How to Get Through Sophomore Year with EoE and ADHD

Abigail just finished her sophomore year of high school. And it was no easy task for her. I have said it before and I'll say it again... no none works harder than her. (Anna too has challenges and things she's had to dig deep and get through - but that for another post) 

I've written about it a lot on this blog of mine. In fact in the labels you can click Eosinophilic Esophogitis and read from the beginning. But in a nutshell, this digestive disease that Abigail has lived with her whole life is still there and it causes her to be in pain daily. She has trouble swallowing food. Food can feel like it is stuck in her esophagus, and other 'fun' things like reflux and constant nausea. 

Not related to EoE she is currently taking growth hormone replacement therapy (not enough growth hormone to grow) to hopefully grow and we are constantly trying to get calories in that girl of ours so that her weight can catch up with what the growing meds are doing. So each night she gets a shot from me (I've gotten quite good at them by now!) 

Someone who is in that much pain each day get behind in class then there's time to do her work. She can't work quickly because she's in pain. 

And then there is ADHD to add to the mix. I've heard it described like this. Asking a student to focus when they have ADHD is like asking someone with broken legs to walk upstairs without their crutches. Yup, not possible.

And one more thing: lack of sleep. Not just lack of hours that a hard working / staying up too late to get work done high schooler does but lack of good sleep since she sleeps with a brace due to scoliosis. She straps that huge thing on like and does the best she can. I'm amazed! 

I'm not typing all of this to make a huge list of her difficulties. No, not one bit. Believe me, that girl has a lot going for her as well. She sure does! Like a dynamic personality, a never quit attitude, and love of learning. She's got it all. She just has to do it all in pain. Every day!

So how did is get through sophomore year? With AP Biology and all the other classes honors level? 

Here's how: 

Surround Yourself with Friends

Now I don't have a ton of pictures of her friends. I really don't. But they are there for her every single day. They are such a tight group that adore each other - and this mama is grateful for them. 

Have Family Support

Every single night Scott stays up with her until late late late - around midnight most nights. He never leaves her side. He never gives up on her - won't let that disease win (not EoE or ADHD). Night after night. Some nights she's independent and he just hangs out with her in the playroom (now homework room) and some nights he's hip to hip with her - working along side of her. He helps to keep track of assignments and lets her have control but with his help. 

There are more pictures like these but gosh, this is the only one I can find right now. Night after night of sophomore year was just like this. 

She also has the best big sister in the world who, even though she is away at college is there for her little sister. They talk, text, and when Anna is home there is no one on the planet that could be a bigger cheerleader. She always has been. I love this old video of Anna helping Abigail eat when she was a toddler. (I miss those days) But seriously, look at how determined that big sister was at getting calories in her little sister! 

Have Great Teachers

Well I certainly don't have any pictures of Abigail with her teachers but there are some really great ones in that high school of hers. A few went above and beyond the 504 accommodations that were already in place. They met with her one on one before school and after school. They helped her to prioritize and figure out the best path for herself. I wish I took a picture of her in her 504 meeting advocating for herself and the accommodations she needs going forward. She speaks so well, confidently and accurately. I am just so grateful for good teachers that make a way. 

Last Days

Those last days in early June feel like a blur; they really do. Scott was busy with his middle school. I was tired to my toenails with my fourth graders and trying so hard to end my school year well. But we had Anna home at that point and it made all the difference. 

I took this picture of Abigail getting out of the car on the last full day of school before finals. 

Anna took this one when Abigail walked in the door after her very last final exam (the week after that 'from the car' picture above)

And this cute video too:

So school is over (for us here in CT since June 16th) and it is soooooOoooo good to be done with all of this and have a break. Looking forward to some chill days at home, getting some house projects done, organizing in a big way, and some adventures as a family! 

We are so proud of you Abigail Mei! 

