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 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.
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.
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!).
- 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
- 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.
- 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..
Ashley, I have been reading your blog and praying for all of you since the fall. I am very excited for you guys to have some answers. As a mommy, I can't imagine having a sick child and NO ONE knows what to do to help. It's heartbreaking. Praying for peace as your crazy week goes on. I am hopeful that I will be able to attend the event on Saturday and look you in the eye and give you a hug. God continues to keep you on my heart and often wakes me in the night to pray. Believing for answers......
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