheduling and breathing. That is our week.

AK and I both work full-time so taking care of the house, packing and planning is quite a balance that we are barely juggling. The required paperwork for Ohio that must be completed is so intense, it is literally a full-time job in itself. We must journal and document nearly every step of Annabelle's entire day, each day, what she eats, how much, all her BMs and wet diapers / how much, when she slept / how long, etc. Meanwhile - since taking her off all her medications, the way she behaves, eats and feels currently is polar opposite of how she used to behave - so communicating this information accurately is quite difficult.

I also have 5, slammed filled 3-ring binders full of medical records, documentation, CT slides, Pathology slides, Brain scans, blood work, tests etc. that needs to travel with us.. re-organizing that in a way that I can quickly access what a doctor may need during consultation is always fun.

We need to pack enough formula and medical supplies to last us at least 1 week. (you will see just how much 1 week looks like at the event on Saturday. I'll have a table that shows what one week of medical supplies for Annabelle truly is.).
Annabelle also has very specific instructions on other things she would like to pack. In fact, she's already begun to fill every tiny backpack in the house with her random toys and pillowcases (a soft pillowcase and her blanket is essential!).

Tuesday
  • Mommy, Mady and Annabelle are having our fingernails painted and a girls night out together. It's our last night without scheduled plans that we have together before chaos begins to unfold. The girls keep asking me to paint their nails, so I plan to treat them to a fancy night at the nail salon ($6 polish change = BEST NIGHT EVER to a toddler!).
Wednesday
  • Appointment for the cars oil change. They need to take a look and make sure everything looks to be in good shape and safe for AK travel to Ohio and back home to VA, alone Saturday night. 
  • Pack all our bags for Ohio 
  • Pack Mady's bags for the sitter for the week while we are gone
Thursday
  • Annabelle's grandmother has arranged a small fundraiser with her organization, they will have a Taco Dinner and Annabelle will join them for the fun and festivities (not the food of course).
  • While AK and Annabelle are at the dinner, I will be with Madelynne at her swim meet that begins at 6pm and hopefully does not end at midnight. We will miss her swim meet next week while we are in Ohio so I really hope to make this one special for her.
Friday
  • Consultation with MCV & Cincinnati Anesthesia at 9:00am
  • Pre-op authorization to approve Annabelle for surgery, scheduled with our wonderful doctor at 10:30am. 
  • Organize and pack for the Answers for Annabelle event Saturday.
  • Pack the car with our extra things and for AK to get on the road Saturday immediately after the event.
  • Clean the house

Saturday

  • Answers for Annabelle!! I have errands in the morning and hopefully the girls rest at home. I will likely be running back and forth from the venue, getting things together. Then shortly before noon I will meet the bikers and Madelynne, Annabelle and myself will all ride in with all the bikers! Oh, the adrenaline rush. IVE NEVER BEEN ON A BIKE BEFORE! EEK!
  • We will party all day with you guys. And hopefully I will remember NOT to apply mascara to avoid black streaks running down my face from tears of joy. I keep hearing more and more details of the event, and oh my goodness - this is bigger and better than my wildest dreams for Annabelle!
  • Saturday evening, we will leave the event promptly at 6p to head home, shower and say our goodbye's to one another. AK will be getting on the road no later than 8pm and begin the ride to Cincinnati. I will snuggle Madelynne all night with eyes open wide and a heavy heart until Sunday morning.

Sunday
  • Say goodbye to Madelynne give her enough kisses to last a week. I have NEVER been away from her longer than 2 days! 
  • Annabelle and I will head to Hanover Airport to catch our first flight. I have been in communication with the pilot for several days now. He is traveling from Newport News to pick us up, so we plan to meet him at 8am and depart by 8:30am. 
  • We will arrive in Clarksburg WV around 10am and catch the second leg to Cincinnati Ohio Municipal Airport.
  • *Hopefully* AK will have already arrived and be waiting for us to get off the plane. Otherwise I will catch a cab and travel directly to the hospital where Annabelle will be admitted right away and begin prep for Monday's surgery.

That's all within the next 5 days. My head is spinning so fast, I honestly don't know where to focus first. Fortunately, work takes a top priority during the days and provides the best distraction for a worried mind. At this point, our fingers are crossed and prayers are in order that the week unfolds without many hiccups, I am praying for beautiful weather Saturday (currently it looks to be upper 70s and scattered afternoon storms! Yippee!). I also pray for calm weather Sunday so we can catch all our flights to Ohio. Keep our family in your thoughts this week and please, grab me Saturday and make sure I give you the biggest hug in the world. Each and every one of you mean the world to our family and all you do for us. All your prayers and thoughts, kind words and gestures are priceless and we couldn't be more blessed to have you all share the day with us Saturday.

