Improvements

Sunday, March 24
Home safe in sunny coooolllld Utah and making a special birthday cake, for our new 10 year old who can't stop riding his new bike!

Monday, March 25
I don't want to jinx this by saying it out loud, but I am having the BEST most productive Monday-after-crazylong-travel-day evaaah!! Best feeling. Audrey is doing so much better, and the house was only lightly destroyed last weekend! Lots checked off already today, and baby napping, toddler happy with his cartoons for a bit while I get bills paid. Going to sleep well tonight! 
To top it off today was my dad's birthday, and we finally got to call him at 10pm to sing to him, today was so busy but it all worked out in the end!

A Day in the Hospital, A Day of Remembrance

Fantastic news! Audrey's esophagus has stayed open these past three weeks since her last dilation, to a whopping ten millimeters! Dr M showed me photos of where he cut into the wall of her stricture today on the opposite side as last time, and how beautifully it had all healed from three weeks ago. After cutting with the needle knife, he then easily dilated her to the "dream" diameter of fifteen millimeters! That is not much less than a normal child her age! We think that the swallowed Flovent medication may be the key to this success. There was nothing unusual down in her stomach or esophagus, and we think it is probably simply a virus she has been dealing with, in all the recent reflux and sleepless nights. They suctioned a lot of gunk out of her upper airway. We will stay tonight at the hospital and travel home on Sunday, then come back as planned for the next one on April 12th, and after that he is thinking to space it out further between procedures. Thank you for your prayers and support! This has been a day filled with blessings.  Our room is next door to the wonderful Amish family who have lived in the hospital for two years with their baby who has both EA and Down Syndrome; they have been some of our best friends throughout this adventure and she lent me needles and thread to repair my purse while Audrey is resting today.  I have run into many staff members here at the hospital who were excited to see us and wanted to catch up, and actually to be honest, I have felt like Grandma C. is here with me as well.

Flovent is a corticosteroid often used for asthma, it is an inhaler, but instead Dr. Manfredi is using it to be swallowed. I spray it into her mouth and she swallows her own spit with the medication, and it coats her esophagus. We had been using it back in December when she stayed open for a month, and then I stopped using it in January and she closed down again. We started using it again and she has stayed open again. We strongly suspect the Flovent is a big part of the reason. 

This morning my family in Oregon will gather to honor to honor the life of my beloved maternal grandmother. I am in a hospital in Boston with my daughter where she is recovering from surgery and pneumonia. Not being in Oregon today really stinks, and although everyone has been so kind about this frustrating necessity, I needed to contribute something to honor her memory. Thank you to my friends in Utah for helping me earlier this week to put together recordings of my singing some music in her memory. I needed to write something too. Grandma, please forgive me for all those thank you notes that I meant to write that never got sent over the years, and accept the following words as an imperfect expression of my deep gratitude for all you've given me.

I have so many happy memories of Grandma C. When I was growing up, we lived so close by that our family was able to visit with them very often. She has always been a very big part of my life. After I moved away from home and married, we had to learn to be content with telephone calls and cards in place of the frequent visits we both loved.

Some people are too young to remember the days when long distance telephone calls cost a quarter per minute or more. Although those times are long past, whenever we'd call her on the telephone, after we'd talked for a while we always knew it was time to close the conversation when she'd say "Well, this is costing you a bundle..."

She and Grandpa prayed for each family member by name every night. This was no small feat, especially when you consider that those names included some linguistic acrobatics with the combinations of "James, Jorden, JJ, Jim, Justin, and Julia, then Aaron, Aiden, Gideon, Eden, Audrey, Barbra and Bob, Pam and Tammie, Ron and Ranee, Susie and Sharon, and last but not least, baby Luke."

Grandma and Grandpa have always been very supportive of our life events, and attended countless sport games, artistic performances and academic events. Although travelling became difficult in recent years, she also attended as much as she could the events in the great grandchildren's lives over the past 20 years after we all had moved to other states, travelling multiple times to Utah, California, Arizona and the great state of Seattle.

When Bobby and I were little, we were always very excited to get to stay overnight at Grandma's house. She or Grandpa always took us to the grocery store and let us choose whatever sugary breakfast cereal we wanted; I distinctly remember Cookie Crisp being our favorite breakfast of champions. In the morning when we woke, like magic we would find a banana waiting for us on the shelf at the head of the bed, to enjoy while we watched morning cartoons before breakfast.

