Thursday, September 22, 2016

Kindergarten Life

Last week, I had the opportunity to visit Annabelle in her classroom. The teacher uses the first couple weeks of school to focus on how everyone is unique and different in their own way, and Friday was Annabelle's turn to show how she is special too. We have a few books at home that we've purchased to help Annabelle understand what happens inside her body, with more understanding it's been able to alleviate some questions and fears (Mady's too). I thought sharing those books would be a good way to share some insight to the class about Annabelle.

One of our books is called "Eating isn't always easy". This is a wonderful book that explains Eosinophilic Esophaghitis, how the disease moves around her body and why it makes certain food hurts hurt her. While it's a WONDERFUL book for our family and our girls, I choose not to use this one for the classroom just based on the complexity of the material.



"There's More Than One Way To Eat" is one of our favorite books. It illustrates a day in the life of a tube fed kid and how similar a tubey is to everyone else, but how eating is different for them. The book explains the process for how a feeding tube goes into the belly like a straw and the different ways you can eat thru a tube: quickly (bolus) or slowly (feeding pump).

The book also portrays the story of two friends, one of which is in a wheelchair and one friend that isn't. All the while, retaining the feel that all kids are the same, have the same feelings, values, interests, humor.. some kids just eat differently and have special needs, and that is okay too.

I read this story to the class. The kids took it well, their questions were difficult at times but I allowed Annabelle to answer a few about herself after I shared the most age-appropriate answer.


After we finished the quick story about tube feeding, I also flipped thru some of the pages of "Real Kids, Real Tubes", which is our particular favorite of course... bc Annabelle is featured in the book 3-4 times AND on the cover of the book! How cool is that? The kids thought it was quite impressive as well.

Each page is full of children, teens and adults that are playing sports, living life and doing all the fun things just like everyone else, but with a tubey. Pages are themed, for example, "Tubey's like to dance" .. and show pictures of kids in dance performances or dancing around the house. "Tubey's like to go to the beach" .. "Tubey's have to be very brave" in which showed some pictures of kids in the hospital. Annabelle stood up and told her class that she often has to go to the hospital in Cincinnati, Ohio and while she used to cry for shots, she doesn't anymore. All the kids were fascinated and said "Whoa! I always cry for shots! You don't cry?" She was confident as she piped, "Nope! Not anymore!" 


The experience as I sat in front of a Kindergarten class (secretly praying they wouldn't eat me alive) was surreal. I looked down, to my right and saw Annabelle, criss-cross-applesauce, with the most life and sparkle in her eyes as she watched her mommy read a story all about her. She sat so strong and so confident. Bearing an illness that carries the weight of the world, she sat on the floor among peers proud. With her nurse behind her and her mommy in front of her, she absolutely sparkled and burst with pride. 

There is no better gift that I could have given her this school year than just that. A presence in her classroom, confidence in her fight, a voice to articulate to her friends what she is feeling, justification that she is unique and just as normal and weird as the rest of her friends. God bless that kid, she is raising me in more ways than I think I am raising her some days.



 

I've spent hours upon hours glued to my phone trying to plan our upcoming hospital visit (while juggling work!), so when the weekend hit, our family bolted for fun. We ventured to "Field Days of the Past". The girls had a wonderful time, they rode rides together, watched tractor and truck pulls, pet animals and laughed with one another. We did SO much walking and pushing Belle, but we did all had a great time.







This week was tough on our family. Madelynne and I caught a GI bug so Annabelle had to go into quarantine. A few kids in Belle's class are sick so she's been living in a face mask to protect her from germs.. between scrubbing the house in lysol, running Annabelle to the dentist and appointments, juggling a thousand Cincinnati Children's Hospital phone calls.. before we knew it, ANNABELLE TURNED FIVE!


Yes, I can't believe it either. Her birthday was Tuesday, September 20th and although she spent her ENTIRE day trying to convince everyone that it wasn't actually her birthday bc she believes her real birthday is Saturday (party day), it legitimately was indeed and our little girl is no longer little. She's turned into a little lady and we are so very proud of who she's becoming.

From the 3lb 10oz, undercooked nugget that we brought home, to the rockin 38lb fighter she is today, our house has been monumentally changed for the better as we've grown into our niche of the Bishop family.





Thursday, September 8, 2016

Victory! She made it to Kindergarten!

