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.

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!

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.