Friday, April 24, 2015

Quite the crappy conversation. Literally.

Our GI called me back and within minutes of discussing Annabelle's situation, she asked that I bring her in immediately. I called our nurse to let her know the plans and sweet Annabelle, at 1030am was still in my bed. Our nurse had everything packed for us by the time I walked thru the door. Annabelle was laying down, with little color or energy, but happy and content to watch Netflix.I told her we were going to the doctors and she immediately pleaded not to go. She didn't want to get dressed and couldn't walk. I carried her to the car and we sang and talked all the way to the office.

She was pitiful in the backseat. Trying so hard not to fall asleep. Half way to the doctors, she began wretching/dry-heaving again. Driving on the interstate, there isn't anything I could do! I knew she wouldn't vomit, there wasn't anything on her stomach :( I was helpless. The wretching stopped quickly, but within 10min it began again. As quickly as I could, we made it to the doctors office where I scooped Annabelle's limp body from her carseat. She was utterly exhausted as I carried her inside.

Standing to get her weight, she stumbled, standing to measure her height, she nearly fell until I caught her - the nurse told me, "Mom, this is enough - carry her back to the room, I'm getting the doctor".

We quickly discussed Annabelle's most recent history with the bowel issues and she felt around her tummy. The doctor did a few procedures that were quite uncomfortable for Annabelle but necessary to determine if she were impacted and how badly, before we went for Xrays. Annabelle looked at me with the saddest eyes "You said it won't hurt today mommy. You a mean mommy!"

Xray took much longer than normal and I pleaded with Annabelle constantly, "Do you need to go potty sweety? It's right here." The answer was always the same. No mommy, no pee-pee or poop. I don't have to go.

She was brave for the xray. She was too lethargic to wiggle and move around.

We headed back to the doctors office and sat down to review the xray. The stool was clearly visible everywhere in her large and small intestines, but not in the bottom portion of her large intestine/colon where it needs to be in order for Annabelle to feel the urge to have a BM. This explains why the enemas have been unsuccessful. We needed to know where things were stopped in order to determine the best action plan to get things moving.

The action plan is discouraging, to say the least. The doctor is under the impression Annabelle is "holding" her stool bc she is scared it will hurt to have a BM. And logically speaking, this could absolutely be true that Annabelle is scared and may hold it. But from the images on the xray - Annabelle doesn't even have that option of holding it, the stool isn't nearly low enough for her to feel it!

The doctor gave us multiple suggestions from a potty training standpoint and I was visibly annoyed by what she was telling us. Our nurse and I work with Annabelle day in and day out - this has never been a problem before, and suddenly the child is going 10 DAYS NOW, without a BM. And she's agreeing that the stool isn't even low yet. How in the WORLD can that be a fault on my potty training or Annabelle to blame? How in the WORLD is this not a huge concern?

The concern was present and well communicated from the doctor. We need to see progress very soon from Annabelle, but just how to do that is difficult to determine - especially considering we are trying everything already.

She finalized the action plan. It involves 4 new prescriptions (here we go with the damn drugs again.. that makes, what? A million drugs my child takes now?). Those will each be administered in a strategic fashion. In addition to the drugs, I will continue to push lots of fluids and we will remove ALL foods and solids from her diet immediately.

All foods and solids? I stopped her immediately and disagreed, "no, im sorry, I cannot do that. the last time Annabelle went without food, it became life-threatening within hours. Because of her liver function, she must have a balanced protein intake and if we remove all foods AND tube feedings, she will quickly move into Metabolic Acidosis. We've seen her poor body do this numerous times in the past, and after a year - we've finally managed to avoid that critical state by managing her diet very carefully. If we stop feeding her, it will have soo many repercussions. The doctor talked louder, faster and over everything I was saying. She debated "Ok. feed her 1/4 her formula and 3/4 pedialyte". This isn't even a negotiation I was stable enough to have with a doctor. She should know better as to what I was saying. A mother knows their child best, how is it that doctors forget that so often? Annabelle is a mystery and ALL her doctors agree with that, so how do you not listen to her parent and nurse to determine the safest plan of care for this baby?