I can't believe it, the day is finally here. A day that doctors told us Annabelle may not make it to, a milestone we didn't believe we would face, an amazing step in her journey we always prayed she would experience. Annabelle made it to Kindergarten!

As we prepared for bedtime, Madelynne found the book that we bought for her that read, "The Night Before Kindergarten" and asked to read it to her sissy. With each page, Annabelle laid in her sister's lap in awe, absorbing all the words on the pages but not asking a single question. We said our prayers together and before we knew it, the lights were off. Both girls were full of butterflies and did get up a few times but were both asleep by 8pm, thank goodness.


 

I had been working storm duty for the power company for three days and had just gotten home earlier so the night was quite chaotic, trying to pack their backpacks, pick out lunch with limited food because I hadn't been home to grocery shop, and iron their first day of school outfits. As soon as the kids things were lined at the door and we laid down, I fell asleep. Im pretty certain in record timing too..

FIRST DAY OF SCHOOL
6:15am, both girls come running to our bedroom, one after another with a smile from ear to ear. "Today is the day! It's the first day of school!!!!" We had an hour to eat breakfast, get dressed and get out the door. Our nurse showed up with a big smile and said, "Today is my 1st Day of Kindergarten... again!! yay!" :) She and Annabelle were so excited for their big day. Daddy checked the tire pressure on the wheelchair and put a little more air in the tires and I fixed Annabelle's pigtails with matching bows.


Only once that the morning did Annabelle tell me that she was sad she can't ride the bus with her sister and that she has to ride in a wheelchair, but we blew it off and smiled back "Annabelle, I am sorry you can't ride with your sissy, but HOW COOL is it that you get to ride your OWN wheelychair bus?!" Mady chimed in, "yea Annabelle.. im really jealous, you're really lucky." Annabelle smiled in victory and bounced away. The distraction worked.. for now.


The morning began to get hectic when it was time to get to the bus. Madelynne's bus is to arrive at 7:20a at the bus stop down the street, Annabelle's should arrive at 7:33a in front of our house. We headed out the door and made our way to Mady's bus stop.. as soon as she was loaded and I was waiting for the bus to pull away, I noticed Annabelle's bus pulling up!


Daddy had stayed in the driveway with Annabelle so I sprinted down the street (in heels for work, mind you) and tried to take a few pictures of Annabelle before she was loaded up. She sat so confident in her chair and was so proud of herself as the bus got in position for her. You could definitely tell she was a bit apprehensive but she wore a smile that showed otherwise. She was ready for school and nothing was going to stop her now :)




The process for loading her onto the bus takes a couple minutes. They have to unlock the bus doors, check ID and lower the gate for the wheelchair. Once she's finally on the bus, they have to lock and strap her chair down with the transportation brackets we have installed on the chair and then they can finally leave. Unfortunately, we live on a main road in our subdivision so this long process is certainly holding up traffic.. but they'll have to get over it.



I have to say, the best part of having a nurse at the school with Annabelle is that I get a play-by-play on how she's doing all day and pictures of my sweet baby.



Our nurse texted me shortly after arriving at school, "Mom! You forgot to give me my lunch money for coffee!" haha. Both Pat and Annabelle had a wonderful first day of Kindergarten and we are so happy.


SECOND DAY OF SCHOOL
A little different.
The morning was much harder but the excitement was still running. The first day gitters were gone as Annabelle dressed herself for the school day. We talked about her favorite parts of school and she told me she loved everything, but she doesn't like her tubey or wheelchair.. her little heart was hurting and the anxiety of 'being different' was certainly weighing on her. This morning was tough but we are working thru it.

She wouldn't eat all day Tuesday.
The nurse and I texted multiple times thru the day and discussed what could be the problem and the best we could come up with is the difference in schedules. When we're home, Annabelle gets a bolus feed (fast tube feeding with her elemental medical food via gtube) at 9am and 1pm. We usually eat lunch around 1130am so this scheduled has always worked for us. Now that she's in school and they eat lunch much earlier, I think her 9am bolus feed is upsetting her stomach and throwing her appetite off. We're going to adjust our feeding schedule to move the bolus feed up to 8am and afternoon feed to noon. Hopefully this will give Annabelle a little relief and her appetite will improve. It's just an adjustment that we're going to have to work thru to find what fits her best.


