Tuesday, July 14, 2015

Hour by Hour

I first want to apologize for not updating you all on how things are going. Honestly, we are having a tough time adjusting back into our routine at home since Cincinnati and it's taking just about all the energy we have. Our families first priority is one another, I know you understand - but I did want to apologize. 
Keeping you updated is very important to us, you are our prayer warriors, you are alive in our home just as much as we are, you love this little girl as much as we do and you deserve to know how things are going. Thank you for being patient with me as we navigate the waters since returning home.

A lot of my hesitation for updating is driven from the simple fact that I want to share good news with you! It BREAKS MY HEART when people talk to me about the blog that the first thing they said was "I cried the whole time reading" - I wish our stories and updates didn't bring you to tears. I wish you could read an update and smile and laugh.. I want you to laugh with us.. heck, I want to be able to smile and laugh at every update on how things are going with Annabelle too. The sad truth is that we don't have a ton of exciting and happy updates.. the painful facts are that Annabelle is in unfair pain, living thru hell, still without answers and heartbroken because she doesn't trust any of us. We try to find the silver lining in each day, we force the laughs and smiles but deep down - we are crying too. We are crying with you. I cry when I update.
I want to wait for only the happy updates on the blog, but they're just not coming our way right now..... so here goes it.

She. Is. Pissed.

Annabelle is still mad as a hornet. A year and a half ago we hired a nurse to care for Annabelle in our home. This provided us (me as mommy, mostly) the ability to step aside as the 'mean person' that subjects her to pain, procedures etc.. once our nurse was hired, it became her responsibility to change her feeding tubes thru tears, she is the one who administers most medications that taste nasty, she gives enemas and I am able to step in afterwards to comfort the tears. It has taken a year and a half for Annabelle to love and trust us again. We ruined all that work within minutes of stepping into Cincinnati Children's Hospital. Annabelle has directly associated me as the one responsible for all the pain she endured while we were there. Daddy was with us, and equally if not more, hands on during the painful processes - but Annabelle blames me.

I can process the blame because I know we were doing what is best for Annabelle. Two weeks later however, she reminds me daily that she is mad at me.. she doesn't like me very much.. she fights anything I ask her to do.. she gives me evil looks from down the hallway. It's heart SHATTERING to see yourself thru your daughters eyes as evil, a disappointment, a trader, not the comforting mommy but the liar that said she would protect her.

I don't know how to overcome this on my own. In our home, we try our hardest to stick to our guns on the rules and expectations for behavior. We have high standards for our kids, their manners, respect and minding. That being said.. we also weigh "pick your battles" on a daily basis. Annabelle has delivered us a flood of battles and they're getting harder to pick.

Case and Point
Annabelle demands with an angry tone. "IM HUNGRY! MAKE ME APPLESAUCE!"
I stare at her. Zero emotion. I didn't get mad at her or put her in timeout for the attitude.. I just stare at her and walk away.. trying to ignore all the anger she is demanding I hear in her voice.

Annabelle: Applesauce, PLEASE!

Me: Thank you for using your manners, but please don't yell at mommy - goodness it hurts my ears! Do you want a pink or purple bowl AnnaBanana?

Annabelle: .....pink.....

I made her applesauce and kept cleaning and moving about the house. Her attitude subsided when she began to eat. I had music playing and was singing like a goofball in hopes she would remember how silly I am and try to enjoy our time together. . . didn't work, she told me to stop singing because it didn't sound very pretty. (In her defense, she's right. Im an awful singer! lol)

10min have passed and I come back downstairs

Me: How's that applesauce? You just about done?

Annabelle looks right up at me. Looks back down at her bowl. Looks back at me and picks her bowl up. We have a stare off... I wasn't sure what she wanted or was doing, she didn't say anything.
She then lifts her bowl off the counter, while locking eyes with me and drops the bowl of applesauce on the floor. Splatter. Applesauce on the walls, cabinets, chair, floors, everywhere.
. . . . she marches away.

This is our life. She is so ticked it isn't funny. This isn't a 3yr old tantrum. This is a heartbroken, mad to the core child that was just tortured and feels like no one is in her corner anymore. This is a little girl that is filled with anger and doesn't know how to channel it.

