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! 

A Health Update

24 hours of not clicking that button on my phone that has a big I in the middle and I already feel different. I don't think it will change my life but I know it is right for me this lent. Click HERE if you want to read my Lenten journey. 

 Music (click HERE) 

This blog feels like an old friend. Sure I've still been blogging regularly but knowing that it the only place I'll be posting makes me remember the 'good ol days' of being here as a mama. Blogging here feels lighter, easier, less curated, just me. And that is exactly what I was led toward this lent. 

I put this song on today (see link above) and it made me want to do an update post on Abigail. 

I know she reads here. So I don't want to be too too sappy or sad. Just an update.

Dinner tonight was a vegetable soup. She'll eat anything. She had Jazz Dancers for Pop 'n Jazz 7 pm to 8:45 so I knew I had to get her out the door quickly. But it's hard for her to eat quickly. She just can't. Just this Monday we were at Radiology at the children's hospital for her.

I filled her water bottle as she was getting ready to head out the door. Handed her her first pill and then another. 

Most of the time I barely notice. It's been 14 years of this. 

But tonight I did. 

Pills after dinner. A shot before bed. A brace to sleep in all night. 

Please pray for my little girl. None of these things: her diagnosis of Eosinophilic Esophagus, growth hormone deficiency, her scoliosis are life threatening. But they are life altering. 

It has become increasingly difficult for Abigail to swallow. This Monday found that her esophagus is indeed narrowed and there are some irregularities in the wall. I'm not sure what the doctor will do about it. There is a lot of trial and error with managing a chronic illness. 

But we will wait and try and pray. 

These pictures not from that swallow test on Monday but from a few weeks ago - an endoscopy. 

And with that update, off I go... a bunch of things to do tonight before I go to bed... 

Thoughts and a Health Update

Refugee by Malcolm Guite

"We think of him as safe beneath the steeple,
Or cozy in a crib beside the font,
But he is with a million displaced people
On the long road of weariness and want.
For even as we sing our final carol
His family is up and on that road,
Fleeing the wrath of someone else's quarrel,
Glancing behind and shouldering their load"

The Christmas scenes we have in our homes, our churches, our books are always peaceful, easy, tranquil. Our homes are a cascade of cozy Christmas images, glittery frosted cards and happy, holy families.

It is so easy to loose track of the truth. Or perhaps we don't even want to think about the rest of the scene or story.

But that is not the story. There is a hope and love that doesn't go away even as our decorations get saved for another year.

Is there something in your heart that the magic of Christmas didn't take away? A loneliness, the ache of missing a loved one, a new diagnosis, worry, physical pain, fear? I think it's possible to hope that Christmas will rescue us from any of that. But glitter, soft candle glow, twinkle lights, and yes, even Christmas sugar cookies won't change a thing. It is a surrender that will. A knowing that we can rest in his love that will never let us go and trust; simply trust.

Today I took Abigail to an orthopedic surgeon with an expertise in spine deformities. She was referred from her endocrinologist. (see sees an endocrinologist for low growth hormone and growth therapy - she receives an injection of growth hormone each night from us at home and is monitored by her endocrinologist) (that is a whole post I actually haven't done yet) Last month she noticed something in her exam. 

After an exam and x-rays he diagnosed her with a scoliosis and told us the treatment would be wearing a brace for three years each night when she sleeps to help correct the curvature of her spine. 

I know it is not life threatening. 

I also know there is no cure. 

Abigail is strong - but we are tired of her having to be strong. 

She deals daily with too much already: 

1. a digestive disease called eosinophilic esophagitis and a whole host of things that go along with this 

2. ADHD and perfectionism and anxiety all rolled up together 

3. allergies and anaphylactic to dairy 

4. low growth hormone - she will receive an injection of growth hormone until she stops growing 

and now this. 

But we trust. And we know that His plan, although not what I would order for my daughter is in His hands. So we can rest in that. 

So if your Christmas didn't take away the worry, the pain, the anxiety, the ache, the loneliness know that the story is not over. If you know any 'weariness and want,' the healing is not in the Christmas glow; it is in Him. Hold only on to Him. 

Photo Description: The stocking is filled to the brim on Christmas morning. A white box and red ribbon peeks out beneath the mantle greens and lights. Old letters spell out Christmastime Is Here on the hearth. Indeed it is.