Thursday, November 20, 2014

They want me to feed my baby



We’ve gotten our report from the hospital when we traveled. Both the labwork and the written report reflected what the doctors stressed while we were there; Annabelle is extremely malnourished and her body’s internal organs are suffering the consequences. Immediately, we need to figure out how to nourish her, but as anyone that has followed Belle’s story, this isn’t nearly as easy as just a trip to the grocery store… Let’s discuss the painful position of being between a rock and a hard place.


At the end of the day, the words that continue to ring in my mind from the doctors were these, “If your primary focus is finding a diagnosis, and we continue this treatment plan and keeping her malnourished; by the time we finally reach a diagnosis, we will have a ‘vegetable’ on our hands with a destroyed body we can no longer repair.” I never understood the severity of severe malnourishment until Annabelle. I never knew the multiple systems and invisible damage it does to the body. I never respected how dire it is for a toddler to be nourished as their brain and body is rapidly growing. All these things are easy when you have a ‘healthy’ child. You feed them! Sure, sometimes they eat chips for dinner, but they’re fed and their bodies have something to break down and use. We wish to believe that the healthcare system is steering our children in the safest directions when they tell us to stop food and put this Medical Food liquid thru a feeding tube – we would like to assume they know what they’re doing and this is safe for our children. Follow doctors orders, right? Hell no. Ive fought for years that something didn’t feel right with Annabelle and her pathetic ‘diet’, I’ve fought for the last year that this isn’t nearly adequate and my voice falls absent on those that have the knowledge and ability to make changes.

Yesterday I spoke with our doctor again, the doctor I trust the most and has been the biggest advocate for Annabelle. She reviewed the physician notes and labwork and told me, “Ashley, go feed that baby.” I was speechless. When I saw speechless, I honestly mean I was lost for words all the while I had 39236354 questions and back-peddling from what she just said. I looked down at Annabelle who was mesmerized by the choo-choo train, sitting in daddy’s arms as we all stood in Home Depot. I couldn’t breathe. I told our doctor that I was so nervous to feed her. Im not scared of food, or her choking, and I am only slightly intimidated by the guaranteed EoE relapse, but more than anything – I’ve never fed Annabelle! It’s been since she was an infant was the last time she actually ate an array of foods! She won’t know what to do with herself. 

And then the fear really sank in.. Oh God, what will happen if she relapses too hard to control and we have to remove ALL foods from her diet. We will have to put her AND us in a mental hospital. I don’t know how I will be able to do that again. It’s taken us so long to work to our lifestyle where Annabelle doesn’t ask or expect the same foods as anyone else. I am about to ruin all that hard work and tears shed. She’s too young to understand what were doing. Good gracious I am terrified.


This was late that evening at dinner. Mady loves to open and eat peanuts. Annabelle just watches with no questions asked. 


So. We are going to feed her. I don’t know which foods we will begin, but I will decide sometime over the weekend. If you were to ask Annabelle, she would request a chicken nugget ;)




Monday, November 17, 2014

Premature Awareness Day


When you find out you're expecting, your mind floods and heart races. You feel like you could burst from all the love you feel inside. The emotion and joy is indescribable.

When you lay on an operating room table, awaiting to hear the fate of the premature baby being torn into this cruel, cold world, far too early; your mind races and heart shatters. The fear and pain is indescribable.


Today is prematurity awareness day. I never would have imagined this would be a day my family would celebrate, but it is. It's a day that we look back at those first terrifying hours and days living in the Neonatal Intensive Care Unit and learning how to care and fight for our daughter. For me, it's a day I reflect and wish to thank all the nurses and staff that loved and cheered Annabelle on and hugged us as we finally left the hospital with our daughter.


Someone told me while we were in the hospital, "these days will fly by and you'll forget all about it." They were right that they flew by, but I haven't nor will I ever forget the impact those days had on us.
I'll never forget the moment I met Annabelle and she was hooked to so many tubes and monitors that I didn't know how to touch my own child.

I'll never forget the sinking feeling in my gut as the first time I saw her and felt as though my body had failed my child. 

I'll never ever forget the cries I heard come from her tiny voice as they repeatedly stuck her every limb for another IV.