Xoxo,
Ashley



ps. Thank you Daniel for this prayer book, it always has the words that I need to hear..









Sunday, June 14, 2015

Keep Fighting Baby Girl

This weekend was very defining for Annabelle. It's become so clear to AK and I just how bad our little girls body is hurting.

Her lower GI is a mess - it's been over a week again since her last BM. Friday night we could tell she was hurting and not feeling well, she sobbed when we put her to bed and she got up many times during the night. Finally, I opened my blanket and she snuggled in closely; I could feel her gasping and holding her breath as the pain came in waves. She loves her back rubbed and fingers run thru her hair - it calms her down a bit but it doesn't take the pain away.. Nothing seems to take the pain away.

Madelynne had a swim meet at 715a the next morning, we decided I wouldn't go.. Annabelle needed to stay home and sleep. Mady did so good at swimming, my heart shattered I wasn't there for her but her sissy and I laid in bed reading the text message updates and calling AK to hear the Live-Play-by-Play while she swam, it was exciting.. it's just the way our family is learning to do things.

After Belle rested and I gave her meds, she seemed to feel a little better. She asked for Chick-Fil-A so we decided to meet daddy and sissy after swim. While preparing all our meals, AK shouted for my attention, "What's wrong with Annabelle!?!! She's shaking!" We watched her silently and my gut sank to the ground while AK stared at our little girls arms and hands trembling. There just are no words for moments like these. We sat in the middle of a crowded Chick-Fil-A, watching laughter and families rushing all around us. It's like we live in a haze.. .. we don't fit in with these people anymore. On one side of me, I see my strong 6yo, chowing down waffle fries with wet hair and sun-kissed skin. She looks like everyone else in this restaurant. We're a family of four with two little girls enjoying a Saturday afternoon, on the surface we look like everyone else - beneath the surface, our hearts are in our throat and fears are heavier than any burden you can imagine.

It's in these moments that I become angry, bitter and mad at the world - I want to wrap my daughter in my arms and shield her from everything fun around her that she should be able to enjoy but can't. I want to laugh with my husband while our kids play in the play-set.... laugh with him, argue over petty things maybe, plan a grocery list or complain about the heat - I want to do all those things, but instead we sit silently. Planning our exit in case Annabelle begins to seize, analyzing where our medical supply is in our bags in case something happens suddenly and we need to help her. We watch the door and Madelynne in case we need to make a fast exit. I just want Annabelle to laugh and play with her sister while AK and I live like a happy, miserable, hilarious, annoying, typical American couple. Instead, we see the pain in our daughters eyes, hope turns to anger and reality stings like a hornet. Just a typical Saturday.

Annabelle was able to sleep and rest all afternoon. We had a wedding to attend in the evening and as we drove to the venue - AK and I discussed the heat and it's affects on Annabelle. Within 5 minutes sitting outside, her cries were all I could take so I picked her up. Her body was clammy and cool to the touch, it was miserably hot outside but she was no longer sweating. Within literally 10 minutes from our car and her body looses complete control of how to regulate her temperature. AK walked away with her to the shade and water while the ceremony finished.



The evening in the shade unfolded without problems until shortly around 8p when the pain began to hit again. Her medications had worn off and she was crying and begging to go home. We gathered our things and hit the road. One quick picture so we can smile like a pretty family and we were off.... even photoshop can't take pain from my babies face though.


The hysterical cries and screams that poured from Annabelle as we flew up 95 North Saturday night were enough to drop you to your knees. Madelynne sat beside her sissy and held her hand, telling her repeatedly "I love you sissy - it's going to be ok. It's going to get better". Annabelle was in excruciating pain and we have no idea where it's coming from. She cried herself to sleep in her carseat Saturday night.


 The rest of the weekend was exactly the same. Sunday was a different chapter but same story. Around noon, after hours and hours of screaming and what appears Annabelle struggling to finally have a BM - she began to pass some stool. Nothing was hard, it was all soft (sorry, poop talk is just part of medical chit-chat) - nothing was large enough that it hurt, but as she sat on the potty and I kneeled down in front of her eye-to-eye, wiping the tears off her trembling chin, I looked down and could see the blood dripping into the potty from her bottom. We told Annabelle "You will see the doctor very soon, just two more weeks and we will go to Cincinnati to see Dr. Putnam, ok?" Annabelle dropped her head, "Mommy - I want to go to the hospital and see a doctor now, please. Please mommy? Tomorrow we go?" -For anyone that has followed Annabelle's journey or met this kiddo, you know for certain, the last thing in the WORLD she wants to do is to go to a doctor or hospital. She will do ANYTHING to not go to the hospital. For Annabelle to beg to see a doctor speaks volumes. She needs help, and fast!