Written by a Fourteen Year Old ~ A Poem on her Disease

 What they don't see

Crying baby

Eating nothing

Shoving odd things in my throat

Doctor visit

No real answers

Wondering in a waiting room

Answers bringing 

Stone faced, silence

And a disease you can't pronounce

Food restrictions 

Medications

Constant pain no one can see

Growing up

But not in height

Leads to questions I can't take

"Go back to elementary school"

"Why don't you just eat"

"You're too young to be in pain"

Sometimes it makes me question

I choose to bloom from this seed of pain

Not because anything else has me rooted here.

I choose to grow stronger from this stone on my path.

I will not let what they don't see get in my way

I am brave enough to get IVs since I was an infant

To get an injection every day for the next two years

I am strong enough 

Not to accept new medical conditions

But to work side by side with them 

Because we are not one

But two separate beings

I am compassionate

I am loving

I am creative

I am curious

I am me 

(Abigail, age 14) 

Testing and Sleeping

Back in this post I started shared how Abigail is undergoing some testing this summer due to lack of growth. She is fourteen and less than zero % on the growth chart. We've been monitoring this her whole life. There are issues possibly related to EoE and her eating issues but not for sure. She's monitored by specialists. This summer her endocrinologist decided to have further testing done with the possibility growth hormones. This is an extremely complicated issue and we are taking it one step at a time. Todays step: four hour test in the infusion center to monitor her growth hormones. She did amazingly well and I'm so proud of her. But she is so tired from this ordeal today (followed by a regular dr appointment)

It started off cozy and relaxing. She drew on her ipad and I read... 

I am loving this book so very much and am in a zoom book club every Thursday night. 

The medications given mimicked sleep so that they could monitor her hormones. They drew blood (from the IV) every 30 minutes. She fought sleep and mid drawing she would fall asleep, wake up, and fall asleep again. 

Until finally she couldn't fight it anymore and was in a deep sleep until it was over. 

Even when she came home - a few hours asleep on the couch. 

We are all looking forward to the answers this long test will provide as well as direction for the next steps. 

Endoscopy

Since she was 22 months old.

Games with daddy in the waiting room.



Gloria... her favorite nurse



IV like it's nothing



After they take a biopsy of her small intestine, stomach and esophagus we wait for her to wake up



Wheeled out to the car



Sipping her slushy

Chasing Rainbows Through Tears

I didn't take my phone out to document the moment. But I'm pretty sure I can remember forever anyway.

Today was no school. It's a Jewish holiday and we have the day off. Perfect for scheduling an appointment that both Scott and I need to take Abigail to.

The endocrinologist. Anna has been teasing her sister {in a sweet way} that it's the "short doctor".

In a way she's right.

Her primary physician and her Gastroenterologist requested that we go.

She's had bone scans for her height and weight - trying to figure out why she just won't grow. It is due to her EoE? Or is there something else.

There's nothing else I'm sure but it sure is hard.

Abigail is brave.

She's been dealing with a chronic disease since she was first diagnosed at 22 months.

She's happy - go - lucky. Teachers love her, doctors love her, nurses leave their shifts to visit her, we adore her.

But today was weird, different.

Another doctor appointment. Nothing new.

But today, out of the blue, she got off the exam table, climbed into Scott's arms and cried.

She was tired of doctors. Tired of having to work at gaining weight. Tired of the ongoing, life ongoing, struggle with a life like this.

This new doctor was brilliant - and she went over things so very carefully with us. Left for a while. Examined the bone density scan. Came back and decided on more tests.

Concerns about bone health, weight, height among other things.

I scribbled down notes as I always do in a medical notebook too full for a twelve year old.

She is quite certain that Abigail's growth is compromised by the medicines she has to take for EoE. Stopping growth is a side effect.

But she can't go off the medicine. The medicine allows her to eat - and that is quite important.

Based on the charts and what they see now she is predicting her at a height much shorter than 5 feet.

So we'll do more tests next week and meet again with all of these specialists.

Feels like chasing a rainbow sometimes - there are no concrete answers. Just a circle of 'these are the concerns' but there's nothing we can do about them because of the meds she needs.

I liked it better when she was little and colored through the appointment. She had no idea what was going on. She listens now and even participates in the conversations.