I'll never forget the lonely, empty hospital room.. because after all, people don't visit you when there isn't a baby to see. 

I'll never forget the ride in a wheelchair past the nursery to the elevators as I was leaving and the waiting room was crowded of happy families... And I had empty arms.
I'll never forget the emptiness I felt when I left without my daughter. 


I'll never forget the quiet house, long shower and alarm clock breast pump sessions as my child slept 35miles away from me, alone. 

I will never ever forget the day I brought my daughter home to complete our family. The fear, ohh the absolute terrifying fear of a preemie is nothing like the excitement of a newborn! It's pure fear!

Every single milestone is adjusted and weight charts are meticulously measured. More than anything though, are the nurses in the NICU that are sent directly from heaven above for premature babies. They are a work and practice all on their own for the miracles they do for the smallest of little people. I have no idea how it's possible to find such incredible and loving people in each and every NICU setting, but somehow it seems as though hospitals do it. Ours was no different, Johnston Willis hospital NICU was our home away from home and daughters first set of guardian angels. 



Today is premature awareness day and my Annabelle Grace is one of the strongest fighting preemies I know... I made her myself ;) 








Eyes, Tubey & Medications, oh my




Optometrist

Annabelle’s eye sight looks good, as does her overall eye health which is a huge relief. The appointment lasted a few hours and both girls had their eyes dilated, which was difficult for them both and us as we continuously calmed down their panic because their vision was blurred. Madelynne was upset that she couldn’t color within the lines and Annabelle fell out of her chair and onto the floor twice. We prayed the time would pass quickly and we could leave, before we knew it we were called back to see the doctor. She noted some slow/lazy blood flow within Annabelle’s eyes but nothing that should cause us concern right now. She does have some signs of being farsighted but at this point, we are just going to monitor it unless something changes.  We will continue visiting yearly due to her diagnosis, nutrition and mostly the seizures and neurological components that are associated with her general health. But for now, we are very pleased! 









I love how the doctor was asking her, "What shape is on the screen?" and if Belle didn't know, she would respond by whispering, "something".  funny kid!





Surgeon / G-Tube Check-up

Our appointment was shuffled multiple times, something was going on at the hospital and we kept getting bumped from our appointment time. We arrived  15 minutes early and by the time we were seated in waiting, we were told the doctor was running about an hour and a half late seeing patients. At this point I looked to my left and counted all my blessings that we had our nurse with us. My nerves were fried from the anticipation of this appointment.

I told Annabelle on the way to the hospital, “Sweetheart, we are going to the doctors today.” She asked why, “The doctor is really nice and going to look at your tubey..” this is about the time she started to panic and negotiate with me that her tubey is fine and no one needs to see it. I didn’t want the surprise to come when we got in the hospital room. I don’t like ‘surprising’ Annabelle anymore.. I don’t think it’s fair or helpful to her nor myself. Then again, I’m not a child psychologist either. But I am a mom, and I do know my child like she’s the second part of myself. I have been the only person beside her for each and every single procedure she’s ever endured. And I have come to the realization; Annabelle is smart. She’s wise beyond her years about the medical world. She is beginning to understand far more than I thought possible about her body and disease. She has owned her g-tube. I promise to stay honest with Annabelle when she asks even the most difficult questions, even if it means my heart crumbles to say the words, I will not lie. The conversation though, is still difficult. For both of us it’s hard. I HATE telling her what is about to happen just as much as I hate seeing it happen or her hearing it’s going to happen. But the amount of questions and understanding she takes from our conversation is priceless to the journey Annabelle is on. She knows that no matter the amount of pleading and begging, that I do not have the ability to say no to a planned appointment or procedure, so she doesn’t test me or expect that from me (thank God).



I asked her if she remembers the last time we changed her tube, and she did. She reminded me that mommy hurt her tubey and it got stuck. I told her the doctor today will change her button out and we will get a new one. She can carry our new box and button to the doctors office and give it to the doctor if she would like. I explained that the doctor needs to see her belly and check to make sure everything looks adorable. She asked multiple questions like, “Is she going to hurt me?” I told her, “I don’t know. It may hurt, or it may not hurt at all. But it isn’t scary, I will tell you everything she is doing, ok”. She wanted to know if she was going to get another glow in the dark tubey, and I promised, “Yes mam! You sure are! and then you can show sissy what it looks like in the dark!”

