Treatment History

I had a bit of silly fun at Audrey's ortho appt on Monday while filling out dry forms. She needs a cast for two more weeks, but this doctor said she can go swimming in the new waterproof one, so it feels like summer is finally here now!

Dr Manfredi's Report

At her dilation in Boston, Dr Manfredi said he was very pleased; she had stayed open to 9 mm after about a month since her last dilation (when she'd been dilated to 12mm). He did not do any cutting this time, and dilated her to 15mm, our "ultimate" dream diameter, for only the second time ever. He also injected some steroids into the stricture. He said to have her done in Utah in four to six weeks, and he will see her a few weeks after that. He is also considering reducing her medication dose, so tons of good news this time. Unfortunately she also came down with a cold that day, something that seemed to make her throat hurt more than usual and caused extra reflux. She has been refusing food and drink by mouth almost all weekend, including today, but tonight she ate some pizza during a visit with cousins. To my terror she stuffed an entire piece of pepperoni in her mouth and quickly swallowed it after barely chewing, and THEN to my shock it went all the way down and stayed there.  I shook my head when Dr Manfredi first told me the good news, and said "This is a brave new world."  It really feels like a fantasy and I've been afraid to jinx it or get too attached to things being this way, but for the moment (except for her sore throat from her cold) she seems to be wide open and capable of near normal eating.  Happy Independence Day, indeed!

I am planting flowers and sprucing up the patio for our exciting visitors for the Fourth of July celebration!!! Feels like Christmas to me! My mom and dad, plus Grandpa C AND Grandma S are all coming from Oregon to play with us for the holiday.  And I am so excited to do our family traditions together with them! Homemade ice cream, corn on the cob, watermelon, flag cake, barbeque, lawn darts, fireworks, hot air balloons, parade....  Audrey said it best in her little voice as she opened her eyes yesterday morning straight out of bed, "Want see grammas!!"

Boston Dilation June 28

 Waiting for surgery. Audrey says hi!

An hour after this photo was taken, she was under the influence of Versed (which apart from the amnesiac effect also makes her silly, well sillier than usual) and I showed her this photo on my phone and said, who's that? She stared wide-eyed at the photo and protested, "MY blankie!!" As though it was someone else in the picture, with her yellow cast and blanket. I actually think she was deliberately making a joke.

A couple of weeks ago, when we were supposed to be leaving for Boston and had to reschedule last minute with the onset of that terrible virus, I remember feeling so drained, physically, mentally and emotionally, so unready to leave my family again and head out for another procedure.  I had tried to cheer myself up by planning some side trips into the visit, but between the amount of stuff going on with the kids and my own body beginning to battle the bug, I just had the blues.  But this week, in great contrast, the night before my plane trip I lay in bed listening to the night sounds of crickets and fans blowing, catching real or imagined whiffs of campfire smoke from backyard barbeques and s'more roasts, and it seemed to me that the warmth of the summer sun had actually soaked into my soul.  And I knew I was ready.  Here are my little journal entries for this lightning quick, very dense trip.  I'll add photos asap:


June 25-26: My friend Tamara is the bomb. Thanks for picking me up at the airport, letting me crash your place, borrow your car, eat your food, spoil your kids. Me heart you muchas.  Audrey and I loved frolicking at the PEZ factory with you guys!

June 27: Dead tired after driving through crawling traffic for 6 hours, unexpectedly double the time it should have from Trumbull, Connecticut to Boston, between some fallen trees on the highway, construction and rush hour it was nutso, but it was all worth it because we had a wonderful time visiting my dear friends, the Moldenhauer family, who fed Audrey and I a lovely dinner and shared with us the latest news in their family's wait to see their son receive a kidney transplant.  Audrey, unfortunately, really struggled to swallow any of the dinner and regurgitated several times-- I am so thankful for my very patient hostess Shohreh who took it all in stride and did not let it bother her.  Although our drive to Boston was much longer than planned, it was a beautiful lush drive in the misty rain with green as far as I could see, munching my souvenir bucket of PEZ and with no ac in the borrowed car, it meant I enjoyed having the windows open the entire way, it felt GREAT like wind in my sails.... PLUS I still managed to work in a quick stop to see the famous Walden Pond, which was gorgeous between evening rainshowers, not to mention my incredibly sweet Little Miss endured the long hours in the car beautifully, she's been handling our crazy travel schedule with truly amazing grace, especially for a two year old! Now we've reached our home away from home in Jamaica Plain for the night (THANK YOU Patty!), got Audrey's bed and pump set up for the night, it's 11pm and we report to the hospital at 9am, surgery is at 11am, I'm exhausted and I want to sleep but I also reeeeeally want to watch just onnnne episode of Dr Who.   Better be good, big day tomorrow... But but but! Sigh. The battles I have with my inner teenager. Good night!