When I was about six years old, my beloved teddy bear finally lost his little pasted-on felt mouth, and during one visit I asked Grandma to help me make him a new one. She lovingly worked for a long time before showing me her hard work on a carefully embroidered V-shaped mouth in red thread. But in my young mind I had a very fixed idea of what that mouth should look like, and when I explained that all I really wanted was a certain shape cut out of felt and glued onto Teddy's face, she took it like a champ and bit back her frustration, took out those stitches and humored her stubborn little granddaughter. Ohhhhh, Grandma. Thank you for that.

She showed me how to make a snapdragon blossom talk by squeezing its cheeks. "Bum, ba bum bum bumm..."

She and Grandpa let us graze on the juicy sugar snap peas and sun-warmed raspberries in their large beautiful garden. I still remember that every time I eat raspberries and pea pods.

She showed me how to take meticulous care of a home. That's a skill I'm still working on.

She used to say "You'd better not pout, or a little birdie is going to come perch on your lip." I remember when we really worried that might actually happen.

She taught me to finish what's on my plate, and never waste food. She taught me to "eat it up, use it all, wear it out, and make it do". She taught us that for a long healthy life, we ought to eat less salt and fat, and that a good book and a hot cup of tea go great together.

Grandma and I are both worriers. She helped me, and I tried to help her, remember to, as they say, "let go and let God."

She patiently counseled me through broken hearts and the uncertainties and pride of my teenage years. She always reminded me that the Lord knew what he was doing, and that if things didn't work out the way I had planned, he had a better plan waiting for me. She always taught me to put my trust in Him, and to let him guide my life. She always encouraged and supported my personal walk with God.

She sent cards for each of us and our children on every single birthday, AND on virtually every holiday in between--- Valentine's, Easter, Halloween, Thanksgiving, Christmas, St Patrick's Day, Arbor Day.... ok not really Arbor Day, but at other times just because. All of her cards had a few loving words scrawled in her beautiful, neat cursive handwriting. She telephoned on our birthdays and each of the children's. I grew to look forward so much to those frequent reminders of her constant and enduring deep love for our family. Recently I visited her home and saw her big boxes full of blank cards sitting on the desk, and it made me smile. I hope some day I can be half that successful at remembering the birthdays of all my descendents.

Grandma and Grandpa kept a beautiful lush green yard at their home in Vancouver, Washington. She and I took many walks through her yard and enjoyed their beautiful flowers and airy back porch. I loved our walks together. I love that now she can walk with me whenever I need her most, just as I felt her beside me during my baby's surgery on Friday.

The morning that Grandma passed away, I was listening to some beautiful music and the following words seemed a fitting summary of the things she taught me:

"Consider the lilies of the field, how they grow, how they grow.
Consider the birds in the sky, how they fly, how they fly.
He clothes the lilies of the field, he feeds the lambs of his fold,
And he will heal those who trust him, and make their hearts as gold."

Thank you Grandma, for your example of trusting the Lord and always putting him first. I am so happy for you to be healed from pain and worry, happy that you are now free to let your heart of gold shine brighter than ever, and to travel to our sides to continue to support us with your love and encouragement. We will see each other again some day, and until then, you will continue to be a part of everything I do.

love, Susie 

Back in Boston, March 21

Back in Boston for an EGD, dilation, and Dr Manfredi plans to cut into her scar quite a bit from the inside with that needle knife, injections probably also. They plan to keep her in the hospital overnight. I haven't wanted to upset anyone but she has been doing very badly the past ten or so days, we don't know why but she can't tolerate her formula, plus has terrible reflux and coughing at night. Pediatrician says bronchitis (he said no fluid in the lungs just inflamed airways), I hope that's truly the only problem but there are a lot of scarier possibilities. It is my son's birthday Sunday and I hope we get to fly home as planned!

Audrey has been tired and sleeping a lot but has also had little bursts of "sunshine" where her happy personality shines through, it gets us through and keeps our own spirits up! Tonight we had fun browsing in the shops in old Boston and she charmed one family so much that we made some new friends!  My purse broke and exploded all over the ground, and one lady helped me quickly pick up the contents.  Then, after chatting for a few minutes with the family we made friends with while eating at the tables, I laughingly told them about my purse mishap and a lady got excited and handed me a nice canvas bag she had just bought!  I protested, but she said she would just go buy herself another one!  It was sooo nice of her!!!  We have since then used that bag as a carryon for all of our travels! 

One of our favorite just-off-the-plane adventures:  A quick stop at the New England Aquarium so Audrey could say hi to some friends.