My mom met us outside the hospital when we arrived and walked with us to the appointment. The nurse and I waited with Annabelle and talked about Christmas and all things festive until they called us back.


Annabelle was nervous, clearly, but she was happy to see our doctor. She talked about her Tubey buddy, Ryan and told the doctor what she wanted for Christmas. The doctor and I talked for a long time about the persistent coughing and choking going on – we considered many plausible explanations and she directed me to a clinic in Richmond that is now seeing EoE patients, maybe they can provide some insight to whats going on as well.



Finally it was time to change the tube. It went great. The doctor actually applied numbing cream to her gtube area and we spun the tube a bit to numb the stoma well before removing her tube. Of course Annabelle cried and fought us all holding her down, but I don’t believe it was nearly as painful or traumatizing it could have been. As soon as it was all over, Annabelle sat up and was fine. She was proud of her new button and told us all that it didn’t hurt (despite the shaky breathing and hiccups from crying). We will be ordering a new size though, Annabelle’s tummy has thinned out and isn’t as thick (chunky) as she used to be, therefore her tube is too loose unfortunately. Hopefully that will be shipped soon.

I didn’t leave the hospital until nearly dark and Annabelle fell asleep immediately upon getting in the car. She was exhausted from the day. That evening was beautiful in Richmond and we decided to all have dinner on the patio as a family for (likely) the last meal outside of the winter before the cold comes in. The girls love eating outside and we all love spending as much time outdoors as we can.





While the beginning of the week started off well, the ending of the week began heading downhill for Annabelle. The coughing and choking is getting progressively worse. AK and I are not sleeping much at all anymore because Annabelle cannot rest if laying down. At this point, she cannot even take a tube feeding without choking.. a SLOW feeding at that. I was done by Friday and finally called our pediatrician and pleaded for help over the phone. I didn’t know what else to do because we’re not getting the help or direction that we need from any of our other specialists. After she did some research, she learned that one of the MANY side effects of prolonged use of steroids, is acid-mucus induced reflux. I begged to come off the prednisone but don’t have a clue how to begin to do so. We came up with a great game plan and began transitioning Annabelle off swallowed steroids and onto inhaled steroids Saturday.
 
She is taking Albuterol and Pulmicort, inhaled via nebulizer around the clock now. 
She doesn't like the nebulizer at all, and considering she is using it at least every 4 hours ..... mind you, medications multiple times x day, G-tube feeding tethered to her IV pole / pump every 3 hours for 1hr duration, and now breathing treatments.. she is NOT interested! :(

Saturday night, she slept for hours for the first time in months without coughing. I was so happy for her (and us too!). The coughing is still moderately present but getting better. Her appetite isn’t picking up much and she has been extremely tired and exhausted, but fights sleep. (The evilness of steroid use). Our fingers are crossed this treatment plan will help address these acute issues and Annabelle can begin getting adequate rest soon.



Upcoming
We see the GI doctor and a Dietician soon to discuss introducing a food into her diet and setup a plan for scoping (endoscopies / biopsy's) after every 2 foods. We are also working fast and furious into getting Belle to a Rare Disease Clinic… everything is a Hurry Up and Wait game, but we are trying to be patient.  



Sunday, November 9, 2014

She's so strong



I want to say this and simultaneously knock on wood. Annabelle is doing very well right now despite the weather changing and everything she’s been exposed to lately. I am so proud of her immune system for toughing it out for two flights, a hospital, hotel etc. I knew for certain we were playing with fire by taking that chance but she did awesome! A few days after we returned, Madelynne unfortunately got sick and caught a tummy bug. Panic set in again as I recollected everything they both touched, possibly shared a sippy cup, etc.. while we kept the girls pretty isolated from one another, again, Annabelle did terrific and never came down with the bug! I cannot believe, I honestly am just blown away at how strong my baby girl is getting. Every winter sets fear, every illness could mean a trip into the hospital, every fever could result in a seizure, every time she falls asleep, I panic if she’ll waken as the same Annabelle. She is giving us so much hope right now. I could never ask for her to respond and fight as hard as her little body is but she’s doing it, she’s doing it with flying colors and a roaring attitude!