MEDICAL UPDATE
We have the results from the EKG and Echocardiogram. Both tests returned normal which is great. Our doctor in Richmond has sent the results to the Neuromuscular Team in Cincinnati for review. As soon as our doctor there puts in the order for the Muscle Biopsy, we will be able to schedule our next surgery. I am getting more and more nervous about timing and scheduling so my fingers are crossed we can finally get a date on the books!


This week has been a whirlwind for our family. So many emotions were rolled into making this week happen and we couldn't be more relieved to watch our dream for our baby unfold. Doctors for years have told us that putting Annabelle in school shouldn't be our priority, that we need to only focus on her quality of life while we have her.. but the more Annabelle defies the odds, the more we believed that her best quality of life WAS going to school with her peers and being a kid just like everyone else her age. She wants to do all the things her sissy and friends are doing, she wants to be included in activities even if that means risking her health - she wants to LIVE life to the fullest and we want the same for her. We work so hard at finding the safest but fair balance between the two. Letting her live a fun life vs keeping her in a safe medical bubble. There is a lot of give and take, where it feels like mommy and daddy are stepping out of our comfort zone a lot to satisfying Annabelle's desires but we are making it happen. If it makes this baby girl smile, than it's worth it. And the smile she's worn this week is worth all the tears of frustration 1000x over!



Friday, September 2, 2016

Echocardiogram, EKG, Kindergarten, Oh My!

Belle had to fast Wednesday night so I could collect a fasting urine sample to take to LabCorp Thursday.. she did good. She asked for a cup of formula at bedtime but didn't wake for another thru the night. I laid in bed Thursday morning scrolling thru my phone and planning the day when I heard someone make their way to the bathroom - I BOLTED out of the bed and sprinted down the hall, not knowing if I would find Mady or Belle... fortunately, it was Belle and I was able to stop her before she went potty.

Urine sample collected, measured between two cups, one of which goes into the freezer: CHECK. Were off to a good start!

Thursday was a busy day for the Bishop ladies. There was a lot of anticipation for all the things we needed to accomplish.. I knew the day had the potential to stress me out so I laid the pressure on heavy for the girls too "Mady, Belle - we have a LOOOOOOOOT to do today, and it's just us three. So mommy is probably going to be a nut running around. I need you to bare with me, be on your best behavior, get along and help mommy out. Got it?" It's VERY rare that I give them a forewarning like that... so when they heard the words, they immediately stood to attention and asked what they could help with. Because let's be honest, if the mommy is having a bad day, evvvverybody is having a bad day ;)

We needed to be at the hospital by 11am for the test. But before we check into Outpatient Registration, we needed to go by LabCorp. Immediately after the hospital, we had Kindergarten Orientation for Annabelle and then 2nd Grade Orientation for Mady. So I knew... by 10a, my ducks had to be in a row (add salt to a wound - im on a diet and can't have coffee!! OMG!)

The girls and I organized and distributed the mounds of school supplies into their own bags. I wrote names on their things and we lined our bags by the door. The girls didn't argue when I picked out their outfits and to my surprise, we were all ready to roll out the door on time! (I miracle I tell ya, a MIRACLE)

The car ride is when everything changed. We had been having a smooth, organized, cheerful day until Annabelle reiterated, "Mommy, we're going to the hospital NOW?" .... "Yes baby, we're going now and as soon as it's over we will go straight to your new school to meet your teacher!"

Her tune changed. The tears began and anxiety flooded the car. Mady's eyes were the size of quarters in a panic.

I was actually looking forward to this visit, for both girls. I wanted to ease some of Mady's worries by showing her that Annabelle is *always* subjected to painful procedures when we go to the hospital and allow her to have a glimpse into what's going on with Annabelle when she does go. I also wanted Annabelle to experience the same, the opportunity to have a doctors visit with no pokes or boo-boos and a moment to have her sissy by her side and hold her hand. These girls are everything to one another and their bond is something I could have never taught on my own. They look out for each other and while our family circumstances isn't ideal, they together, have grown to absolutely own this journey with one another. 

The car ride was tough. Mady tried repeatedly to remind Annabelle that she wasn't going to be be hurt today but Annabelle had made up her.. she simply didn't want to go.