And cries.

Cries as we chase rainbows through tears.

Endoscopy and Thoughts

Yesterday I walked out of my sweet classroom and dove home to my daughters and April vacation week started. Even though it was ** snowing ** it felt so good! (especially because my house was all clean)

I have quite a list of things we must get through this week off - because when we head back until the very last day of school in June it's quite chaos. Good chaos. All good things. But there's no way I can teach all day and fit in shopping with Anna for shoes for her Confirmation in May - or Easter - or birthdays - so this week I'll do one thing at a time and go back to school next Monday feeling really good - don't worry, I started with a pink manicure and decorating my house for spring... it's not all to dos!

One thing I surely do want to do is to catch up my this blog of mine. I've deleted my facebook and instagram accounts... so this is it. I found that I like the reflecting I can do on the blog after the events have happened.

And I don't want to give up this space. I want to keep these memories here for the girls to be able to look back at.

So here are a few pictures that were on my phone - and it was good news - a good endoscopy!



With the best IV nurse



Gloria ... who she's known since diapers!



She woke up just fine - she's in charge now having done this so many times - even told the doctors that she wanted them to take her heart monitor "band aids" off before she woke up.



Grateful for good nurses, doctors, and good results... and one day a cure.

Have You Ever Cried Over Whipped Cream?

If you've ever been on the blog before you know that Abigail has EoE - and because of EoE she is allergic to many foods.

Dairy is one of them.

So in all of her eleven years that sweet girl has never had whipped cream ever. Ever. Sure, I've tried so darn hard to make whipped cream out of coconut milk from a can but it just never whipped up.

And it just wasn't what she's heard for all these years. You know, the sound of whipped cream in a can. She's heard it, seen in, and never had it.

Until last night.



I'm not quite sure other people know how amazing a moment like this can be so I thought I'd share it. Not being able to eat something that -well, everyone- has is quite a happy moment. There are lots of happy moments in my life - some others would think are no big deal - that's why I'm grateful for this blog to truly see the joy in each day.

Worry Time... Mindfulness from an Eleven Year Old

Well hello there! I am so behind on things I want to capture. I had a second and decided to clean up the photos and videos on my phone. There is so much in there...like a just before the first day classroom tour, little snippets of Anna playing the viola, and then there's this!

Abigail had started middle school and this was back in very early September. Scott had taken her to her Dr. Jerson appointment (back here) and she came home so so so happy about all that she learned. I wanted to capture her joy... and I did! She learned about 'worry time' and I think it's brilliant!

I'll let her explain:



God is so so good - bringing people into our lives when when we need it. Dealing with EoE for all these years and we 'just found' this doctor to help her manage her daily pain. I can say that it was just the right time. You can tell she is so ready to receive all that is given to her. And all I can say is "His strength is perfect."

Slaying the Dragon

Abigail has been going to therapy. We started in the spring. She goes to a psychiatrist who has their PhD in children dealing with chronic pain. (Chronic pain is when pain is on going) He is amazing. He is teaching her that she can manage her pain just like she manages the digestive disease, Eosonophilic Esophogitis through 'tools'. He is giving her a different 'tool' for her toolbox each time we see him.

After we got back home the second time I thought that it would be a good idea to start a binder filled with the handouts he gives us and the notes that Abigail takes during the session.



One afternoon I found her sitting at the kitchen table coloring a picture.

(do you see Noel, the bird in the foreground?) 


When I asked her what it was she explained that she wanted to get on paper what she got out of the session that day. Here is what she drew and wrote:





We brought it to show him the next time and he asked if he could tweet it out to his fellow doctors. Of course we said yes. Later that night, he email me that Abigail's drawing was 'liked' over 2,000 times and it was retweeted all over the world. It was picked up by and retweeted in London and also by the Pain Center in Australia.

Abigail has always been able to put her feelings on paper. She amazes doctors with how she can so clearly articulate her pain.

