GERD :: A long, happy update

As many who read this blog know already, Annabelle was born with Gastroesophageal reflux disease (GERD) and the last four years and ten months have been one long research project into the whys, whats, and hows of helping her. I know more about antacids, proton pump inhibitors, H2 blockers, hiatal hernias, indigestion, food allergies, IgEs, and antigens than I ever thought I would know for as long as I live.

Annabelle was on Prevacid for over two years to control her GERD symptoms. It was a constant dilemma, knowing that we were medicating the symptoms and not solving the problem. Once she was old enough to talk to us and communicate how she was feeling the world began to open up. We attempted to cycle her off the medication several times to try more natural (and neutral) remedies that could allow her liver and kidneys to heal from being overworked for so long. Every try was ridiculously difficult, weeks of no sleeping, extremely painful heartburn, and sometimes vomiting.

Prevacid (a PPI) reduces the acid in the stomach so that no acid comes in contact with the esophagus. With an esophagus that does not close, like Annabelle's, the acid would simply erode the opening, scar it, and cause all sorts of other very painful problems. But the reduction of your stomach acid causes the lining of the stomach and intestines to gradually go away. And without that lining the body cannot absorb nutrients from food. Holes appear in the intestines and food allergies abound. It is a double edged sword.

Knowing that malabsorption was a possibility, we had Annabelle checked a year and a half ago. The results shocked us and without any backup plan we immediate took her off her medication without slowly cycling her down. It was a miserable week.

By our wonderful doctor in Oregon we discovered the wonders of flax seed. When heated, flax releases a glutinous liquid that mimics the lining of our stomachs. In fact, it mimics it so well that it binds to the inside of our stomachs and intestines upon ingestion. It is safe and easy to make. This remedy was a miracle for us and we gave it to Annabelle twice daily - sometimes more if she was having a hard time. And we tried it occasionally too, always with excellent results.

Flax Recipe
use for any heartburn, upset stomach, indigestion, or aches

1/2 C water
2T flax seed (dark seeds work better)

Bring to a boil and immediately strain off the seed. Sweeten with your favorite sweetener. Drink warm or cool, even sip a little bit and save the rest for later on the counter.

Last fall we took Annabelle off all wheat products. The results were remarkable and she was healthier than ever. Her reflux was still an issue, just not as severe as before. But we had kept one product - a favorite sprouted grain bread. By using sprouted grains the bread is presumably "safe" because it is harvested and ground into flour before developing the proteins that cause allergic reactions.

Even off wheat, Annabelle's primary symptom of her acid reflux is a cough. This is common in children and has been a dependable clue for food eliminations. As you might expect, her cough is more prevalent at night when she is laying down and refluxes more easily.

So, two weeks ago we swapped out her regular bread for another. She liked it and seemed to be sleeping better. Then, a couple days ago neither Dave nor I could remember the last time we gave her some flax. It had been at least a week.

It has been slow dawning on me... Annabelle is OFF her medication completely, without symptoms! She has slept through the night for over a week! The cough is more rare. The tummy aches are far fewer.

A miracle has happened here.

I don't know if I can possibly relay what it is like to have your sleep interrupted every night for almost five years. Or the worry that can consume you when you see that your child is having an obvious allergic reaction or refluxing painfully and you cannot think of what food might have possibly caused it. Or the guilt of knowing that a medication your doctor gave you during your pregnancy is now thought to cause childhood GERD in the first place.

Today I walked around smiling inside at the strong confirmations of Annabelle's healing. I cannot yet conceive of this being a permanent thing... there is still so much to assimilate. But my heart bursts with gratitude for this milestone! I can begin to confront the part of me that believed she would be medicated for her entire life.

But the afternoon was not without some irony. Annabelle's teacher approached me about her snack today because it was not appropriate for kindergarten: corn chips and homemade guacamole. This is what Annabelle ate while everyone else enjoyed their kindergarten soup. The other children apparently spoke out, wanting to know why they were not allowed to have chips and dip.

I smiled and thanked the teacher. But it rattled me. For her entire life Annabelle has known nothing but DENIAL of food. There have been too few treats, too many yucky dinners, too many times of watching other children getting to eat something really yummy while she gets some thankless deceptive wheat-oil-dairy-nut free replacement. How many festivals have the other children celebrated with cookies and cake and muffins? How many rolls from weekly kindergarten bread-days are off limits? How many birthdays have featured something she couldn't have? How many aftercare snacks? How many class potlucks? How many shared lunches on play dates? How many bowls of soup on soup day? ALL OF THEM.

Countless sheets of cookies, pans of muffins and dishes of pies have been thrown in the garbage as failed attempts to make something that actually tasted good. Attempts to combine ingredients in yet another way that would make look like what everyone else was having so that she wouldn't be able to know the difference.