June 28: After Audrey's surgery, she and I had a wonderful dinner with Beth C.'s awesome family and the LDS missionaries tonight, and then the sweetest conversation with Anna E. tonight before bedtime. Thank you for all of your generosity and for encouraging me in my life dreams, feeling very humbled and blessed tonight.

June 29: Sadly sweet baby girl slept very poorly, and me likewise in consequence, due to a lot of reflux and discomfort from surgery and perhaps an oncoming cold.  After a delicious breakfast from our sweet friend Anna E., Audrey and I packed up and drove to the lovely street where we lived for those happy, crazy, sad, wonderful and densely busy months last winter. It was an immense joy to see our sweet neighbors there, and I picked up a few things that one of them had very kindly stored for me until I could return for them.  After our visit, we drove the country roads near the house and I took some photographs of a few of my favorite spots.  Then we drove on to Newport (of course.  I was well dubbed "Newport Ahab" by my husband last winter, when I avidly sought every opportunity to learn and see something else at the Newport Historical Society properties) to see some things that had been closed during the months we were there before.  To my delight, the weather cooperated and we were able to see the Green Animal Topiary Gardens, Hunter House, the gardens at The Elms and The Breakers where the fountains were filled with water and running merrily.  We stopped at my favorite chocolate shop for gifts and treats, and then drove a glorious green highway on our way back to Trumbull and the home of my friend Tamara.  In the morning it's back to Utah.

Mischief managed.

































An hour after this photo was taken, she was under the influence of Versed (which apart from the desired amnesiac effect also makes her silly, well sillier than usual) and I showed her this photo on my phone and said, who's that? She stared at the photo and said in amazement, "MY blankie!!". As though it was someone else in the picture, with her yellow cast and blanket. I actually think she was deliberately making a joke.

Survival of the Piratest

This morning, I was paying a mountain of depressing medical bills and 8-year-old Aaron brought me his pirate-themed fortune telling toy, (you know like those old 8-balls?) and he told me to ask it a question, So I said, man, will we ever survive this? and the toy answered, "No Way! Arrrrrgh!!"

A Long Walk Before Nap Time

Today we had a morning appointment at home with the Early Intervention PT and Dietition. (We are working on improving on Audrey's swallowing disfunction, because she probably aspirates a little when she swallows and isn't eating or drinking enough to reduce her G-tube feeds like we've been hoping.  She is officially underweight so we will be working on pushing the cheese and high protein snacks.)  I waved good bye to them, grabbed the mail at our box and told Audrey "It's blankie time!" And suddenly that funny girl started walking away from me as fast as her little legs could go! She did not STOP until we had walked a quarter mile around the neighborhood! In bare feet! Funniest walk ever. I just walked patiently behind her since trying to carry her unwillingly was a joke. Every time she started to slow down I'd repeat, "Audrey, it's blankie time." And she'd speed up those tiny legs!! My life is really fun. An uncommon flavor of fun perhaps, but way, way fun.

Perhaps she figures that after so much time spent in the hospital and doctor's offices, the day is too short to waste napping.  I think that's why I just couldn't be impatient with it, and just followed her on her little adventure instead.  Carpe Diem, Audrey girl!

Re-casting in a Sunnier Hue

Rats. Double break near wrist. At least it's aligned already. 4 weeks in a cast, the doctor estimates.