I have no doubt that God will turn "beauty from ashes" Isaiah 61:3 (from her disease, He will do great things, He will use it to guide her life, to help others, to bless us) and I believe and know that He will "finish what He started" Phillippians 1:6

Abigail practices her breathing each day and her relaxation. She is keeping a list of every time she has a garbage thought and how she turned it into a comfort thought.



She is taking charge of pain and living her life in such a powerful way. We are grateful for kind, and brilliant doctors that lead the way, and we are grateful for this brave, amazing daughter of ours, whom we love with all our hearts.

Science Fair

Abigail started talking about the Science Fair as soon as the school year started this year, and her daddy said he would do it with her.

She chose to do some 'real' science and focused on Eosinophilic Esophogitis. In a simple nutshell, there is {as of now} no cure for this disease. And there has been no medicine found/made that is specifically for this disease. The best way to manage EoE is food avoidance {foods a person is allergic to}. But in some rare cases {Abigail}, even after years of "elimination diet" of taking her off foods and reintroducing them one at time, we still haven't found the foods she's for sure allergic to. {it's complicated, I know}

But doctors have found that one medicine that is meant for asthma patients {meant to be breathed in with an inhaler}, if swallowed by EoE patients with a sticky liquid can coat the esophogus and help with inflammation when eosinophils are too high.

It's not a perfect, life long solution, but it helps.

So, since she was 22 months old, Abigail has been taking 7 splenda or honey with this liquid medicine. It's mixed into a 'slurry' and then swallowed before bedtime.

Her experiment was to replicate an esophogus and use different types of sticky liquid to see what would hold the medicine on to the esophagus the best.

Here is what she found:



It's pretty clear that the splenda works to hold the medicine on the esophagus the best. And that honey doesn't work well at all.

We so proud that Abigail takes an active role in this disease and wants to help find a cure. She felt empowered through this project. And that is so amazing since many days she simply feels like a victim.



Those are the teacher judges looking over and scoring her project.





And guess what? She won!!!



Finding a way to manage a disease is purposeful science and we all learned so much from this experience!



So proud of you Abigail!

Endoscopy

When we are at the hospital for Abigail in the day surgery unit (for an endoscopy) she always seems little to me.

Maybe that's because I get to care for her in such a sweet way.  Mothering her and taking care of each need.  It's a unique situation and even though I'd rather she not have all of these hospital visits I'm so grateful for the precious time with her.

But this time looking back at the photos she seemed so much older to me.

(arrival)


(getting checked in)


(waiting)


(finding her favorite nurse) (favorite since she was 22 months old!)


(smiling through an IV)




(In the procedure room, ready and getting a bit scared, about to go to sleep. Showing her gastroenterologist a photo on her phone of her bird)


(Tubes in, parents exit)


(Recovery)


Yes, getting older.  But still little. 

10 Thoughts on a Friday (1)

one.

We had Abigail's EoE dr appointment (I talked about why we were going back here).  And he's pretty sure that the inflammation she presented in her November endoscopy has caused some other problems.  There are medical terms I can not even pronounce. We are putting her on an extreme does of meds for 4 weeks and then another biopsy/endoscopy in just 4 weeks to see if it's helping and to rule out other problems.  He has to get the inflammation down before he can deal with what is causing the pain.  It's a long journey for our girl and we are grateful for her doctor for being a leader by nationally and internationally on this gastroenterology disease.  And still praying for a cure.  There is a new gene therapy that is in the introduction phase.  It's not a cure but it could help tame this beast.  It's years and years away as it hasn't gone to clinical trial yet.  She lost weight since November and that has her doctor concerned.

two.