We arrived in time to make the run to LabCorp before checking in. Our receptionist was wonderful and was able to distract Annabelle and make her laugh a bit. As they took us to Cardiology and we walked the long white, sterile halls, Belle began to cry. I hate moments like these. We are committed to being there and doing the test, I can't negotiate any of it with Belle and while all I want to do is ease her anxiety, I know the only way to do that is to let her win and we leave.. but that isn't an option. It's never an option. The only stupid frickin option is to put myself in front of her and remain clear that we must do the test and watch in her broken eyes as mommy has once again broken her heart and let her down.



Mady offered to say a prayer for her.


I don't know if my heart crumbled or burst, but I know all I wanted to do was break down as I heard Mady's sweet words. "Dear God, please let my sister know that she is going to be ok and you are going to take good care of her. Don't let her be scared and don't let the doctors hurt her......"

Belle watched as her sister just spoke to God with whatever was coming to her mind. They both said Amen and we were called back to get started. The Echocardiogram was easy, of course, but the anticipation was still heavy for Annabelle. I think just the aspect alone of having to be in a hospital and not running around like a kid is starting to weigh her down and remind her that she's very sick. I kept whispering to her that she was doing a good job, but she didn't want to look at me. She paid attention to the monitor in perfect, motionless, silence... or she watched the wall. The test itself took about 40 minutes.




After the Echo was finished, it was time for the EKG. Mady wanted to lay with her sister and they told each other stories until the nurse came in to perform the test. Once it was finished, the girls pulled each of the stickies off together.



The afternoon carried on just as quickly as our morning began. We met daddy for a super fast lunch after we left the hospital and flew home to gather our things before going to the school. Annabelle did awesome during her orientation and she loved her classroom. She even knew some friends in her class! We adore our teacher and I think it will be a wonderful fit for her. I dropped all her medical supplies off with the clinic where OUR nurse will administer all her feeds and care. We do have a few more contracts to sign with our nursing agency and give to the school but those things are just about wrapped up.





We should have the results back from the cardiology tests hopefully by next week. As soon as our pediatrician here in VA reads them, they will be sent back to Cincinnati Children's Neuromuscular team where they will read the results. As long as everything clears, our orders for the muscle biopsy will then be written and we can began scheduling the OR. We need three surgeons in the OR for her next surgery, so organizing this chaos hasn't been easy.. but were almost there! Fingers crossed for a happy healthy heart so we can be cleared to move forward.



Friday, August 26, 2016

Annabelle's Going to School!

We WON!!!!!!!!


It hasn't been pretty.
It hasn't been fun.
and it SURE hasn't been easy.


but baby girl is headed to Kindergarten!!








We met with the school again this past Wednesday. Before the meeting, AK, our nurse and I discussed our game plan, what we would settle for and which aspects of the agreement we will not budge on. I have spoken to so many professionals, medically and academically, parents and family over this situation, so I felt confident in what we were asking.. but I also confidently felt like we would lose. I refused to budge on what Annabelle deserves and if that meant we walk out of the school defeated and entertaining the idea of home-schooling her, than so be it.


 




Fortunately, the Health Services Coordinator for the county recognized Annabelle's daily needs as far more cumbersome than what the school nurse would be able to provide and she started writing down notes. The further we got into our discussion on Annabelle's needs, the more solid the team felt that the best avenue for Annabelle in the public school system would be to develop an 'Individual Health Plan' that essentially outlines our daily Plan of Care (that we already keep 100% up to date with our nursing agency anyway). Our private duty nurse will accompany Annabelle to school every day and carry out all her daily needs, just as we do at home (medications, tube feedings, venting, vitals, assessments, more meds, more feeds, more vents etc etc etc).