She's putting us in these situations constantly. Her behavior is NOT allowed in our house. However, we are allowing her the space she needs to finish her bitterness. I hope we can figure out how to help her channel this anger. I hope she's able to overcome what Cincinnati has done to us and remember how much mommy and daddy genuinely love her. I hope she doesn't remember that the week before we go back to Cincinnati and repeat this hell all over again. :(

Since she isn't communicating well with us anymore, it's hard to gauge how she's feeling. She often tells us she is hurting but the conversation is short and is quickly dismissed by the time I ask her to be specific "what hurts baby?" The other night I watched her gasp in pain and scream to get the bubbles out of her stomach.. I hooked up her tubing and her stomach expelled 40cc of blood. She watched the syringe fill as fast as I did - she suddenly wanted to be done and get away. She knew that when I saw so much blood, that I would worry.. mommy's worry often leads to a doctors visit. Annabelle is happier to be in pain and home than a doctors to 'help' the boo-boo's. Fortunately, the bleeding stopped after 10minutes and I unhooked her and promised not to tell the doctors. We laid in bed together and watched TV. We didn't cuddle... but we laid in bed together (small victories).

We started her medication Monday night before bed.  We finally got the thumbs up from Cincinnati that her EKG was Normal and we may begin her new pain medications.

Beyond just hooking Annabelle to feeds, this medication administration was the first time I've had to do something with Annabelle's medical care since being home. It truly wasn't a big deal at all - I just needed to cut and mix the meds, hook up her extension to the gtube in her stomach, allow her stomach to expel any air then administer the medication, watch it, flush it and unhook the tubing. This is a very fast, quick process that we've done a thousand times. Unfortunately - when Annabelle saw that I was cutting a pill and pulled out tubes and syringes - she decided in that moment "This will be a battle I am going to fight". Within seconds of her seeing what I was doing at the kitchen counter, she lost her mind and ran upstairs to hide behind her locked bedroom door.

I headed upstairs after I finished assembling everything I needed: Feeding tube extension, 5ml syringe, 60cc open top syringe to vent, 5ml syringe with medication and two 10ml syringes with water to flush... paper towel and a lollipop.

Annabelle was hysterical in her room begging me to go away. This process was painless and routine, but her anxiety decided she wasn't having it. She didn't trust anything I told her and yelled louder than I could speak. It was a 5 minute battle of trying not to escalate the situation but convincing her that I wouldn't hurt her. I pleaded that she allow me to TALK her thru the process and I would let her do 100% of everything herself - I promised I wouldn't touch. After calming down, we sat in her bedroom floor together, as Mady encouraged her "Good job sissy! You do that just like a real nurse! You are Nurse Annabelle -hehe-"

I didn't touch her at all. She did most everything perfect. She probably only got about 75% of her medication bc it was messy, but the value of no tears, building trust and her doing it herself was more valuable than her getting 100% of the medication.

The girls played doctor upstairs as I cleaned everything up. When I walked downstairs, AK had poured me a glass of wine and waited with a hug because he overheard the battle from upstairs.

We are taking it day by day. Sometimes hour by hour. I look back and don't know how we've made it this far but somehow we have. I look forward and can't breathe because I'm not strong enough but I know I have to be. It's overwhelming. The past, the present and the future. Every minute is hard sometimes and it will break you if you allow it. Right now, the road is quite rough in our home.. pray that it gets easier soon so that we can remember how to laugh and smile.

I have to say before I finish this post. Allan and I must give most credit during the past couple weeks to Madelynne. Annabelle is furious with AK and I, but she isn't mad at Madelynne at all. Her sister is safe and Mady has taken her under her wing without judgements. Madelynne knows her sissy had a really hard time in Cincinnati, she knows why Annabelle is mad at mommy and daddy but she doesn't blame us like Belle does. Mady has been SO patient with her sister.. 10x more patient that she typically is. She is our method of communication some days.

Annabelle is happy with her sissy and Mady is content to play upstairs alone with Belle to keep her happy.
When we needed to give pain meds, Mady was right there beside Belle and making her laugh as I stayed several feet away just telling them what to do.
When I told Belle not to ride her bike in the driveway and Belle had a screaming fit - Mady turned their time into a game of tag in the yard and played bubbles.