Speaking of roaring attitude. Whoever quoted the phrase, “Terrible Two’s” obviously forgot to mention the 3’s. Madelynne was always very well behaved, introverted, soft and kind. Then our Annabelle came along: fierce, ferocious, loud, honorary, defiant, incredibly loving, head-strong, stubborn, did I mention she’s always really loving and sweet? Annabelle is the full package. Every single ounce of emotion and opinion and attitude, all bottled into a strong 3yo that has every reason in the world to keep fighting. I always say, “if this hell were to happen to one of my children, I am sadly grateful it’s Annabelle because she has the most appropriate attitude for it.” She fights with everything she has, night and day. Whether it’s Annabelle fighting her own immune system or Annabelle fighting with her sister over a toy that doesn’t even belong to her, Annabelle knows how to voice her opinion and stand alone in this big, big world!


Our appointments are coming up very soon. This week will be extremely busy for our family but hopefully enlightening for things we need to discuss and address. Tomorrow Annabelle will see an Ophthalmologist to take a look at her vision and eye health. We need to gauge whether or not these fevers, drugs, seizures, malnourishment etc have done damage to her eye and vision. I pray she handles the appointment well. And I cross my fingers and toes we don’t need glasses! 


Friday, November 7, 2014

Nights are long.

When we got home from traveling, I immediately touched base with our doctors here to begin making changes with Annabelle's diet and care. The top priority is her night coughing and choking. I truly didn't recognize the severity until sharing a room with her. I didn't notice how persistent the cough was, which has to be affecting her rest - which is so vital for kiddos. 

The GI would like for us to wean down her night feeds so that her stomach isn't as full while she sleeps, hopefully to reduce the amount of reflux.
Personally, I'm terrified and disagree with this theory for multiple reasons. For one, Annabelle cannot more than a handful of hours without Elecare without losing consciousness and lethargic. Two, I don't believe she has much on her stomach. Her feed rare is set to 40ml/hr .. Which is barely over 1oz of formula dripping over the course of an hour. The goal was to feed her at the rate of which her stomach empties and I think we're there.. She doesn't have excess fluid on her tummy to make her choke the way she is... But u could be completely wrong! 

Before we make this transition though, I've requested to meet with both the GI and nutritionist to decide a better diet and scope plan before we start weaning off night feeds. 


The second concern I addressed was in regards to Annabelle's BMs. The poor girl is barely able to poop every 5-7days. We try not to go more than 5 days without the need of an enema to make things move. It's traumatizing to watch a baby go thru these things. I wish a doctor would help her beside ordering more meds - hopefully we can add fiber to her diet in a few weeks and that will help. 

In the meantime, we've had quite the crappy enema experiences. And I mean every word of that sentence. Including the parts where I am showering Annabelle while she cries in pain and ak is scrubbing you-know-what out of our bedroom carpet. Oh so gross :/

Once everything was finally "cleaned out" and Belle felt better, we began our new delicious med. Mineral Oil. We were told to start with 1 tablespoon x day. That resulted in another night that resembled our enema festivities. Our amazing nurse has deligently worked this week to find just the right balance for Annabelles poor tummy. 

1/2 tablespoon mineral oil + 1 drop food coloring of Belles choice + 1 packet of Splenda. Voila = medication a toddler will take. 
Gross. 

Upcoming appointments:

Optometrist 
We have an appointment for next Tuesday. I have a feeling a doctor messing with her eyes isn't going to go over very well, but we'll see.

Pediatric Surgeon
Wednesday we have an appointment to see the surgeon that placed her Gtube and nissen. I want to talk with him re: the integrity of her Nissen and if he feels as though that could be the root of this nighttime coughing. The main reason for this appointment is to have the nurse at the surgeons office change Annabelle's button. Of the last two times I have changed her button, both have been traumatic and entirely too difficult. I may be doing something wrong, or something may not be quite right with Annabelle's stoma. Therefore I'll have the nurse and Annabelle's full time nurse do the button change this time and we'll see what they say :)

The following week is when we will see our GI and begin to make plans with her diet. Let the co-pays begin!