And for the first time Annabelle got to eat something the other children wanted? It is all I can do not to send her with chips and guacamole every single day! Because there is another irony here: Annabelle would just die to be able to have the soup she makes every week with the other children! As Dave said, "Have all the other children eat Annabelle's diet for just one week and then we'll talk about chips and dip."

Without being too awake to it, Annabelle knows sacrifice. So I chafe when another parent comments, "Oh I never give my child juice, it's way too sugary." All I can do was lean in to Annabelle and say, "Drink up! You want some more?" Because chances are that other child gets cake for their birthday, or ice cream at parties, or pizza on Fridays, or donuts with their dad on Sunday mornings. And I will not be made to feel bad for giving my daughter organic apple juice any time of day.

The other day Annabelle saw the leftover hard candies that I had given out to the children in my class for valentines day and asked for one. I nodded and her eyes grew wide and she snatched one and ran away to the playground. But what I really wanted was to take all of them and fill her pockets, to give her the joy of being a child with bunch of candy. I know she would share them. I know it would be a magical moment. It would be, in some way, a win for her.

I look forward to the day when we can have waffles and ice cream for breakfast on a special Saturday morning. I don't know if it will ever happen. I just don't know. But I hope.

For now I just say a special prayer of thanks and enjoy my healthy girl.

Playing pretend

A couple weeks ago Annabelle convinced me to buy her a pack of headbands. I was reluctant because I didn't want to waste the money nor the plastic. But she has proved my skepticism wrong by wearing one regularly to school, another one while she reads, another while she sits in her car seat, and another is used to guard her water bottle at night.

The other day Annabelle was skipping around the couch over and over, then she warned me, "Momma, I'm just going to play pretend." And she got right down to it.


Annabelle :: Seven! One! Four! Seven! Two! Four! Four! Seven! Seven! Eight!

Me :: (Stunned to realize she knows my cell phone number, though I did edit it here...)

Annabelle :: Come girls! It's ballerina class now! ALL NIGHT ALL DAY! ALL DAY!

Annabelle :: Momma, would you please sing that song?

Me :: (singing)

Annabelle :: All right girls! Headbands OFF! MAKE YOUR HAIR FLUFFY!

Annabelle :: Kids! Uhoh! Why did your mom not make you wear a headband? You did not know it was ballerina day? Wellllll... it IS ballerina day and you need to have your headband. See my headband?


Those kids made a seriously fun time come to a very fast end. Silly pretend kids, such party poopers. She ran into the bathroom and playing pretend time was over.

Home space

This week has been a whirlwind of decompressing, unpacking, conferencing, and preparing. A big part of the week was about getting ready for my three day conference about 90 minutes away. I wanted to have finished unpacking and moving Annabelle into her own little spaces in the house as much as possible before I left.

The day before the conference we were very busy together: moving furniture around, cleaning, cooking a few days worth of food for Dave and Annabelle to eat while I was gone, and hanging pictures. (I purged an entire car load of garage sale items too!) But the most important was working to convert our fireplace into a play area for Annabelle.

Our town has very strict burn laws that renders our fireplace unusable for 350 days a year. So I screwed together some plywood, covered it in batting and used a staple gun to upholster a little wall to cover the firebox and create a space for her kitchen/house activities. The wall is strong enough to support a couple little hooks and small shelves that I attached for her brooms and housewares. I hung a silk from the ceiling to hold the space of the area above.

There were a few long noisy stretches of working and the pace of the day was very fast. The drill was loud, I was loud, music was playing, and the overall mood was "Get the job done!"


Annabelle :: I wish I was back in your tummy, like when I was zero.

(Zero is the age Annabelle applies to any infant younger than one.)

Me :: You do? Why?

Annabelle :: Because when I was in there it was peaceful!


It works well! We need to find a darker rug, but for now the softer colors will work. When I asked Annabelle to pose in her new kitchen play area so that I could take a picture, she ran to her room to first change her clothes. Then she climbed up on the table and "posed".


The walls in Annabelle's bedroom have a tendency to be chilly, so I sewed a curtain to frame her headboard and placed another padded board alongside her bed. In recent weeks she has asked me to push her bed against the wall because she evidently has anxiety about falling out of bed, even though that has only happened three times in her whole life. She loves this arrangement and curls up in the top corner of her bed for most of the night.


This picture is among the more unusual on my blog, just for the sake that it is an imperfect snapshot of normal life. Annabelle is so small to me here, sleeping in Aunt Kate's childhood bed, covered with a seersucker spread from Oma that I dyed a coral color and a quilt I sewed for her in the last weeks of my pregnancy. The open wall space so evident in the picture is actually a tiny amount compared to the reality of entirely empty walls... but art will come for the walls soon enough. In the meantime the space invites her and she feels the confidence of knowing it is her corner of the world.

It is beginning to feel like home.

Rare :: fun in the shower