Madelynne takes on a lot of responsibility as the big sister to a chronically ill sibling. We have never asked or expected her to take on that responsibility, it's simply part of her nature and spirit. I love that most about Mady. I love that she finds ways to help anyone in need, I love that she shares my heart to see when others are hurting and figures out how to help and make them smile. I love learning from my strong 6yo.. I love that she gives us so many reasons to smile during the day when it's easier to just fall into a ball and cry. Mady brings out the sunshine and spirit in Belle and our entire family, even on our darkest days. What a blessing... despite the despair, we are blessed beyond measure.

Pictures from Cincinnati

Friday, July 10, 2015

I hope there is sun behind these clouds

Since being home from Ohio, life has been trying to get back into order ... but Annabelle is fighting every step.

She's mad. She is absolutely furious with AK and I for everything she went thru last week. She's bitter. She's angry with her sister. She's heartbroken and constantly on the verge of tears.

This used to be so much easier when she was a non-verbal baby. She cried during procedures but it didn't take long for her to forget about the pain and day and she would go back to loving us. The older she gets, the wiser she becomes. She still does not understand why we have to do the things we subject her to. She doesn't understand why we always tell her "The doctor wants to help your boo-boo's" but we never leave with the "OK" to go eat pizza and have fun like a normal child. I don't have the heart to tell her that she will never be normal or be able to do those things.

She's had a really tough week. She has fought daily with the nurse. She fights sleep at night. She throws her food on the floor while locking eyes with AK and I. She screams a fit the moment we ask her to do something. She's hitting and fighting everything. She is full of anger and I don't know how to help her channel it. Ive tried giving her one-on-one time but that only seems to be an opportunity for her to privately show us how bitter she is.

Today we're hosting a playdate with some new friends for Annabelle. I am going to try my hardest to stay out of her path and hope friends and kids her age will distract her out of this attitude and painful darkness she's in. She woke in a fairly good mood so here's to praying for a sunshine on the horizon!!

Monday, July 6, 2015

Our Results from Cincinnati Children's Hospital

Since the moment we found out Annabelle would come into our family, we fell head over heels. A few weeks into the pregnancy, doctors began to take a closer look at her, we worried but remained optimistic. We decorated her nursery and named her Annabelle, although we didn't have a middle name picked out yet. 7 weeks before she was to arrive, Annabelle demanded her birthday sooner. She came into this world strong as ever and fighting with all her might. I watched her thru the incubator glass as I sat in my wheelchair of that NICU - the baby girl that we prayed so hard for was here ... but she scared the hell out of me. From her red/blonde hair at the time, down to her tiny square feet, the warm fuzzy feeling a mom should have, felt nothing like nurturing. Instead it felt purely like fear. I watched her all night and made her a promise, "you keep fighting baby girl and I will fight for you.. You're the blessing in our family and while I don't quite understand you yet or why God has chosen me as your mommy - I just know you will bring us Grace in this storm."

Grace. Annabelle Grace Bishop was named that night and our promise has remained strong since.

We have traveled from Richmond to Norfolk, Baltimore to Boston and now Cincinnati OH to figure out the uniqueness about our Annabelle Grace. She has fought the hardest battle for over three years and we have stood next to her every minute - advocating on her behalf - fighting insurance companies daily - sleepless nights researching the Internet - reading medical textbooks that I can hardly decipher - praying and encouraging others to pray for us.. Each night we laugh, we snuggle, we usually cry but we are together as a family. Grateful for the day God has given us and praying for better news tomorrow. For over three years we've prayed for better news and we never seem to find it.

Cincinnati Children's Hospital has been the biggest blessing and asset to Annabelle's story thus far. In only 1 week, we have made bigger strides towards figuring out what is happening to her frail body than all the years of testing and past surgeries combined. 

We met Dr. Putnam Monday morning in our hospital room as Annabelle was being prepped for surgery. He casually walked into our room and watched Belle closely before introducing himself. 

"So what's been going on?"
"Well.. The story is long Dr. Putnam but ultimately were here for answers that we can't seem to find anywhere else."

He continued to watch closely.. "She has Eosinophilic Esophagitis, doesn't she?" 
" yes, but.."
"Mrs. Bishop - this child does not only have Eosinophilic Esophagitis.. But my question to you specifically is this, and don't take it the wrong way.
What do YOU want from ME?"