I left the office, discouraged, furious and absolutely terrified of what the next hours would hold for my daughter.

On the drive home, Annabelle continued to try to vomit, this persisted the entire hour drive home until she finally fell asleep / passed out from sheer exhaustion.  

As I got off the exit heading towards the pharmacy near our house, I got a call from CVS.

CVS: Hi, may I speak to the parent of Annabelle Bishop?
Me: Speaking.
CVS: You have 4 prescriptions that were just called in for Annabelle, is that correct?
Me: Yes mam, I will be there in about 5 minutes to pick them up, are they already finished?
CVS: Well actually, I've run both your primary and secondary insurance, but unfortunately 3 of the 4 prescriptions are not covered by either insurance. Do you still want all of them?
Me: Well that figures.. im sorry mam, this is just a difficult day. How much are they total?
CVS: The omeprazole is $223.. The cenna is $140........
Me: That's ok. I can't do this today. Is there anything OTC that I can give to replace the prescriptions that are not covered?
CVS: No mam, there is nothing OTC that you could substitute. Your best bet is to call your doctor and see if she has any suggestions. So do you not want these?
Me: Cancel the order. I appreciate the phone call, have a good day.

Annabelle was as weak as I was defeated by the time we both walked in the door. I hadn't eaten all day and knew I couldn't eat in front of Annabelle because she hadn't eaten since the day prior! I tucked her in snug to my bed with cartoons and then ate a handful of peanuts as fast as I could while hiding in the pantry in case she came downstairs. Tears started pouring off my chin before I could walk out of the pantry... why does this happen to my baby? This isn't fair at all! Here we are again - I can't feed my child and we are forced to sit back and just WAIT. Not feed her, knowing well that at any moment her body will begin to go into shock, knowing she is on the cusp of seizures all over again.. all because her GI system is being attacked by a god-awful disease that no one freaking understands!!! The frustration alone is enough to eat us alive.

I wiped my tears and went upstairs to wash my face and crawl in the bed beside my mini-hero. She was pitiful but so sweet.

"I love you baby girl. You're really strong, you know that?
-" I love you too mom. You strong too. We both strong... we have big muscles"
"That's right!!"

I text AK and told him that he needed to come home. We were headed downhill again and his kiddo needed her favorite person in the world.Annabelle is a daddy's girl top to bottom and I knew he would be able to make her smile. We both took a nap before it was time to go get Madelynne from school. After Mady was home, Annabelle perked up a bit. She played with her sissy and we all sat in the floor and played a card game of "War" that Mady taught us. I was so relieved to see Annabelle feeling better and with more energy... how she got that energy, I don't know, but she was smiling with her big sister, and that's all that matters.

The night wrapped up quickly. All unsuccessful attempts with our cocktail of meds to get her bowels to begin moving. Annabelle cried during dinner time because she was so hungry and we wouldn't allow her anything to eat. I crushed a pedialyte popsicle in a bowl and she ate it with a spoon. That was the best we could offer and I died inside. She was grateful for the popsicle, but persistently asked for chicken. Bless her heart.

She fell asleep quickly without a peep. She slept all night. AK was finally home, She had her daddy. I prayed for half an hour before falling asleep.. I prayed so hard her bowels would start moving during the night.
Nothing. :(

Thursday, April 23, 2015

9 Days is too long

We are at Day 9 without a BM.

Annabelle's esophagus is covered with excruciating eosinophils, her stomach is ridden of gastritis, her feeding tube site is leaking and bleeding but none of those issues are our primary concern. Annabelle's lower GI system is failing faster and faster and our worry is escalating at the same speed. 

She's taking all her daily medications, in addition to the meds for her bowels. Over the last three days, her nurse and I have aggressively attempted to get the stool moving without any luck.