Monday, November 3, 2014

No diagnosis, but big answers



First, I want to apologize for the delay in updating on our trip. Life hasn't slowed down for a second since returning home! Secondly, i'll cut straight to the point: we're not getting our diagnosis from this trip. Heart-wrenching, but there is still a light and blessing that came from our visit.


Monday was fast paced and absolutely insane. By the time Annabelle and I made it to our hotel room, we had just enough energy left to both take a shower together and unpack our bag for jammies and crawl into bed. The night went a lot easier than expected, I made her a cup and she watched TV until she fell asleep. I did not sleep in the bed with her and it worked out great for both of us. (Our girls don't sleep with us and trying to do so when we travel is always a nightmare!)



2am
This kid is barking her little head off. 
I knew her coughing was bad at night, but I didn't have a clue it was this bad! She's choking and coughing so badly it broke my heart. She constantly rolled around and moaned. The coughing wouldn't stop. She would smack her chest profusely in frustration... I cut off her feeding pump and hoped that would have helped. After 45min it wasn't getting any better, just worse! I finally woke her up and made her have some bites of a snack and a little water. She was so disoriented but ate plenty. Laid back down and REALLY started choking! Within 30min however, she was better and peacefully resting again. I turned her feeding pump back on around 530am and she slept until 630!

I spent the morning looking out our window at the traffic, watching my strong little fighter sleeping and filling out hospital paperwork. (why in the world do I procrastinate these things?!) She finally woke up and waddled her way to my lap where we talked for quite a while about the morning and what to expect. As she watched tv, I watched the clock. As she played her games, I finished packing all our things: 3 medical binders, charger for multiple electronic distraction devices, snack and diapers, things to show the doctors, list of questions, notepad and paper... etc. With just a few minutes left, I knew I needed to exhale before I started to vomit. My cousin made a quick trip to our house the night before we left, he gave me a special gift that he wanted me to take with me... a mother's prayer book.. I picked up the book and turned to the pages that he specifically marked for me to read. I cried like a baby. I can do this! I know I can. I looked at Annabelle sitting peacefully across the room, completely oblivious to the magnitude of how important this day is to her life, I looked down at my trembling hands and then my chin pointed straight up to the sky,

"Thank you Lord for giving this little girl to me. I promise to continue this fight for Annabelle today, I can do this. Lord be with Annabelle and let's all get through this together, please, please hold my hand today, help me ask all the right questions, open my mind and listen to their words, do not fear with my heart but lead the specialists with that gut instinct I've always had for this little girl. Remind me to breathe, exhale, remind me to acknowledge Annabelle in the room even when she's being quiet and help me carry the patience and strength this day is going to demand. Thank you so very much for always being here for our family and sending all the angels our way for the prayers and love. Thank you. Amen."


Annabelle was adorable as ever with her new outfit and bouncing curls. We loaded the stroller and headed downstairs. She was asking a lot of questions and I could feel her nerves building.. I picked her up out of the stroller and she clung her arms around my neck as tight as she could. "Sweetheart, I know you're scared. But we are going to the doctors today, and I know he will help us, ok. Mommy will not leave you, I promise. It will all be over soon and we will come back to our room, alright?" 
It's amazing how much a 3yo can understand when you speak to them honest and truthfully. She understood every word and we walked around the lobby until the shuttle was ready for us. 


The shuttle ride wasn't far at all, Annabelle played some games and watched out the windows as we moved thru the town with a few other families on the shuttle. I pulled out the prayer book again and decided to flip thru some pages to pass the time. I found one verse that seemed to stick with me for the duration of the trip. I bookmarked it and read it probably 50 times over the next couple days, 

Lord, give me hope.
Give me patience to cope
and a reason to keep on trying.
Take my trembling hand
Give me power to stand
and a faith that is strong and undying.

I don't know what it is about those words but they are just what I needed to hear and believe as the day progressed.


We finally arrived in the hospital and began to make our way to Immunology. That is where we spent our next 6 hours of the day, in that one small room learning, talking, begging and exploring ideas with some of the best doctors we've ever had the blessing to meet. 

