Sunday, November 23, 2014

Bound Home

Ben's increased difficulty with swallowing is likely causing recurrent respiratory challenges. His baseline is changing and it feels like a step back with more treatments and medications to keep him well-ish. He did manage five half-days of school in a row and some fun times with friends before his lungs started filling again. So as annoying as middle of the night breathing treatments are, it's probably better to be less aggressive with the weaning back, at least until we get through this winter. Lesson learned. Yawn. We'll try to shore up a plan of attack with the pulmonologist this week.

Alex often supports Ben during his treatments. More often I'm finding Gigi in the pile as well.  

Ben was treated to a mystery surprise. I don't know how, but he received a get well letter from the St. Louis Cardinals. It was a truly bright spot in a crummy time for him.


Good news is we now have an awesome tutor that comes weekly to help me with our pseudo-homeschooling set up and Ben's power-assist wheelchair is supposedly on track to be delivered by Christmas. Jason and I also scored a little grown-up time by attending the Garden Glow at the botanical gardens with good friends. It's good to remember we are a couple on occasion, and not solely tag-team parents. 


Gardenland Express

We're taking things one treatment day at a time, but hope to be with some extended family for Thanksgiving. There I'll remember my blessings, that often show themselves in the sweet pairings of words from these amazing beings I'm privileged to help grow.  



At dinner Gigi offered, "Next time I'll have a pickle sandwich but without pickles. I don't like pickles." 

Gigi had a fever and was uncooperative in having her temperature taken.
Gigi: But I'm not sick!
Mom: Good, then you can clean up the toys.
Gigi: Well, maybe I'm a little bit sick.

First SnowFALL

I had just dropped the boys off at school when Gigi exclaimed, "Oh Benny! What are we going to do with him?"
Thinking he'd left his backpack behind I asked, "What do you mean?"
She replied, "He's just growing up so fast. He'll get married and...(shocked whisper) will he have kids?"
"I don't know, will you have kids?" I asked.
Gigi predicted, "When I'm grown? Of course, I will! I'll grow a baby in my belly and then I'll be Mom. And I'll let my kids clean up their room. And I'm going to teach my baby how to walk. I need to make a plan because I don't have a bed for her or any things like diapers."



Gigi (sad to be the only one not sharing a bedroom): I just want another human in my room. And not just a dog, or a doll, or a stuffed animal, like a sister or a mommy. 

Alex (after thinking too long about hunting): Sometimes I don't like people which is weird because I am people. 

As seen in the school hallway

Remember your blessings and pray for peace. I've started doing this every night at 8 pm (my phone alarms and reads, "Airway tx and pray for peace"). Join me? I also pray we'll all find time for the important things this season of reflection. 

Monday, November 17, 2014

Photdog Bomb

Trying to get a picture of the girl with a Hibiscus blossom in her hair. 

Friday, November 14, 2014

A Week of Yes in a World of No

Let's wrap up the Disney trip with a picture post. We spent the last day in the parks at Hollywood Studios and Magic Kingdom. The boys used the force while the girls mouse-ka-hayed and mouse-ka-hied in Disney Junior style. 



Say Good-bye to the Sorcerer's Hat













We said our good-byes to the princesses and went on a few more rides before watching the final fireworks (that caught the 7 Dwarfs Mine Train on fire). Gigi was wearing her sleeping beauty gown and crown when she got into line to see Cinderella and Rapunzel. When the wait was nearly over she anxiously told me she needed to take off her dress because they would know she wasn't a real princess.




Mine Train

Splash Mountain



On our travel day we explored Downtown Disney and used up our last meal plan credits at the T-Rex Restaurant.


Volcano Dessert

Tram at the Airport. He still had on his paper dino hat when we reached our house. 

I want to take this paragraph to give Alex a little praise. This kid walked all the same miles as Jason and I. He pushed the stroller when I was too winded. He never whined, or complained, or asked for a thing. He read books to put his sister to sleep. He hooked his brother up to his breathing apparatus. He was always friendly and polite and so grateful for every moment. He was always happy and always Alexander-the-helpful. The only tear he shed was when Jason and I gave him conflicting commands and he didn't know how to obey us both. He's the best travel buddy a family could have.

Though Ben spiked his fever less than 24 hours after our return, I think the trip was still worth it. A friend helped me realize that it's not healthy to avoid good things on the chance that bad things could happen. Isn't that what Nemo teaches us too? It was so freeing just to spoil the kids with yeses. Yes to dinners out, treats, and shows. No to medical appointments and phone calls. For a brief time we laid down our worries and work and embraced play.

I had placed princess stickers on Gigi's calendar prior to our trip so she could count down to Disney. A few days after our return Gigi asked when we'd go back again. I told her it wouldn't be for a long long time since it was a very special once upon a dream trip. She replied, "But you can just put more stickers on my calendar and then Oh Look, we can go!"

All this yes was thanks to Grampa. Thank you, Terry, for taking us to Disney World and reminding us to savor this heartbeat of childhood, this sliver of silliness, this pinch of pixie dust. Thank you for teaching us that it's okay to say yes now and then. We wouldn't have had this experience without your insistence (and patronage) and perseverance. We're so glad you were able to make it too. Whew, we actually did it!

Tuesday, November 11, 2014

I'll Stand

After more than a week of abuse delivered every four hours to his lungs via complex system of medical devices, Ben was starting to become resistant. This morning I woke him to take him to his torture chair and he just didn't want to go. I snuggled in with him and asked what could make it better. After striking down the option of skipping the treatment, since I could clearly hear the coarseness in his chest, he suggested I turn down the settings on the vest so it wouldn't pummel him as hard. I agreed to the compromise and grabbed his green blanket to make him more comfortable. I reduced his 14 hertz to 11 and busied myself with the morning routine. I became aware that Ben was humming behind the mask. The song was familiar but I couldn't place it.