In addition to mineral oil, Miralax, stool softners and lots of fluids, two days ago we have her 4 laxatives followed by more Miralax. Nothing all day.
Yesterday she had more laxatives, milk of magnesia and finally 3/4 of an adult Fleet enema. She passed the smallest amount of stool and the fluid from the enema.
Hours later, nothing. 

The only BM she had last night was the liquid from the enema, with a strong - ammonia/vinegar-almost, odor to it. When I say strong, I mean strong! And strong that smells nothing like stool. I'm a mom, poop is second nature to me by now, but this isn't right. Something is very wrong. 

When my mommy radar goes off, I dive in like a hawk and just watch.. Absorb and try to read this beautiful mystery of a child I have.. I kept her close & Annabelle slept in the bed with me last night.  She snuggles up so close, my heart could burst with love for this sweet girl. 

Annabelle tossed and turned a lot during the night, but no BM. At 3:40am I woke from a dead sleep to my angel wretching/dry-heaving beside me. There is no rebound as fast as my feet hitting the floor and darting for the medical supplies. I needed to allow her stomach to relieve the pressure before she tears her esophagus and stomach open from her nissen. Annabelle was calm, half asleep and trying to breathe between wretching. She pulled her Jammies up as I turned on the light, so I could hook her Tubey up. 

The moment the 60cc syringe was opened, I kid you not, the built-up pressure from her stomach exploded from the tubing so loud and fast, the gastric fluid hit my ceiling, CEILING! Then next the wall and bed. Annabelle immediately exhaled a sigh of relief. There wasn't much on her stomach beside a small amount of her feed and some fluids I had given at 2am. Her stomach contained mostly bile, but contained so much gas. The smell from her stomach relieving pressure thru the tubing was almost as vile as the BM! After Annabelle calmed down, I allowed her to have some small sips of juice and she quickly fell back asleep. I proceeded to clean the ceiling and walls at 4am.

4:05am she began wretching again. This process went on about every 15-20min until 5:30am.

Annabelle is exhausted from her long night. As am I - neither of us can wait for daddy to finally get home. He's been traveling out of town for three weeks now! We are beat.

I've left a message for the GI doctor here in Richmond. We are out of all our options at home with Annabelle. I am almost certain the wretching/vomiting during the night is a reflection from being so full and unable to pass any stool.

Please pray for my little girl. I will keep you updated.

Monday, April 13, 2015

"Why did Jesus make me sick?"

Were a Christian family. Madelynne has been raised in a private Christian school since 2yo. We read our children's bible before bed each night and talk about its stories. We need faith in our lives, we need to trust someone bigger than here on earth and I want my girls to love and follow Jesus and his message.

Annabelle: "why did Jesus put the boo-boo's inside me and make me sick?"

The words I have feared for so long. The question I can't answer - the question I want to know the answer to!! 

Annabelle is becoming so wise and curious about the world around her. The only blessing from being sick all her life, is that she has grown to learn this is her normal. She doesn't know anything different from the pain, hospitals, doctors appointments and segregation from others. But she is beginning to recognize that she is different. She wants to go to school like her sissy but she blames her tubey for not being able to go. The tubes limit Annabelle to a lot of things - anything that can injure or snag the tube, she cannot do. When she's being fed and wearing a backpack, her limitations aren't as bad as I feared they would be. But they are still present. 

The invisible disease though is the worst of all. The invisible fears, thoughts, isolation is ruining our families heart and minds. 

Mady went thru a spell where she would tell us Jesus would visit her at night when she was scared, and tell her that he was taking care of her sissy. Mady and Annabelle shared a room during the times she was critically ill, she told us Angels stayed in the room all the time for Annabelle and that they're really nice. 

We are a Christian family, and thank goodness our children have something to carry them thru this journey - but it's hard. 