Wow that's a question. I've never had a doctor ask me what I want before. It's probably the question I've always dreamed about being asked, but when those words fell from his mouth - I found myself speechless and looked at AK for help.

"Dr. Putnam. I want you to save my daughter. I want a realistic answer for what is wrong with her and I want to leave this hospital with a responsible game plan that gives us some direction as to how to safely care for her, what our future looks like and also ... I want to make her as comfortable and as happy as she deserves to be. That's what I want from you."

His scenario blew me away. Here was his response:

Let's look at it like this - Hypothetically, Annabelle has a cold. A cold.
She has a runny nose, congestion, sore throat, headache and fever.
I could send you to an ENT, Pulmonolgist,  Neurologist and Encrocrinologist. Individually they will each help you address all the symptoms but in reality - she just has a cold. The fever doesn't give you a sore throat and the headache doesn't give you congestion. Treating them individually never helps rid your body of the cold virus. It's expensive and a narrow minded way to treat the actual problem.
Find a doctor that will pull their head out of the sand and recognize, it's just a cold! 

Now on a much higher, severe and dangerous scale, we have Annabelle.

She has eosinophils in all the wrong places in her body. She has seizures, body temperature instability, headaches, menstrual cycles, she fails to grow properly, she is delayed in a multitude of areas, her liver is failing and her body overall is succumbing to something. She does NOT just have Eosinophilic Esophagitis. You cannot save this child by treating each and every symptom without determining the primary and global problem.

..... I was speechless and fighting tears. "That is everything we want Dr. Putnam. That is why we are here."

Dr. Putnam: "Then that's what we're going to do. I cannot promise we will get the perfect answer. I cannot promise we will get you an answer before she's in college. I have less than 20 patients just like Annabelle and they're all a mystery to me and the medical world. Not all answers are out there. But I DO promise to fight as hard as I can for you and give her the best care, responsibly, individualized for Annabelle just as she deserves. You will go home with a game plan and she will go home and wear a smile this summer. That I can promise."

He left the room to get paperwork for us to sign. I broke down. I haven't let tears fall like that in so long but I couldn't hold them back. In that moment I didn't care what what we came home with or what a diagnosis would be. I was just so grateful and relieved to finally here logic and genuine, educated, concern for the same person as I care about so much in this world. To know we have another doctor (our pediatrician being the only other one) on our side, is more of a blessing than I could ever ask. I feel safe, I trust him with my baby.. Trust is something we have struggled with for years - I don't trust anyone with Annabelle. But I trust Dr. Putnam. He understands her. 

Thank you all for praying so hard for us and for God sending this doctor to our baby's room. Thank you Dr. Putnam for seeing what it is I have tried to explain to doctors for years. Thank you for believing in us and in Annabelle. 

When Dr. Putnam came back into the room, he explained what is likely the explanation for Annabelle. He believes she has a form of either Mitochondrial Disease or some other form of Inborn Error of Metabolism / Metabolic Disorder. The testing is approximately $7,000 and often not covered by insurance. It will involve extremely painful, invasive tests, muscle biopsies from her hip, live fresh tissue samples and an incredible amount of blood work. With all the testing, time, pain and money - there is still a chance that Annabelle will still have this type of disease but due to the thousands of DNA, tissue, mitochondria and cells that have to be tested, we may never actually get an answer that has a name. It's a gamble. If we roll the dice, there is also a chance that we DO get a name to what she has.

With a name will come understanding.

  • Floods of benefits like assistance from insurance. It's really hard to request supplies, tests and a wheelchair when you don't have a diagnosis beside your name. 
  • The ability to explain to people what is wrong with Belle, with a name and understanding of the disease is a blessing in itself. As a parent of an undiagnosed child, the judgements in the medical world and community are heartbreaking. Everyone questions what we're doing and why. Every doctor looks at me like I have three heads when I make certain decisions. Strangers read me a novel on suggestions for what worked for them and what pediatrician they love. 
  • While a name to her illness wouldn't solve everything, it would truly solve everything we want for her. 
  • To be able to explain to Annabelle when she asks questions about her body.
  • To explain to Madelynne what is happening to her sister. 
  • As parents, to know what a future may look like. 
  • To justify to insurance companies why we need xyz and to be able to shut up strangers in the Kroger checkout line.
It's a gamble. Do we roll the dice and put Annabelle thru more hell for the CHANCE to get a name, or do we learn to live with what we have? 