The 504 Plan outlines the classroom accommodations. The plan protects Annabelle and will allow her:
  • to be released to her private nurse for any and all medical needs such as feedings etc
  • preferential seating close to instructions (ADHD)
  • visuals or manipulatives to sustain instruction (ADHD)
  • rest / nap in the school when tired. If this doesn't help, she will be released from the school without penalty
  • reduce work such as half an assignment
  • use her wheelchair to lunch and all resources (were hoping she won't need or use it much in the classroom)
  • adult support during field trips (her nurse)
  • access to the bathroom whenever necessary
  • to eat or drink when needed
  • absences, early dismissal and tardy days without penalty
  • alternate arrangements for classroom time missed due to school outbreak, hospitalizations or illness. school will provide a teacher into the home for 6-8hours of instruction x week missed of school.
  • wear a face mask to protect from germs
  • school will provide an immediate update anytime their is an influx in illness in the school (cold, flu, virus etc)
  • permission to switch to 1/2 school days if we find the full day is too much
  • special transportation to and from school and during field trips 
I admit, I did get upset during one point in our meeting. My emotions were just too heavy to hold back and silent tears found their way dripping from my chin. I had walked into the room fighting so strong for Annabelle to get the individual medical care she needs because she is so unique.. but when the time came to discuss transportation and her wheelchair, suddenly I found myself resisting those accommodations. This is pathetic, I know, so please don't judge... but the vision I have for my little girls, both of them lined up waiting for the bus on the first day of school is forever gone. That day that I dreamed about when Mady would take her baby sister under her wing and sit beside her on the bus, and when they get to school she would make sure her sissy gets to her classroom okay - that isn't our reality. Our reality is that Annabelle will wave as her sister and all her friends get on the school bus in the morning and Annabelle will wait alone for her own special needs bus that can transport her in her wheelchair. She'll be alone. Her experience will be vastly different than what I want for her. I want her to have as normal as possible of a school experience as she can, but still remaining safe. I don't know... the words I type ramble just as much as the thoughts in my head, but my heart is hurt. We continued the conversation about the special needs transportation and then carried it over to field trips - on those occasions too, she won't be permitted to ride with her friends, she will ride alone on the special needs bus and meet with her class once they arrive.. Their first field trip is to the pumpkin patch, and I thought "There's no way she can ride around in a wheelchair to the pumpkin patch. And even if she walks, there's no way she can make it the hours they will spend there... the first field trip of Kindergarten will be a disaster" - and my heart sank again.



All things considered, AK and I are happy. We are so relieved that Annabelle will get the opportunity to have a classroom experience just the same as the rest of her friends, but we are cautiously nervous. I am terrified beyond belief over the germs in the school and how she will handle the cold/flu season.. and my mommy heart panics for her as she will for the first time be thrown into a classroom and big school.. surrounded by kids in the hallways, lunch room, recess and extracurricular activities and she'll be in a chair. she'll be wearing a face mask. she'll be hooked up to feeding pumps. she won't have the energy and endurance to keep up. My heart hurts that she will identify herself as vastly different and be ashamed and discouraged of who she is. These are all thoughts she communicates openly with us and it kills me. I want her to have fun, I want my baby girl to laugh, run and play. I pray with everything that the kids are not cruel but are welcoming and loving to her. Kids can be so, so mean and Annabelle doesn't deserve that type of judgment at this point in her life.  I want her to shine and excel, I want to see her confidence burst.


We are happy and we won a huge battle this week... but now, I'm scared to death. I wish I had as much courage as Annabelle...


Wednesday, August 17, 2016

Planning our next round in Cincinnati

We have multiple appointments that we're working to get on the books.. multiple appointments and also multiple procedures.

Most the procedures Annabelle needs performed will be done while under anesthesia, so our mission currently is to work on the coordination of that.

I called Dr. Putnam's office to speak with our GI / EoE Clinic Team and schedule our next upper and lower endoscopy. They informed me that Dr. Putnam is pushing Annabelle to the Neurogastroenterology and Motility Disorders Clinic.. we discussed this before but I just wasn't quite prepared with the fact that we would be exploring more Gastrointestinal disorders. I knew it was happening, it just sucks to face it.

Our doctor at the Motility Clinic has already ordered tests for Annabelle. The first of which will be an outpatient procedure (that the nurse over the phone warned me, she will HATE). It's called an Anorectal Manometry. Annabelle will be awake as they insert a camera, balloon and tube into her bottom. They'll inflate the balloon at various places thru her colon and large intestine to measure the strength, sensation, movement and reflexes she has to what would feel like stool. If she doesn't respond to the balloon, than we know there is a problem that lies in that specific portion of her intestine / colon. They'll then move to another portion and keep testing. The procedure takes approximately an hour but this will give the doctor an idea of where her body isn't working and allow him to pinpoint which areas he will treat.

The next procedure the motility specialist wants to perform are botox injections into the anal and rectum sphincter to promote the nerves to begin to move and function again. This procedure will be performed under anesthesia. Before he can begin though, he will also dilate all the problem areas to ensure the botox is reaching each area it needs to work.