Me: did you have a lot of fun in church this morning Annabelle? 
A: yes! Jesus takes care of us and loves us!
Me: that's right, he is always watching over you and loving you. 
A: mommy, why did Jesus put the boo-boo's in my tummy?
Me: I don't know why you have boo-boos sweety, Jesus did not put them there to make you sick. 
A: yes he did. Jesus made me. I don't think he loves me. He loves other boys and girls. 

She was bubbly and content to have this conversation while we waited for daddy and Mady. She has no idea the impact of those words and how close they are to our fears for her. Everyday we learn to navigate this life, some days we just have more questions than others. We drove home in silence.

The weekend was spent with two girls that weren't feeling well. We missed a bridal shower and baby shower because of the girls - but we found grace in the sunshine. We spent so much time outside this weekend. We danced in the grass. The girls colored our driveway in sidewalk chalk. They laughed and played hide-n-seek. We enjoyed afternoon naps with the windows open. I watched Annabelle from a distance and found myself in absolute awe of her courage. I watched Mady protecting her sister and keeping close tabs on her when they would walk up steps. The music was on and dinner was on the grill. Our girls were laughing. Between the tears and frustrations when Annabelle's pain would worsen, they were laughing and playing.

"When doubts filled my mind, your comfort gave me renewed hope and cheer." -Psalms 94.19

While we do not have the answers for everything we wish we did, and while we cannot help alleviate our families worry... we always find the light, the hope and comfort - for our family, that comes in the sound of laughter in the backyard.

Thursday, April 9, 2015

Holding our breath

Were holding our breath and just waiting.. We're praying that we can keep Annabellr stable and make her as comfortable as we can until we get her into our promise land.. Aka specialty hospital. 

I know this topic is becoming so tiresome, trust me, it is for us too.. Her bowels are in terrible shape. This past week she went 7 days without a BM even while taking floods of medications, milk of magnesia, chewable laxatives and fleet enemas. Nothing works. Tuesday night became a marathon of excruciating pain for Annabelle. I am shocked you couldn't hear her screams from your house as she finally started passing stool along with floods of blood from tearing so badly. The trauma lasted two hours and each time she passed even the tinest amount, the pain would take her breath away as fast as she jumped and screamed. She was so exhausted.. I was exhausted with her and didn't know what to do to help. She begged me for hours to help her, she pleases me to make it all stop and all I could do was watch her struggle. 

I've spoken with our doctor this week and her best guess is that we're looking at either Chron's or ulcerative colitis. We both prefer to have the specialist make these decisions when they perform her tests and biopsys there.. We just don't know how long it's going to take to get admitted :(

The seasonal allergies are kicking her butt. I am almost certain it's set off her eoe but there's no way to confirm that guess. She's coughing badly, choking on everything and tells me the booboo's in her tummy make the food get stuck. I don't know what that translates to for a 3yo but it sure makes us nervous.

Her energy levels are about the same. She tires quickly if she runs around.. She's powerless against the cold or fluctuating temperatures. Her appetite is also depleting dangerously- this is a direct reflection to the constipation. 

Monday, March 30, 2015

Drowning in paperwork

Paperwork, bills, schedules, meetings and more paperwork - it's never ending in our house for all Annabelle's needs. Spring is the time of year a lot of Annabelle's medical necessities expire and must be renewed. Beside all those items on our agenda, I am also scrambling to finalize the paperwork process to getting her help. 

Filling out paperwork should be simple, but for Annabelle it isn't. There are SO many questions that are difficult to answer.

Does the child have a seizure disorder?
-No. she does not have a diagnosed seizure disorder but she has an extensive history of seizures.

List allergies and the reactions to them.
-That's difficult. She's never had a real diet. She has a limited diet and we have no clue if it's affecting the disease but were *pretty sure* she isn't have an allergic reaction. A year ago, 100% of our tested foods came back positive for an allergy. This year, zero came back positive.