Dr. Putnam met us in pre-op before surgery began. He told us the plan and how long surgery should take. He also said, "no pressure on you both. But while she is under, is it alright if we take blood to use for Mitochondrial Disease testing if that is something you both choose to pursue? We can get a good amount of blood now and some of the testing can be performed after its frozen.. Now or years from now. Would you like me to do that for you while you both decide what you want to do?"

We agreed. They took a great deal of blood from Annabelle while she was under anesthesia. Surgery continued to run smooth. 

Before we were able to see Annabelle, I told you Dr. Putnam's nurse pulled us into a tiny consultation room. I panicked when she shut the door. I don't like small private rooms when my daughter is on an Operating Table. I want to be left alone until I see her again. End of story. 
We sat quietly and motionless as she gathered her paperwork and words. She confirmed who we were speaking about... Annabelle Grace Bishop - Birthdate: 9/20/11 - Address: ..... Check check check. 

Mr. and Mrs. Bishop, for starters, Annabelle is ok. She's still in the OR and they're just finishing up now. Dr. Putnam wanted to speak to you here before you go see her. 

He joined our tiny room, the size of a closet. 
"What is Annabelle's diet right now?"
I frowned because I knew he would be disappointed. Her diet is RECKLESS for a child with EoE. "She eats all fruits and veggies, she's also allowed chicken, coconut milk and rice. All foods are natural and organic. Always whole foods and mostly prepared at home with no cross contamination."

"Hmm... What medication is she taking currently?"
Again.. I knew where he was going. This was the first time he's ever performed a scope on Annabelle. Her GI system is always in terrible shape. She always has bleeding gastritis in her tummy, she's always had white plaques and furrows, esophageal rings closing her esophagus and scar tissue from all the prior damage. AK and I know this and expect it. We knew her scope would look awful, we planned for that news, there's no way it wouldn't look bad. She's only ever had ONE good endoscopy in her life, and that was bc she was flooded with drugs, hadn't eaten any food or drink in over 117 days and was tube fed. That was over two years ago and we've only been reckless in her EoE care ever since. Doctors in Richmond don't understand Annabelle's EoE enough to safely control it. That's why we're in Cincinnati.

He handed us printed pictures of her GI system that he took during the Endoscopy. I looked at all three pages... Then I looked at them again... "This isn't Annabelle, these aren't her slides"

"They are.
Mr. And Mrs. Bishop - Annabelle does not show any indication of Eosinophilic Esophagitis at all. She was clean. She did not have any signs of damage, she did not have irritation or bleeding of gastritis nor did I see signs of an inflamed lower GI."

"But how is that possible? How in the world is that possible?!"

In that small room, filled with his nurse stunned, the doctor in disbelief and AK and I completely in shock - we stood silent. Dr. Putnam told us that just because visually she looks well, does not mean the biopsy's will reflect the same. Nor does it mean she isn't suffering in other forms - but for now, we need to keep praying to whatever were praying and exhale. 

We were escorted out of the room where we fell into the nearest chairs of the waiting room. We couldn't talk. We could hardly mumble..... I don't understand.. I don't ... Understand.. How is this possible?........ I don't understand...

I looked at AK. "The power of prayer AK, I'm leaving it to that. With as many prayers have flooded the heavens with Annabelle's name, he sure has delivered this time. 
Power of prayer."

All that prayer and credit goes to you guys! 

We joined Annabelle in recovery where she spent the rest of the day disoriented, in pain and exhausted. We were able to leave later that evening to check into a hotel where we could get a shower and much needed undisturbed rest.

Dr. Putnam asked how long we would be able to stay to get answers, we told him "as long as it takes, no questions asked." He wanted us to see Genetics to gain another opinion on any sort of Metabolic Disorder / Mitochondrial Disease. He didn't know if we would be able to see the doctor during the week and asked us to stay until we could see him. When Dr. Burrows heard of Annabelle's history - he asked to see us right away. We got an appointment Tuesday afternoon at 3:00pm.  