Other tests that will be performed while Annabelle is under anesthesia are the Muscle Biopsy and also Upper Endoscopy. Therefore, it's taking a lot of leg work to coordinate three surgeons for one patient at the exact same time: Gastro, Motility and General Surgeon.

Those are our main procedures (so far) that we need to perform during our visit. However we are also scheduling with:
  • Human Genetics to discuss the exome genetic testing. AK and I will be tested as well as Annabelle during that time. I'm not certain what those outpatient procedures are quite yet. 
  • Dermatology for the bumps and rashes all over her skin
  • Sleep Clinic to follow-up from the sleep study we performed in April. I know this doctor also wants labs performed and belle will require some cardiology tests before starting the medication they want her on (if we choose that route). 
  • Cardiology for an EKG and Stress Test, this is a requirement before the motility team can perform their tests
  • Neuromuscular as a followup from our last visit and to discuss the muscle biopsy that she is ordering. Dr. Tian strongly believes still that we are nearing either a Mitochondrial or Metabolic diagnosis. I hope this muscle biopsy gives an answer.
  • Motility Clinic in the beginning of the week so they can meet Annabelle in person and also talk with us about their plans for the week. We will have a follow-up at the end of the week to discuss all the findings and how the surgery went etc.
  • and of course, Gastroenterology. We will consult with Dr. Putnam before and after the surgery and when the biopsy results come back. We are praying that our numbers are going down and the EoE isn't progressing more than it showed in April. Our instructions (since we are in the middle of a lot of testing) were to do nothing with Annabelle and pray with everything we have that the EoE remains calm until we can get our testing completed and figure out what is going on.  
So while we are trying to work and coordinate these appointments, we are also working full steam ahead at home re: Annabelle beginning school. Her team at Cincinnati was quite frustrated about the school not honoring an IEP, so I have been digging into my own research on what I need to be fighting for when it comes to Belle academically. Fortunately, we do have the blessing of an entire nursing team behind us here at home. The nursing agency our nurse works with is wonderful at advocating for their patients / kids, so I have leaned on them a bit for guidance. So we'll see where that takes us :)

For now, it's been school supplies shopping... 36 glue sticks, 60 pencils, 8 composition notebooks, (Im seriously not kidding on any of those) and of course, new school shoes!



Our appointment with the school is next week and hopefully by then I would have heard from the hospital about a date when we will return to Cincinnati. I just hope it isn't around the holidays again..

Friday, August 12, 2016

An emotionally exhausting Cincinnati day

Tuesday Evening
I flew home as fast as I could to finish packing our last minute things. Annabelle was laying on the couch and just watched as I made passes by her over and over. She knew exactly what was going on. My mom and grandmother came to say goodbye to us before we left, but Annabelle didn't want anything to do with either of them. She just watched cartoons and lied down on her blanket. 

I packed two piles. The first pile was everything our family would need during our 3 day Florida trip with friends. AK would be loading the car with those bags and hitting the road first thing Wednesday morning. The other pile was the carry-on bag for Annabelle and I to go to Cincinnati. It had to hold everything we would need for two days, including all her medical supply. I knew that from the moment I left my house until noon the next day, I would be carrying her everywhere so packing a bag was very strategic. Before hitting the door, I went to my bedroom and took multiple deep breaths.. a fast shower and ran downstairs to find my mother and grandmother mischievously planning... mom somehow talked our grammy into a spur of the moment, no clothes or bags packed, road-trip with me and Annabelle to help make the trip easier for us. (Easier? Not sure. More fun and great distraction? Absolutely.) Before I knew it, I was saying goodbye to AK and Mady and Annabelle were standing in the driveway whispering to each other and hugging for extra long periods of time as they said their goodbye's. They argue often, but when it comes time for Annabelle to have to go to Cincinnati, they both lean on one another and share into that sisterly bond. I kissed Mady, picked Annabelle up, and the four of us loaded into mom's tiny sports car to head to Alexandria, VA for the night. 

We stopped at Joe's Crab Shack to avoid the rest of Fredericksburg and NoVA traffic.. the night was perfect. The drinks were delicious, Annabelle was able to play while we ate and the food... oh, the food was steaming perfect!