My baby is being tortured by this god-awful disease. Whatever it is - is destroying our family!! Madelynne asked repeatedly yesterday to share a room with her sissy again. "But Mady - mommy and daddy bought a house so you can both have your own bedroom!" .. "I know, but Annabelle gets scared and her tummy hurts at night, if she is scared she can just come in my bed with me and I will make it better - that way she doesn't have to walk as far." A 6-yo should not have to worry about these things, but I thank God daily that she does. I thank God for giving us such a loving and caring big sister to Annabelle and such a sweetheart of a child to AK and I.






Sunday, June 7, 2015

Slow decline

Each day closer to Cincinnati, is another day further from the day we removed Annabelle from all her medications. Every day she is off the "bandaids" for the disease, she deteriorates even more. Annabelle is so strong and full of life, but right now - she's scaring us. She's in pain and she's so tired.





The stoma around her gtube is in terrible pain. Her little body is deteriorating on the outside just as quickly as it is on the inside. Any and all tissue is a target for this disease. We watched the stoma for a couple days until she couldn't take it any longer and we started pain medication. I also removed some fluid from the balloon of the gtube in hopes that it will lessen the irritation and pressure on her stomach wall.

Her body is becoming so very weak. Annabelle sways between sleeping long periods, laying down everywhere she goes, trying to have fun as a 3yo and play, crying and telling us her tummy and body hurts, or then... My least favorite, she lays motionless and stares into space with wide eyes. I fear what is running thru that little babies mind.
"Why is this happening to me?
Why can't I play like my friends?
Why can't I eat what my family does?
Why does my body hurt so badly?
What did I do wrong?
Why won't mommy and daddy make it better?
Why can't I just be like my sissy and friends?"




She lays silently with the saddest eyes and it leaves us speechless. All we know to do is lay with her. Running our fingers thru her curly hair and telling her just how much she is loved and how proud of her we are for being so strong.

Neurologically, Annabelle is showing us signs that she's declining. We are praying with all our might that she isn't. If so, there is a great chance that it is a result of the protein intake she's getting from her diet. Annabelle's body does not filter protein properly. Her body uses protein for energy and to grow, but the biproduct of protein in anyone's body is ammonia. Annabelle's liver does not filter the ammonia out the way ours does (thru urine), Annabelle's liver filters the ammonia directly into her blood stream.. poisoning her body. First stop, Neurologically (brain). Second stop, her heart and it continues to move on. It took us a long time to learn this was happening, at the time, Annabelle was having repeated seizures, not growing, thriving or talking, she stopped walking and had little balance. We immediately removed protein from her diet and the problems stopped. We have since added protein back into her diet because she wasn't growing, gaining weight or thriving - since adding protein, she has grown hair, finger nails and gained weight... unfortunately though, since coming off her medications, we are not able to balance that protein / ammonia balance as well and we are seeing a direct impact. Cincinnati and time will tell what is happening, our prayers are so strong that what we are seeing is not an impact from the protein (if so, there is a good chance she will loose it from her diet all over again).



She is stumbling and having a harder time with balance and control.
She tires very easily and is sleeping/resting for longer and longer periods of time.
She complains of headaches (her hair hurting while she hits her head).
Fortunately, it's been a few months since her last seizure.
Her left eye is beginning to droop along with her smile.









CINCINNATI UPDATE

Since last week's change of plans in our itinerary, we've exhausted ourselves trying to find the best way to get Annabelle to Cincinnati.She does not do well in a car for a long period of time. Her nausea during feeds at night and in a vehicle is miserable for Annabelle.. and 8hrs does NOT seem like a fun time for any of us to be in the car with her, Annabelle included ;)





The Answers for Annabelle Event is from 12-5p Saturday June 27th (I HOPE TO SEE YOU THERE!), we live a few minutes from the event so we will be able to get Belle back home to rest and snuggle Madelynne. However, we have to be in Cincinnati Ohio, and checked into the hospital by 10am the next morning. Our two options are to either fly first thing Sunday morning or drive Saturday evening after the event. I have reached out to Angel Flights and with enough prayers and fingers crossed, it looks like they are moving the process along in our favor. I got paperwork in the mail to sign over the weekend and I am hoping that is a good indication they are accepting Annabelle and will be able to help fly her to Ohio so we can avoid the drive.



Also - flyers are out and bracelets are available. The bracelets and event tshirts will both be available for sale at the event but if you want a bracelet sooner, let myself or guiltyonesrichmond@gmail.com know and we can find a good place to meet. They are 1/$3 or 2/$5 and come in various sizes. We do still need sponsors and vendors! If you choose to sponsor the event for Annabelle, submit your logo and we will make sure it'll be printed on the event tshirts!! Check out the Answers for Annabelle page here on the blog. I will continue to try to keep any information updated on that page for you all.