Meeting Dr. Burrows and his team was exhausting, long and required digging into a history of our minds that seems like an eternity ago, when in reality was only within the last couple years. Each problem we've occurred, we needed to document the dates - which medication she was on, which diet she was undergoing, what the symptoms leading to the issues were etc. We met first with the geneticist intake coordinator and nurse, she asked our series of questions while we told our story. We mapped our family tree and finally it was time to see the doctor.

The conversation was long, but worth every minute of it. I was heartbroken but relieved to hear his expert opinion of Annabelle and how closely it compliments that of Dr. Putnam's. To have doctors in two very different fields, see the exact same rare issues with our daughter and not hesitate to communicate them, is nothing less than magical. (I know that sounds ridiculous, but those are words we've never heard before. Doctors never understand or agree on anything with Annabelle. It was like stars had aligned in Cincinnati Children's Hospital for us.)

He also believes Annabelle has either Mitochondrial Disease or an Inborn Error of Metabolism. He explained his position on this preliminary diagnosis for Annabelle and explained to us what seeking a diagnosis may involve. Dr. Burrows does not wish to pursue muscle biopsy testing. After we heard the second professional opinion of the same set of diseases in two days, AK and I decided we would pursue getting a diagnosis. Dr. Burrows requested additional labs, this time to be tested fresh and not frozen. We will work hard over the next several months to narrow in which cells and DNA need to be studied to hopefully determine where the defect is hiding.

He was very concerned with the amount of neurological damage Annabelle is demonstrating. He did not like to hear about her lack of pain management and requested that he sees us next time we are in Cincinnati - at that time we will also schedule to meet with the Neurology Team to evaluate potential damage. We're not sure yet what those tests will look like.

Before we left, I had a few final questions.

"We have another daughter at home.. what are the chances she also suffers from this. And, AK and I have always wished to have more children but are scared to death for something to be wrong with them too. We could never consciously subject whatever Annabelle has onto another life.. "

The doctor first time us both to exhale and breathe.
"This is a genetic disease, HOWEVER it likely did not come from either of you. There is a chance it could have, but most likely at the time of conception when both your DNA combined - during that time is when something went wrong for Annabelle. It likely did not begin with either of your DNA.. it likely happened while Annabelle was in the making. Did you have a hard pregnancy Ashley?"

I did. My body tried to miscarry for months. I was taking medication when I was pregnant and suffered from Hyperemesis Gravidarum the entire time. I now weigh approx. 140lb. I weighed 124lb the day I left the hospital after giving birth to Annabelle. I was terribly sick and she struggled the entire pregnancy. It was a miracle I carried her to 33wks, our doctors had very little hope she would make it that long.

We left the appointment feeling so refreshed. The flood of worry and guilt will never leave our minds, as a mother I will always feel guilty and live in fear that I have done something wrong to cause Annabelle this pain and suffering. My body failed her, my pregnancy didn't do her justice and didn't do what a woman's body is made to do. Every single day I live with guilt that I am not doing what I should for my suffering child. To hear a doctor tell us with clarity that there is a very very little chance that this is neither mine nor AKs 'fault' is a blessing to our mind and hearts. It's the biggest relief to know our other daughter may never succumb to what Annabelle is and it's comforting to place 'future children' back on our family wish list if we should choose to do so later down the road.

After the appointment we headed to the lab where more blood was drawn and Annabelle fought the most traumatic fight I've ever seen her fight. There is no need to go into detail what that afternoon involved, I don't even want to think about it a moment longer - it makes me nauseous to flash my memory back to that horrific room where my child was tortured and begged me for help as I held her down. Her veins are blown and are still swollen and bruised. Her hands and arm are still sensitive to the touch and its been almost a full week.

We met Dr. Putnam in the GI Office to review results and finalize our week. After talking about her extensive history and what we had been thru during the week and also what we've decided with Dr. Burrow's - it was time to hear the biopsy results.

They were normal.

Do you understand the healing power of prayer that absolutely had to occur to make this possible? AK was the first to giggle, he laughed and chuckled and grabbed my hand - I teared up and began studdering with him. Oh what a blessing it was to hear those results.

Dr. Putnam explained that just because these results were within normal range, does not mean the disease is gone - it's simply dormant at this time. Since we've never really given Annabelle the opportunity to show us a baseline of this disease, he wants to change absolutely nothing with her care. He asked us not to add any more food, but do not remove any food. Most importantly, do not go back on any of those god-awful drugs at all. This way we will be able to see a true reflection of what the disease does when untouched or modified. (Disease being only Eosinophilic Esophaghitis, nothing else).