I couldn't sleep Tuesday night. I knew we needed to leave before 5am and was worried we would oversleep. I was also scared to death all night about not feeding Annabelle and how she was doing. She tossed and turned a lot but didn't wake much. Mom and I got up shortly after 4am and began to get ready. I dressed Annabelle and could immediately tell she was weak already. The airport wasn't far away, mom dropped us off and we made our way to our gate. Annabelle didn't walk at all. She didn't want to even stand while we waited to board the plane. In between begging not to go to Cincinnati, she would take short naps, wake up, cry, and go back to sleep. It was a hard flight...  


Our plane landed right on time. As I carried Annabelle, for what felt like 3 miles, across the airport from our plane to Enterprise pick-up, she begged and begged not to go to the hospital. I hardly responded. At this point, engaging in the conversation just gives her false hope that she has an opportunity to negotiate out of the inevitable. We boarded the shuttle to enterprise and she began begging again, in front of everyone as they stared at me... I felt like I stood 2 inches tall and all I wanted to do was break down and cry just as hard as she was. I want her to see how much this is killing me too, but I can't. Being strong but sensitive, tough but compassionate is. so. hard!

Once we got our car, she fell asleep. Fortunately, she was too weak to continue to fight and cry. Our drive was about 30minutes and I swear she was asleep within the first 5m. Thank. Heavens! It gave me a few minutes to pull myself together. Breathe and freshen up from the hustle of the morning.



As soon as we arrive at the hospital, it began all over again. This is when I see that diagnosis of "anxiety". It's in full motion as she panics, her head whips from left to right, her breaths are shallow and weak, her voice is shaky and her eyes are so deep and dark with sadness and defeat. We sit in the waiting room and she won't even sit beside or look at me.


She sobs, "Why are you making me go mommy? Please, PLEASE let's don't go to Cincinnati. I don't like the hospital! Why do you always make them hurt me? Please MOMMY!!! .. please . . . . . . I don't love you, I'm not your friend anymore"
..... she has no one anymore.
She's completely alone, in a huge city with her mommy and not one person is in her corner to protect her. I look into my daughter's eyes and can see clear as day how much I am damaging her, and there's nothing I can do about it. I will never be able to repair this emotional trauma. She's pleaded for hours, Ive tried talking and explaining to her why we have to do these things, she begs me not to hurt her and I do exactly that - I drive to a hospital, carry her inside and hand her over to a nurse who will then bring in a friend as the three of us hold her down and do exactly why she's begged not to happen.

The lab draw was quick and painless. She got it on the first stick but did have to do some digging to find the vein. Annabelle never pulled away. She screamed for us to stop all the way until the needle was in her arm, but then she held still until it was over. They also needed a urine sample. After the blood draw, we tried to do that but she didn't have to potty.. I agreed to take the specimen cup with me and collect next time she potty's and just drop it off to any of the three hospitals we would be visiting over the course of the day.



Afterwards, we headed to the next hospital where we would pick-up her wheely-chair. I hoped it would boost her spirits since the bad part of the day was behind her, but that's the thing with depression, trauma and kids that suffer this life.... shiny distractions hardly work anymore. Without a doubt she was happy that we were picking up the chair (and so was I, my arms were nearly ready to fall off from carrying her everywhere), but the exhaustion of defeat was just far too heavy for her to force a smile.

These are the moments that kill me the most. 


After making some adjustments and mechanical fixes to the wheelchair, I signed our $8,000 bill and we left. Annabelle wouldn't eat any of the snacks or drinks I had for her and I knew she needed a feeding ASAP so we decided to have a lunch together. Perhaps it would cheer her up? Not the case. I did hook her to a pretty fast feed, because she needed it. But it made her nauseous.. she was then mad at me for feeding her and making her tummy hurt. It was a lose - lose kinda day. Fortunately, right after lunch, it was time to head to our third and final appointment of the day = Human Genetics. The appointment was across town so Annabelle fell asleep on the drive. We got there early and I sat in the car and prayed before going inside.

Dear God. Hear my prayer, please. 
I am broken.
I am shattering with every grain of salt this journey is pouring into my wounds.
Why did you give me a baby so broken? Why do you think I am strong enough to make it thru this? What is the purpose of torturing this innocent child? and hasn't it been enough?
I can't see clearly anymore. I can't tell the difference between fighting for my child and protecting her from the cruel world. 
I can't feel anything. My words, patience and judgement to all those around me has become so jaded and callused to anyone's feelings. 
I know I am strong, thru you. But I am so weak in my own knees. 
I used to parade with confidence and now I question every decision I make. 
Please, give me the clarity, knowledge, wisdom and love that I need to continue to take care of this baby girl.. because I don't know if I have it anymore.. and Annabelle needs a mommy that does. A mommy that can feel the love she gives to the world, a mommy that can see the progress she is making or the ailments I need to recognize to help her doctors continue to care for her. She needs a mommy that can make only the best decisions for her. My family needs me God, and this journey is tearing me apart. 
Help. 