I packed away the girls Christmas clothes and it made me sad.  But happy that new holiday clothes are just around the corner.





three.

the number forty-five means nothing to me.  I don't care at all about my age.  At all.  I wonder if that is abnormal.  I just don't care.  I'm me.  Today.  Doing the best I can.  Enjoying my life.  Working hard at my life.  Trying to honor God with my daily life.  I'm happy.  I was happy at 5 and 8 and 13 and 23 and 31 and 45.  The number makes no difference.  If I could, just for a day, I'd go back to 8 years old.  Be playing with dolls or reading books.  Hear my mom in the kitchen cooking dinner.  Hear my father come in the front door from teaching.  Hear the silly laughter of my brothers.  Feel the warmth.  If I could just for a day I'd go back to 31 and be baby Anna's mommy and have her fall asleep in my arms.  I'd hold her all night and not care one bit how my arms might ache and how tired I'd be the next day.  If just for a day.  But 45?  I couldn't care at all.  My life is long and my life is good.



four.

The bathroom project is killing us.  Well, not literally but it's such a pain.  It's been the source of lots of tension; and I blame the bathroom stress to a few fights we've had lately.  Scott is working hard around the clock to get it done.  Right now the walls are up and he's working on sealing them.  Tiling is next!!!  I can not wait to be the first for a bath.  I'm a winter loving, tea drinking, cozy house, bath taking kind of girl.

five.

Noel has been an amazing addition to our family.  The girls adore him and he has gotten so used to being our little pet.  He comes out of his cage all of the time when we are home.  We went for training from a wonderful lady that has been working with birds for over 30 years.  She taught us how to cuddle, handle, and make Noel a part of our every day lives.  She is quite the homework buddy! And viola practice buddy.





six.

Teaching brings me such joy every day.  Now that it's January I find myself thinking "how will I ever let go of this class?"  Especially the ones that have needed so much from me.  Molding, guiding, teaching.  Being back in the classroom is often times over my head.  The observations, the testing, the rigorious curriculum of the town & state we live in but the children; they are the same.  And am their teacher.  I don't take that lightly.

seven.

Anna is in high school.  A freshman.  I'm so proud of her.  I want to remember always her work ethic.  She's in school all day.  Walks home.  Walks to the bus stop to give Abigail TLC.  She works on homework (unless she's playing viola or in orchestra) every minute (except for family dinner) until 11 at night.  I sometimes wonder about the fast track these kids are on today.  Pushing them.  But she is so smart and is learning so so much.  I couldn't be more proud of the first half of her freshman year.  It's exciting to think about the whole wide world in front of her.  It feels like everything is starting to open up now that she's in high school.

eight.

I've rearranged my schedule.  Wanted to try something new.  I used to get up at 4:30 to get my God time and my workout in before shower, dress, girls ready, breakfast cooking time.  It was a rush and I hated that rushing feeling each and every school morning.  I did it for years and years - even before going back to the classroom.  Well, my life has turned upside down and I pour so much more energy into the day in my little classroom.  And it felt like fitting both God time and my workout in the morning I wasn't giving it as much as I could.  So now I get up at 5:00 (feels like luxury to me and so late)  and I only do my God time and tea in the morning.  I work out after I tuck Abigail in bed at night.  So yes, my workout starts at 8:15 pm.  Crazy but after trying it for a couple of weeks I really really like it.  I feel better when I go to sleep.

nine.

We don't have our summer plans figured out yet.  And I'm itching to.  We always know where we are going by Christmas.  Well Christmas has come and gone and we still haven't made any big decisions.  I think that our new daily lives of my back in the classroom have kept our daily lives so so full that we just haven't had time to let our brains relax enough to see what adventure might be next for us.

ten.

My Dad is having surgery today.  I love if you would keep him and his recovery in your prayers.  This is nothing like the open heart surgery he had three years ago (back here) And I fully expect him to be running, biking, and directing middle school musicals next week.  But extra prayers would be appreciated.

Don't you think life is wonderful?  We have so much to look forward to.

Update on Abigail

No emotion. Just the facts.

Last endoscopy: November (back here)

Lately: daily, constant pain

Her: More than a trouper. She takes a deep breath and moves on. She moans when she's reading. She says "it's not fair".

Next Step: Emergency appointment with her gastroenterology on January 11th.



She hated her hat and mittens this year and saw these in a catalog. Her (many choices) were perfectly fine but I bought these for her anyway. I can't take away the pain. Doing the little things helps.