And because the EoE is the very least of our focus while in the hospital, Dr. Putnam moved our conversation forward.

"Children with Mitochondrial Disease and Inborn Errors of Metabolism are chronically ill Mr. and Mrs. Bishop. Do you understand what that means for Annabelle? They are in chronic pain, they live each and every day fatigued and facing dangers to their body we never have to acknowledge. Each time she becomes sick, too fatigued, has a seizure, doesn't maintain her body temperature etc, she is damaging the mitochondria in her cells. Mitochondria are the power house of the cells and can never be repaired. The more damage you do - the faster she looses the battle to this disease. Everything within her GI system is sensitive to the touch, whether that's an air bubble, food, water etc - it's excruciating to her. I am going to assume she doesn't sleep or rest well? (bingo!) We need to control Annabelle's pain first and foremost before we do anything further. With better pain management, she will gain rest that her body critically needs to safely protect and preserve the mitochondria. With better pain management, her GI system will hopefully begin to function better because she can relax. If her GI system cannot recover with pain management, we will have to begin invasive Botox injections throughout her small and large intestines to encourage things to begin moving. The nerve and cells may never work to their fullest potential again, but protecting them immediately, now, needs to be our top priority. You understand?"

Dr. Putnam went into great detail what our future will look like for Annabelle with these diseases. He explained again that we may never get a confirmed DNA diagnosis, but for now she will be treated and cared for as a child with the disease. Often times, these diagnoses will come from an educated doctor that assesses the child and their symptoms and will deliver the diagnosis without blood confirmation, simply because it's too hard to find.

Our hearts broke as we listened to what these children endure - we looked at Annabelle, completely broken inside and wanting to scream "NO! NOT HER! PLEASEE!!!!" but we couldn't. We came to Cincinnati for the truth and answers, we aren't allowed to be picky on what we hear. Answers and a doctor that stands behind her is what we wanted and what we got. But it wasn't pretty.

Dr. Putnam is placing Annabelle on a heavy pain killer that she will take daily. It's also a sedative that will force her to sleep and gain continuous rest. Because of the drug, he ordered her to have an EKG to approve her to take it. We still have not gotten the results of the EKG so we cannot begin the medication quite yet, hopefully everything will come back soon.

I will post pictures of the week in Cincinnati, Our homecoming, Answers for Annabelle, Videos etc very soon.

For now, please know how much you have made an impact on Annabelle and what we were able to achieve while in Ohio. Without your love, support, donations and prayers, we would have never been able to secure the team that will now 100% care for her from this day forward. All our care and doctors have been moved to Cincinnati Children's Hospital. We will work with our pediatrician at home for when we need immediate assistance, but when we need help, consultations, surgeries, test, etc- we will be traveling to Ohio. Our trips will likely be every 4 months for surgery and evaluations.

Your prayers have been answered for Annabelle. We all wish for better news from our trip, but we got the news we needed. Answers for Annabelle is what we came home with - that is our prayer answered in itself. Thank you all, from the bottom of our full hearts - thank you thank you thank you!

Sunday, July 5, 2015

Update is coming..

Thank you all so much for your love and patience. we have taken some time as a family to get settled back home but I am very eager to update you on where we are and how things went. I will have an update posted tomorrow for everyone so please check back then! 

Thanks guys,

Wednesday, July 1, 2015

A day without appointments

She's Weak. Tired. Defeated and Heartbroken. She wants to go home and so do we.

Both her arms are covered in blown veins, both hands are bruised. The stoma around her gtube is forming granulation tissue before our eyes that will soon become infected. 

We're ready to go home :(

Annabelle was very uncomfortable last night as she tossed and turned in the bed with daddy. She doesn't want to snuggle us to me anymore, she's mad at me for bringing her here. The morning began with positive energy and smiles about visiting the zoo, but the moment we got into the car she shifted.. I don't know if her pains began to kick in or what happened but we spent the rest of the day on pins and needles trying to decide to go back to the hotel or push her into enjoyment of the zoo animals.