Give a brief history of your child's symptoms.
-Brief? Gracious! I could write a novel! Brief is impossible. What is most important to share? Our past concerns that may/may not be present today? = inability to maintain body temperature, constant seizures, zero growth, extreme lethargy, liver failure, monthly vaginal bleeding... i could go on
Or should I explain our concerns immediately? = Muscle weakness / fatigue, inability to control her disease, manifestation of bowel issues including impaction/constipation/building of stool that will not move without intervention, blood ammonia levels, etc.

Then we move onto the section where they began to ask, in a very discrete way, if my daughter is depressed... I remember answering these questions and bawling my eyes out almost two years ago when I realized how depressed my baby had become. At not even two years old, Annabelle was so clinically depressed she wouldn't speak, eat, communicate, crawl (couldn't walk) or cry. If she was frustrated she was scream and continuously beat her head into the ground. After months of therapy, she began to smile again. But as a parent, it's the hardest thing to realize your infant is so unhappy and you cannot do anything about it.

Two years later, the paperwork is still not easy, but we have come a long way.. the questions they ask, really sting. They're honest questions and a fair means of judgement for a child that is battling a life such as Annabelle's. But as her parents - this is hard. I cannot imagine how hard it is for a toddler. I am amazed at how well she carries herself at the ripe age of 3.5yo - I am in awe of her courage and strength when she has every right to be bitter with the world.

I want Annabelle in this hospital immediately, but we are at the mercy of so many hospitals and doctors to get there. We must have letters from anyone we've ever worked with. We need so, SO much documentation that is makes my heart crumble at the timeline it's taken. I pray we have everything together and we receive everything we need soon.. it's been nearly a month of this process and I want everything completed! I want so badly to hear those words "Annabelle is accepted and we want to see her". We need help and answers for her so badly, I just wish it were a faster process.

We are still waiting on:
  • Pathology slides from every endoscopy and colonoscopy she's ever had performed. Annabelle has had 5 endoscopies and 2 colonscopies between 3 different hospitals. Which means we have a whole lot of begging and pleading for medical records from multiple places.
  • ALL GI Records, including:
    • Personally written physician letter
    • All office notes
    • Reports and pathology from any/all other GI procedures - we have about 100
    • Anesthesia records 
  • Allergy records
    • Physician letters and notes
    • Skin testing
    • Patch testing
    • Lab records 
  •  All other records for procedures performed, we have:
    • Xrays
    • MRIs
    • Bone Age Scans
    • EEG's
    • Genetics
    • Nissen Fundoplication surgery
  • Primary Care Physician
    • Physician letters 
    • office notes
    • growth charts
    • blood work
    • etc
Obviously there is much more but fortunately I have FLOODS of paperwork on my own already, including all our in-home nursing care notes and documentation, I have a lot of personal notes written by doctors and specialists etc.

Until we have all this information back, from literally 16 different resources, we cannot move forward. I wish we could say we are patiently waiting.. but we're not.

Annabelle is beginning to show signs of losing energy and going downhill. She has spiked a rapid decline in almost 10months, but my heart and mind is constantly fearing it. She is definitely losing energy. She is becoming more and more verbal, telling me that something is wrong and she doesn't feel good. Her body is becoming weak to the point she cannot run and play for very long durations without collapsing into exhaustion. Her bowels are becoming harder to manage and her little body is showing signs of a major shift. If she goes hours without a feed (because she BEGS not to hook to her feeding pump), her color rapidly leaves her skin, she turns heavy yellow/orange and splotchy. She gets so very weak and can hardly keep her eyes open but she cries and begs for 'help mommy'. The threshold for stabilizing her body is getting difficult... not unmanageable but significantly more difficult than it has been, which gives us validation that we need to move faster than Annabelle deteriorates. Annabelle is so so strong, but I do not want to test her little body any more than she needs. We need to get to this darn hospital, or something has to give. Riding his roller coaster into the unknown does not sit well with our family. It's terrifying. Our prayers every night are open ended - we don't have clarification on anything beyond 'we made it today... let's try again tomorrow'. I need more than that. Annabelle needs so much more than that. We need to know how to keep our baby safe and thriving. The two of those are not possible for her at the same time. It should be.