JUNE 20: Woke up today, made breakfast and took Eden to the ortho for her follow-up. Audrey came for fun and I narrowly prevented her from falling off the high exam bed while Eden was in getting xrayed and I was thinking how ironic that would be, to have Audrey break a bone in their office. In two weeks Eden gets to lose the cast at last and wear a removable splint for two final weeks, making eight total of her arm in a restraint. Came home, made lunch, and had an appointment for Audrey with her Early intervention therapist. Put her down for nap, started her feeding pump, started Eden on her chores which meant first cleaning their bedroom. Audrey wanted to get out of bed to check out what big sister was doing, and for the first time ever, she did get out of bed, all on her own, face planting onto the floor from the wall of her crib. G tube ripped out of her belly, glorious fun. Sister and Mama comfort, re insert tube, good as new, back to bed. Two hours later, Audrey's up from nap and sweaty and crying "owie" and favoring her wrist. Then as she wakes up fully and gets some good story time in with me and her big brothers, she perks up and starts acting fine, using that hand and even putting weight on it, though every now and then she suddenly looks at me with a serious expression and holds up her wrist for a kiss. After discussing with Justin whether to take her in we decide to go forward with or planned picnic dinner at the BYU Belltower Carillon concert. We have a little nice family time and I decide I'll take her to urgent care as soon as we get home, since they can x-ray it there. I grab my purse and go to move her to the car and she arches her back when I try to put her in her car seat because she doesn't want to leave daddy. Suddenly Justin is saying to take her into the ortho tomorrow because if it is broken the Urgent Care will just tell me to take her to the ortho tomorrow anyway, so since I'm tired and they're both fighting me I give up. It's now 8:40. 10 minutes later Justin changes his mind and decides to take her in himself, but he gets there two minutes after they close. Meanwhile I take the kids who want to and go spend a wonderful thirty minutes with some friends around the corner, their daughter Kelsey I've had the great privilege of watching grow up here since she was Eden's age, and tonight we watched her open her mission call! It was an emotional time of all the good kinds. I'm going to Boston next week for Audrey's next surgery, tomorrow I'll have to have her wrist looked at, and Friday is an important appointment with her dietition. But what I really want to do is go on strike from medical drama, it's been summer for three weeks and we've done nothing but uber fun medical drama, I just want to say enough is enough, for a while at least I don't want to see any more doctors! Except the one I just met for the first time this week. The one with the trench coat and Tardis. Him I need to see much much more.

Cast Twins! Two girls, five months, three broken arms, all on the left side. What are the chances? Life at our house is just tooooo much fun! Eden gets her cast cut off today and will wear a brace for a couple more weeks, and the two girls should get their arms free the same week mid July.

 

Playing with brother just after she came home from getting her cast.  Her endurance for this medical stuff is pretty amazing.  She takes it all in stride, and then hurries back to playing.

 

Cute moment playing with her brother Aaron: Audrey spoke her most complicated sentence yet, holding up her arm, "Aaron kiss my yellow cast."

 She is so proud of her yellow cast. 
And if all goes according to schedule, both girls could get their casts off the same week, how totally crazy is that?? We had a s'mores campfire tonight and at dusk I was joking with Justin about one perk of the situation--at least it will be easy to find the baby, her yellow cast almost glows in the dark!!

 And last but not least, this day would not be complete without telling

 The Miracle of the Stairwell  

 (swelling music)
Seriously??? I feel like a one note Nellie, singing the same song day after day!! But now you really will not believe what just happened! You know how people say three times the charm??? This was the third broken bone for the girls in under six months, but right after I got home from getting Audrey's cast, unbelievably Eden managed to trip just wrong and fell 10 feet down our root cellar stairwell. Impossibly, she landed evenly on her feet, and was fine. We were both stunned and shaking, I held her for a couple minutes and we both just cried and hugged with gratitude. 
This is the stairwell Eden managed to fall into.  Right after we returned from getting Audrey's cast on, Eden was walking towards the kitchen window, tripped just wrong and fell over that wall. I just knew I was going to find her in a bloody heap at the bottom, but unbelievably she had landed perfectly and was fine. Pretty shaken up but fine. This is my same girl that broke her arm just falling off a chair, go figure!

June 17 -- Tuckered Girl

I laughed when I came in to hook up her feeding pump and saw her lying passed out like this. So often I have to be Elastigirl in order to reach her Gtube without disturbing her. Not today!