Annabelle never used to complain of pain, she never said she was hurting and rarely did acute pain stop her in her tracks.. doctors have said numerous times that this is likely because she has suffered pain her entire life and doesn't know the difference between pain and feeling normal. Lately however, she is complaining, a lot. Her pains are increasingly harder to manage - for her and for us. She is verbal with her pain levels and can begin to finally tell us where she hurts worse so we can address it specifically to those areas. Today unfortunately, she just said she hurts with tears in her eyes. She would gasp when the waves of pain hit her and remain motionless. AK and I would watch one another and Annabelle, not sure if we should keep walking or stop. She whimpered to herself but persistently asked to see the Lions.

Our hearts are breaking minute by minute as we watch our baby succumb to whatever disease plagues her small body. Our mommy and daddy minds race for ways to help our youngest daughter fight a battle that we know nothing about. She looks at us with eyes that protect her, but she looks past us because she's learned in her young 3 years that we never do actually protect her. How do you deliver that message as a parent? How do you whisper in their ear when they're crying  "It's OK sweety, mommy is here.. it's ok, I have you". That means absolutely nothing to Annabelle. Those words are not comforting, in fact, they're a message that far too often delivered painful results. Mommy and daddy holding her close, does not ease her pain nor does it ease her mind - we hold her thru her pains without helping them because we can't.. we hold her down while others subject her to pain - worst yet, we hold her down and subject her to pain OURSELVES! Our hearts have been breaking for years..... I think we have now broken her heart, not just ours. And the sound of that shatter hitting the floor is paralyzing :(

The Cincinnati Zoo was probably the best zoo we have ever been to. The monkeys were hysterical and SO loud this morning, Annabelle was able to comfortably sit in daddy's arms and watch them swinging.

We explored everything the zoo had to offer. We saw every exhibit, found the lions, pet the goats and measured a snake (GROSS!)

She complained of not feeling well and could hardly stand when being held by one of us. Bribery ensued so we found ourselves caving to the purchase of a slurpee, face painting and carousel ride (yes, that's where your donation went this week.. thank you lol)

We came back to the hotel to let Annabelle rest after a quick shower. She fell asleep right away.

 I think she needed the nap.. I couldn't rest, nor could AK. We faked it as long as we could before we both got up and started moving around.. Started a load of laundry and cleaning. I then found myself scrolling thru all the pictures of Madelynne. I miss my big girl so much it hurts. I've never been away from her this long, likewise, she's never been away from us like this either. She's staying with my grandmother, and while Mady doesn't say it out loud, my grandmother said she really misses and is worried about her little sister. 

Here's the letter she wrote to Annabelle this morning while coloring alone. 

I hope you had fun. I miss you Annabelle. I love you Annabelle. You are so nice to me. Thank you for my gift. I love you so so much. You are my favorite person in the whole world. I love you Annabelle. 
Love, Mady

I have Madys picture on the nightstand in the hotel room beside us and we talk about her all the time when we can't FaceTime. Annabelle keeps telling us all the things she wants to do when we bring Mady back to Cincinnati with us! I love that my girls adore one another, they're the best I've ever given them - each other.

Tomorrow is biopsy results day. We have been thru this nearly 15 times in two years and it still hasn't gotten easier. We won't sleep tonight. We likely won't be able to talk about all the what-ifs. We will just watch tv and pack. Toss and turn and hold each other's hand with heavy eyes as we count the hours until we hear the doctor speak the words. It never gets easier. It never hurts less. Good news or bad news, our child still fights this disease yesterday, today and tomorrow despite what pathology results say. The fight will never end and these night before we hear the results will never cease. 

We said a prayer tonight as a family though, we cheersed before dinner to accepting any news as another step forward for our family, no matter what it means on our path ahead. We toast d to the opportunity to be here in Cincinnati Ohio and for the skilled and knowledgable physicians that have cares for Annabelle so far. We are blessed to have the support at home for us while we're miles apart and we admire Annabelle's strength for fighting so hard to make it this far. 

Tomorrow will be hard. Tomorrow we will hear words we have never heard before and will be forced to accept a lifestyle change we've never embraced. Tomorrow, words will cut deep but they will be the truth we have searched for so long. 

Pray for us tomorrow. Our appointment is I the hospital at 915am.

Xo sweet dreams world. 
Sweet dreams to you my MadelynneMarie, we miss you baby girl. Sleep tight.