I was so weak when I looked at the clock, it said 1:20pm. Our appointment was at 1:30pm and I knew I needed to pull myself together and get inside for our appointment. I re-assembled the wheelchair, gently woke Annabelle and we made our way inside.

Dr. Burrow's is wonderful. Our appointment was every bit of an hour and a half of talking, discussions and planning. When we arrived, he already had an idea of what he wanted to happen and where our next steps needed to be. He did an evaluation and exam with Annabelle (confirming again her Hypermobile and Hypertonic Joints), we reviewed past labs and talked about the progress she's made as well as her global decline. He ordered that it's time we complete our Neuromuscular DNA Sequencing Panel and also prepare ourselves to begin what we've been working towards - Genetic Exome Testing. (!!!)


When we return, AK and I will sit down with Dr. Burrows and have a heavy discussion about the testing. The positive in doing this type of test is that we may finally get the answer we've been looking for, the diagnosis for Annabelle's global issue. But the downside, is that we will also likely get a lot more information about our baby girl that we haven't bargained for ... and my never want to know. This testing comes with a price, (not just literally, because yes, it does, and it will likely be cash as hospitals and insurance do not pay for research and testing like this.) Learning Annabelle's genetic story requires deciphering all possible gene interactions. We may learn about disease-carrying mutations that she has... terrifying diseases she could carry but never develop. Or diseases she can pass onto her children. We may learn about much more that is hurting her that we never imagined or may learn that she has multiple precursors such as cancer's, huntington's etc. More importantly, AK and I will also be tested in order to cross reference her DNA with ours to verify a positive diagnosis. This means, AK and I will find out which of the two of us passed on whichever gene that is hurting Annabelle.

All of these are burdens that I imagine will be unbearable to live with. The thought itself makes me ill.

When we talk with Dr. Burrow's at our next appointment, we will discuss just how much information we want to LOOK for and how much information we want to KNOW when we get the results. In the meantime, we have a lot of thinking to do...

I left, once again, feeling more exhausted than hours prior. The message and quotes on the walls as we were leaving, made me stop. I read each of them to her as we left... I needed to read those as we walked out of the hospital for the last time of the day.


Annabelle and I stopped for a bottle of water for her, and a terrible-awful-beverage choice for me.



 The trip to the aquarium was intended to be fun. We had a few hours left of the day, Annabelle still had not gone potty so I was still walking around with an empty specimen cup (we never did get a sample. She didn't potty for the first time all day, until late that night). I kept pushing fluids and she was just still too weak. The fasting took a huge toll on her body. I also think she was being slightly spiteful and holding it because she was still so mad with me. The aquarium itself was beautiful as always. I tried picking Belle up to let her see the things in the top windows, she didn't want me to touch her. I offered to do face painting (and I even told her I would get mine done too!) it didn't work..


This is the face of "broken" :(



As we walked around, hunting for a blowfish in every single tank, an employee came up to Annabelle and asked why she looked so sad. Annabelle told her it was because she has boo-boo's that won't go away and we keep having to come here to get pokes. The poor employee forced a smile and said, "let's go find more blowfish", and she led Annabelle towards another tank. Within a few minutes, the manager approached Annabelle on one knee and asked if she likes penguins, she halfway smiled. We took the giant elevator to a special room at the aquarium and inside the room were a bunch of little penguins. It sure didn't work to break the sadness from her heart, but it did bring a smile to her face as they squawked at one another and she got to pet them.  




Finally it was time to head home. We dropped the car back off at Enterprise, shuttled to the airport and had dinner. As we were approaching security, I told Annabelle that before we get on the airplane to go to Florida, she had to smile. Because noone is allowed to go to Orlando, Florida without smiling all the way there. It worked... she gave me a smile, waved two thumbs up for daddy that we were on our way and we headed to board the plane. 

 

As she laid in my lap on the plane that night, I watched the clouds pass by us. 
Belle told me we were in heaven. 
I feel like we're in hell.