Here is the run down on what we learned. 

  • The doctor and team do not believe Annabelle has an 'auto-immune' disease. 
She did not meet multiple indicators that would make them believe it's auto-immune. Annabelle is presenting a much different array of symptoms that do not align....
  • They believe our diagnosis will reside either in the area of Metabolics or Rare Disease. 
We consulted with a Rheumotologist while in the hospital and she too did not support an auto-immune red flag, but she did order multiple tests that will hopefully either lead or dismiss a diagnosis for Lupus.
  • Annabelle is extremely malnourished. 
I was being 'smart', as I typically am, and asked the doctor, "Food? Diet? Doesn't she look healthy to you?" My frustration with Annabelle's diet is pouring out of every nerve in my body. I absolutely despise the fact that she's on such heavy drugs, steriods and has zero diet. I swear with everything that Elecare Jr (her medical food that she's been on since birth basically) is going to kill her. I really mean that.

The doctor responded very harsh, "No! She doesn't look healthy at all to me, she looks extremely sick and lethargic!" I told him, "Well, she weighs 32lbs.." He laughed quickly and said, "Well Mrs Bishop, she is fed nearly around the clock and takes prednisone twice a day. She BETTER weigh 32lb. But that doesn't mean she is nourished, and this child is NOT." 

He explained in a very tactful way that Annabelle is a typical patient suffering from Eosinophilic Esophaghitis that is being care for by a medical team that doesn't quite understand EoE. I did not request an Immunologist that specializes in EoE but it just so happened that we were scheduled with one of the top doctors that focus in Annabelle's leading disease. What a blessing in disguise, what a blessing for the perfect combination of doctor for Annabelle! 

He explained, Annabelle's diet is about the size of a pen tip. Her diet should be the size of a basketball. Her nutrition is based on the exact same feed, of the exact same measurement, of the exact same quantity, every single day, every day of the week and every week of the year. What happens when a toddler hits a growth spurt? They eat you out of house and home and you wonder how in the WORLD that small child just ate so much food! When Annabelle hits a growth spurt what does she do? She is fed the exact same feed, of the exact same measurement, of the exact same quantity, every single day, every day of the week and every week of the year. At the age of 3yo, her little body and brain are constantly growing and demanding so much to thrive. Her diet isn't allowing her to do so safely. 

When Annabelle hits a growth spurt, or demands just an ounce more than what she's getting from her diet, her little body turns on itself and starts breaking itself down. This is when we see the outward result of: lethargy, fevers, seizures, little balance, no energy, sleeping constantly, or at times, the exact opposite - extremely hyper and unresponsive. Annabelle's body is breaking itself down constantly trying to survive. We feed her nearly around the clock, 24/7, but in reality, she is so badly malnourished, we are killing her. 

I looked out the window at the cars driving 9 stories below our hospital room and my gut sank. I swallowed hard past the guilt and pain the doctors words had just caused and reminded myself again why we were here. I stood up to Annabelle's bedside and with a new game face - "Ok then. What do we need to do immediately? How do we fix this problem and what is a responsible game plan for starting Annabelle on food, because I do not have the GI support in Richmond to do this on my own. I will need guidance because there is a great chance I will be conducting this new treatment plan when I get back.


He assessed Annabelle. Her skin tone was several different colors, tones and textures, her pupils dilate extremely slowly, she has bags beneath her eyes and her eyes are sunken in, she hasn't had a BM in days and her mouth is dry. 

Her diet consists of very few fruits and veggies right now. We decided to conduct a new allergy test and determine which foods she still has an allergy to and which foods are safe to introduce from an allergy perspective only. 



Annabelle was not happy at all about the allergy testing. She screamed like I had never heard her scream before. She's been so good lately about lab work and tests, I couldn't believe she was this traumatized about an allergy skin test. It was bad, she cried, fought, screamed and begged with everything she had to not endure the test - but it was so essential. Before we knew it, we were finished. She turned around to the allergy tech and demanded an answer, "WHY YOU PUT HOLES IN MY BACK?!" I couldn't help but laugh at her innocence and frustration. 