Monday, March 23, 2015

Annabelle is getting weak.

She is tiring so quickly and having a harder time hiding her pain from us. She squints and gasps while holding her belly and then lies if you ask what is wrong. Her appetite is slowing and her spirits are dropping. Ive watched this evolution happen before, we haven't been here for almost a year but it's happening again. I have no idea what has initiated this decline but I pray we find help soon.

Last week I contacted our GI. We need help with her bowels asap. She prescribed a new cocktail for us to attempt to help Annabelle.
  • 2 x 4oz cup of Miralax mixed with warmed apple juice (1 dose in the morning and 1 after she's asleep)
  • 2 tablespoon mineral oil thru g-tube (1 dose in the morning and 1 after she's asleep)
  • 10mg Douculax 
  • Prunes
  • Lots of fluids
  • 1/2 sized Fleet enema 1x day until fully cleaned out
  • A&D ointment on her bottom to protect the tears and bleeding 
This cocktail does NOT include any of her daily medications or treatments. This is only to help her lower GI move stool.

Her tummy is miserable, and reasonably so. She's always crampy and terrified to have a BM which only makes matters worse.

Her energy is depleting. I took her to the store and she couldn't walk more than a few aisles without being carried. She cannot ride her bike one street away to the park and make it back home, which means she can no longer ride her bike during walks that are further than 3-4 houses..

Saturday night, while Annabelle was asleep, she rolled out the bed and fell on the floor. A usual occurrence for a toddler in anyone else's home. A terrifying moment for our house at midnight. I ran to her bedroom as she cried in disoriented pain.. When Annabelle rolled out of the bed, she was hooked to her feeding pump and tubing. She had rolled herself around the tubing and when she fell, the connection ripped from her stomach before the safety disconnected before fully ripping the tubing out. When I found Annabelle in the floor, I noticed the tubing was unhooked (which is something she typically does on her own when she isn't feeling ok) and I simply cut the pump off to give her a break for a while. I tucked her back into bed and we all went back to sleep. The next morning she laid in bed moaning in pain. I asked her repeatedly what was wrong and she wouldn't tell me. Finally she began to cry and asked me, "Mommy, will you look at my tubey? Something wrong." It was bleeding. The bleeding had slowed down from the 9hrs prior that the injury happened, but her poor tummy was a mess. Her nightgown was covered in blood and her stoma (hole) was torn. Mommy guilt flood my entire body. How did I not know last night that this happened? Annabelle BARELY cried, I thought she just scared herself and fell out of the bed. Oh my poor baby :(
Her tummy is much better but very sore. A sore gtube is not very helpful when dealing with a poor lower GI system.

We need help and guidance from skilled doctors that understand this disease. We are at the mercy of their expertise on what our next steps should be for Annabelle and the treatment of this disease and how its destroying her GI system. Our prayers are never-ending to get Annabelle to the hospital she needs to be. Right now shes tired, she's sore, she disheartened but she still smiles thru the pain. She is so strong.

Wednesday, March 18, 2015

You're so brave and quiet, I forget you're suffering

My small hero is growing so quickly. She's laughing, learning, dreaming and falling in love with life in ways I always prayed she would.. She sees life with a very critical perception but somehow finds all its beauty still..

The last several posts have given you an idea on how Annabelle is doing.. Things have not changed for the better, her appetite is improving but her body is not functioning any better. 

Her fevers have ended, that's a plus.

She continues to have a persistent cough that is sounding more an more terrifying like EoE and less like a cold. She's wheezing and her energy is cut in half. She can hardly run across the house with dropping into a hellacious coughing fit.