So far Audrey is sleeping well tonight on only Pedialyte in preparation for surgery. It is a really big relief to see her resting peacefully after so many terrible nights of gagging and refluxing on her formula.  I am looking forward to catching up on some sleep, but hate to miss the opportunity to write some thoughts about my grandmother to send for the family in preparation for her memorial service Saturday. These quiet hours are very rare for me! I will try to do it from the hospital tomorrow, it is my only chance.

I feel badly for coming across so "down", we are actually doing pretty great! It was a relatively easy day of travel. She slept most of the way to Boston, and was never very fussy during the flight which was awesome!She was connected to her pump during the flight but I didn't realize Justin had turned it off! So she was fasting until the last hour or so of the flight, and it helped her rest after her rough night. Something is up with her digestion, it's really weird, and yet her diapers are normal, not that you wanted to know that haha!! Hopefully the pediatrician was right and this is just a cold working its way through her system, it's just that it doesn't act like a cold, no runny nose for example. I just want to know that everything is ok inside the esophagus itself and also that she didn't swallow something nasty like a battery or something, you know, all those things moms find to worry about! Hahaha! At least we're here now, and I can share my concerns with the docs who can help her.

March 9

Our week in a minute: The cast is off her arm! We're almost done with this nasty headcold. House getting cleaner every day. Healthy food is in the house again. Mountain of paperwork and bills done, oldest is signed up for Jr High and next set of flights 90% arranged. Last night Audrey ate an entire, respectably toddler-sized dinner of stove top stuffing and tiny bits of rotisserie chicken, woo hoo!! The boys' wild hair was cut within hours of my first homecoming on February 18th--and oh the pile of hair! It was so funny, I snapped a photo.

Ewwwww!!  I think a Tribble exploded on my bathroom floor.

 My mouth is still sore from the grueling four-hour dentist trip Tuesday and kids are still grumbling about having to actually do their homework and chores and clean up after themselves all the time. 

This mom is BACK. And life is definitely getting better.

Audrey eating her first Costco hot dog!  Hot dogs are one of the most infamous foods for EA kids to get stuck in a tight esophagus.  Eating a hot dog successfully for the first time is pretty much a life event.

Next Boston weekend is 3/21-24; I will be sliding into home on my son's birthday.

Back in Boston, March 1

On February 28 we flew into Boston for our first boomerang trip-- out n' back, out n' back -- since first returning to our home in Utah on February 18th, having been in Massachusetts continuously since August.  We had a beautiful flight over Boston Harbor coming down into Logan International Airport, and it was early enough in the day that Audrey and I decided to explore a bit.  I wanted to do something we had never done before, so we visited the restaurant Durgin Park at Quincy Market.  Here Audrey is happily munching cheerios while we wait for her french fries. We had first been curious about this place from a page in her little board book, "Hello, Boston!"  Our food was not amazing, but the staff was charming and wonderfully kind and helpful, even carrying our stroller up the stairs (many of the old restaurants in Boston are very difficult to get into with a stroller or wheelchair). Audrey and I had a fine time until her french fries got stuck in her stricture and came back up.  Then she decided she was done for the day and became very fussy.  The staff at the restaurant were super nice about her eating issue and the mess she'd made; I'd been hoping the fries would be ok to give her, but I hadn't known that her stricture was already down to 6mm, just a tad narrower than a french fry, and Audrey is not yet a very patient chewer.  The waiter wrapped up the rest of our leftovers and very nicely helped me carry the stroller down the stairs.   Audrey was exhausted, so I took her home and tucked her in bed.

Friday Morning, March 1st:
At the surgical waiting room. It's a beautiful spring-like morning in Boston that reads a bit like one of those "fortunately, unfortunately" stories. We walked partway to the bus stop then hurried back home to retrieve the almost-forgotten-but-absolutely-essential piece of pink software, aka blankie. Then we took a bumpy bus ride for twenty minutes, walked another ten minutes during which our stroller wheels caught hard on some uneven pavement and tipped completely up over end. She was buckled in and wearing fuzzy hat and gloves, plus there's a front bar on the stroller, so the face plant she sustained could have been so much worse, but STILL. Reported it to the doctors and she checks out fine, soooo after much adventure, here we are waiting to go to OR prep.

 

 My favorite part of this photo is the way she rocked back on her heels with delight.

 We had a balloon dilation from 6mm to 10mm, and missed our ortho appt due to long delays in the operating room but it all worked out in the end. Ortho clinic worked her in last moment and she now has a removable cast for the next (final) week. Bushed but finally on the bus heading home for the night. On schedule for her next dilation to be 3wks from now as expected.