To our disbelief, of the 32 foods we tested, Annabelle only showed a positive allergic reaction to ONE food. She is typically allergic to 75% - 100% of what we test for, and she's finally appearing to be growing out of her allergies. What a blessing. 

The only food she is allergic to from a skin test perspective is, Beef. I'll take it. 

The game plan is to introduce foods into Annabelle's diet very creative and thoughtfully. We need to meet with our Dietitian and GI in Richmond before we can begin a food trial. While having food in Annabelle's diet is a necessity, a hard relapse from Eosinophilic Esophaghitis is still life-threatening and an intro of foods must still be performed responsibly. We will evaluate what is in Annabelle's diet right now and then determine what foods she is desperately lacking and prioritize which should begin first. One food will be introduced, and 3-4 weeks later we will start a second food. Once two foods are in Annabelle's daily diet, we will perform another Endoscopy. 

This means over the course of the next three months, we will get two foods and scope / biopsy every 8 weeks. (Hurry up and wait, right?) It's a very very slow process but an essential one.


This is our main priority going back to Richmond. 
Secondly, we are instructed to put all our energy towards getting Annabelle into a Rare Disease Clinic as soon as possible. 

The two clinics we are recommended to consult with are either CHOP or Mayo Clinic.


Labwork
After spending hours in clinic, we headed to perform some bloodwork. This place was a bit more traumatic. Not only did Annabelle have a complete screaming meltdown and fight to not have to sit in that horrible chair with me as they drew blood.. but the entire wait in the waiting room was horrible. The doors for each room were made of tissue paper and we could watch as each child was called to the back and then hear them scream bloody murder. Talk about setting the scene for an already terrified toddler :(


Finally the day was over, and we were starving! Annabelle and I found a nearby restaurant, and promptly once we sat down, I asked her what she wanted to have "CHICKEN NUGGETS!" bless her heart. The poor child wants a chicken nugget so bad she can't stand it. She's never had a chicken nugget in her life and that's all she wishes for. That explanation was so difficult. She thought if she went to the hospital all day, and was so perfectly well behaved as she was, then she would get chicken nuggets from the doctor. Oh how disappointing!  Lunch was great, there were no chicken nuggets but it was a perfect setting as she called her daddy and told him all about the doctors. 

Our hotel was only about a mile from the hospital so I called and told them we would walk back instead of taking the shuttle. I wanted some fresh air and I think Annabelle and I both needed the time walking down the streets with the gorgeous fall leaves and cool wind blowing around us. She laid down and got some rest, she pushed the stroller and we laughed making goofy faces at one another the entire way. It was absolutely perfect. Everything about the walk back to the hotel was exactly what we needed, her and I. 



Once we were back into our hotel room, we took another shower and snuggled back into our comfy clothes. I texted a few people the update from the day, called daddy to let him know we were going to take a nap. Then pulled the curtains shut, phone on silent and we slept. Annabelle snoozed right away and I laid on my back thinking about the heart break of leaving that hospital without the diagnosis we prayed for but leaving with so much more information than I could have ever thought we would get. My worries didn't drown me far, I fell asleep almost as quickly as Belle did and it was wonderful. 

We got up around 530pm and I asked what she wanted to do. The night was young, the girls were free to do as we wished, anything, .... she wanted to go swimming :) The hotel had an indoor pool and games so we dressed appropriately and headed downstairs for a bit.




After the pool.. we took, you guessed it, another shower and then hailed a taxi to hit the town! We walked down the busy streets and took in the life of the city. I cannot believe I had the guts to do it, but we were only there once and her and I deserved the fun night out. We found a few unique toy stores, and then a restaurant of her choice for dinner. We both cheers'd our glasses and kept our pinky up during our undisturbed dinner alone together. It was a great night. The weather was cool but not cold, the timing was perfect and by the time we made it back to our hotel room, it was time to pack our things and get back to bed. 

The next morning we rushed to the airport and made our way back home to Richmond where daddy impatiently waited for his girls. I was so glad to be home, be back to my right-hand-man, back to my own bed, have a car but mostly - I was so glad for Annabelle to be back in her daddy's arms.