We are having so much fear over her bowel functions. 
Months ago, Annabelle began to regress from potty training and started having accidents in her panties. We were so frustrated but worked patiently with her.. The problem continued to manifest over the same time the Eosinophilic disease relapsed. She is now confined to the point that she is no longer having BMs on her own. I spent an hour in the pharmacy yesterday, with a hoodie over my head and tears on my face... reading every label and talking with the pharmacist to find the best relief for my baby girl. I wanted a liquid stool softener, though I learned that would not help Annabelle. I did purchase two pediatric enemas, (in addition to several prescriptions of course). My hope was that the enemas would be more comfortable for Annabelle. The next day our nurse administered two of them with very little results.

Her lower GI is failing terribly, and fast. I do not know if the Eosinophilic disease is attacking and damaging her lower GI or if we have a different problem all together. Annabelle has had issues since birth with her lower GI system, losing her bowels has been a conversation that has never been far from our doctors mouths to us.. just as hard as I fought and prayed against a feeding tube, I am fighting and praying against a colostomy bag. My poor child's body is ridden of  this disease and the medical interventions to help her. My poor baby needs help so badly before we lose the opportunity to slow the destruction down :( She is so happy and confident though. She is so brave and quiet, I forget she's suffering

Happy St. Patty's Day!
Annabelle was able to visit many of her little friends and play dress-up.. After a few short hours though, with a shuddering breath, Annabelle came to my side pleading to go home. Before I could say a word, she began to say bye-bye to everyone in her path. She was playing and feeling fine as far as I could tell, until I hooked her to her feeding. Her feedings make her nauseated.. she often cries to tell me "Mommy, I HATE my tubey, I HATE boo-boo's" We do not use the word 'hate', in our house, but there is no amount of parenting inside me that will correct her from that statement..... because, I hate her tubey and boo-boo's too.

I took Annabelle home and she was very weak. She couldn't walk by the time I made it thru the door. She laid on the couch for a short time before she began to plead for me to snuggle her so she would feel better. I feel helpless during these times, but I provide my daughter the comfort of my presence, if only that comfort is a finger or hand to hold onto as the pain and sadness passes. She watched a movie and I gave her a warm bath. Annabelle fell asleep without a fuss. She was visibly saddened and I was secretly breaking for my daughter.

Paperwork is almost finished for Annabelle's biggest trip ever. We are praying with everything we have that she is accepted into the hospital and research center. This hospital will save her life and provide our family with the answers, hope, treatment and help we have needed for so long. The paperwork is a timely, exhausting process.. it takes weeks/months to complete and I am nearing the end. As things begin to wrap up, our fear begins set, "What if she gets accepted? What if Annabelle's dream comes true and she is blessed with the opportunity to find all the answers she needs? What if we finally get the chance to go to this hospital? .. .. .. Can do we do it?"

During Annabelle's one and only benefit last fall, I met an incredible man. It was late in the evening and he reached out to me to speak privately. His first words he spoke stung me like a wasp "I know. . I know what it feels like. I know what you're going thru and I am so sorry.. I know how badly you would have never wanted or ever believed this would happen to you. I have watched you mother your girls all evening with a smile but I see your pain when others aren't looking.. I know, I've been there too." I was speechless, but he was not. He shared every word and fear that my mind couldn't pronounce. I agreed with the worries, we both met with the opinion on how much we HATE this for our children and how horrible of a situation it is that we would never wish on our worst enemy. He did know. He knew exactly what it was like, the fear, worry, hate, bitterness, loneliness and most of all.. the feeling that helping your child is out of your reach and so unfair. He knew. His child was plagued with a brain tumor and endured more pain and scary months/years than I could imagine.. he disagreed, as parents, we both have done the same. Our stories are different but the emotion is the same. The love parents have for their children is endless and painful. The generosity and compassion of perfect strangers was the blessing that saved his childs life.. a few weeks ago he reached out and asked to do the same for Annabelle. Medical bills are collapsing our families walls and a promising opportunity for Annabelle is in the near future. I cannot wait to submit our application and begin this next journey, but we cannot do it alone. Please share Annabelle's story. Please share the website Justin and his family have started for Annabelle. But above all, please continue to pray for this amazing little girl.