When the treatment ended and he could speak, I asked him if he knew any of the words of the song he was humming. He gave me a few bars of the chorus, but I still couldn't remember the title or more of the words. It was soon time to take Alex to school and I didn't want to lose the song. I called my cell phone and hummed it into my own voice mail so I could think about it again later.

When I got a free moment, I searched the internet for the lyrics until I figured it out. This is the song Ben sang to himself for comfort this morning. It is called, "In Christ Alone."

https://www.youtube.com/watch?v=3ch6eXkQWU8

The lyrics:

In Christ alone my hope is found,
He is my light, my strength, my song;
this Cornerstone, this solid Ground,
firm through the fiercest drought and storm.
What heights of love, what depths of peace,
when fears are stilled, when strivings cease!
My Comforter, my All in All,
here in the love of Christ I stand.

In Christ alone! who took on flesh
Fulness of God in helpless babe!
This gift of love and righteousness
Scorned by the ones he came to save:
Till on that cross as Jesus died,
The wrath of God was satisfied -
For every sin on Him was laid;
Here in the death of Christ I live.

There in the ground His body lay
Light of the world by darkness slain:
Then bursting forth in glorious Day
Up from the grave he rose again!
And as He stands in victory
Sin's curse has lost its grip on me,
For I am His and He is mine -
Bought with the precious blood of Christ.

No guilt in life, no fear in death,
This is the power of Christ in me;
From life's first cry to final breath.
Jesus commands my destiny.
No power of hell, no scheme of man,
Can ever pluck me from His hand;
Till He returns or calls me home,
Here in the power of Christ I'll stand.


Sunday, November 9, 2014

Second Star to the Right

Today's Yesterday's* Update: Ben is home again and doing well. This post is being penned with the literally inspirational sounds of an airway treatment. We're hoping for a stable recovery and counting the blessings that have come in the form of easier breaths, helpful hands, hot meals, easy going kids, and pretty terrific and nearby health care facilities and professionals. When times get hectic and sickness strikes it's too easy to neglect the angels getting us through. All we need is a little faith, trust, and pixie dust. Dust = a village of helpfulness.

Day 3: Halloween

Let me back up a little. We'd had early opportunities for trick-o-treating prior to our trip as it seems All Hallows Eve is spilling into a month long celebration of Pintastic proportions. October was a blur of medical stuff, but there are some jpegs floating on my desktop offering proof that it wasn't all coughs and co-pays.

Jason and preschool secured our anthropomorphic winter squash.


Princess Pumpkin and the Cyclops

Some old fashioned fall fun was had at the parish picnic.


Costumes were themed this year and phoned Internetted in from Amazon or amassed from closets or bins.

What is Peter Pan's favorite restaurant? Wendy's

How like Tink to try to hide her dirty feet


Early Joke-o-Treat.

Where Does Tinkerbell keep her groceries? In a Peter Pantry.


Mummy making contest at a scout meeting.

Why couldn't Tinkerbell speak? Some boy scouts had turned her into a mummy. 

Back to Disney Day 3: Halloween

There's some kind of big Halloween party held in the Magic Kingdom after hours that costs extra and goes late into the night and involves treats and characters and stuff, but we figured going to Disney was treat enough and didn't feel the need to add more. I'm glad of the decision because we were overwhelmed with all there was to do already. As it turned out it may have been a first Halloween without candy and nobody minded. I take that back. We had no candy that Halloween at the National Institute of Health, but people minded.

We started the day at the Animal Kingdom's safari ride. We were lucky to see so many animals and our biggest animal lover, Alex, was entranced. Then we headed for the Lion King show where both boys were again given participatory parts. Alex taught our section how to act like lions and Ben-in-chair led the music parade.


Lion Pride Rawr



We almost had a medical brush right about here. My not-yet-healed lungs flared up big time after I took a jaunt across the park alone. I was in a lot of pain and couldn't catch my breath. Fortunately I brought my favorite nurse along and he got me through it, no helicopter needed. I learned my lesson and stuck with our snail pace the remainder of the trip.

Darn pain kept me from my favorite Animal Kingdom ride



After a good long rest and some pain management, we got a late start to our evening at Epcot. We put on our Peter Pan inspired costumes and headed for the transportation station. A family joined the line with a little Captain Hook and three Elsas. Hook had a score to settle. Then the mortal enemies had a nice chat on the bus about Pokemon.





We had dinner with some princesses in Norway then meandered through a few countries before the finale fireworks. The World Showcase is my favorite part of Disney and I could spend a whole day just taking in the details.
Captain Hook, Tinkerbell, Aurora, Peter Pan, Wendy, John Darling, and Captain Kirk



I think Peter may have found his shadow in Italy.


Coloring in Germany


We had a beautiful "Parisian" moment watching Illuminations over the lake. Gigi, perched atop Jason's shoulders called down with arms outstretched, "Fambly hug!" We all embraced and reveled in the perfect Disney snapshot, punctuated by pyrotechnics. Then chaos ensued. Ben had unlocked his chair to join in the hug and assumed someone had hold of him. He was on a steep incline and shot downward along the fence line where Gigi had been placed. She was sideswiped and took a chair handle to the cheek. The fence and Jason's sharp eye averted further disaster. Ah, ears to tears.

We'd lost Grampa to the American Adventure but made our way to the bus stop hoping to catch him there, referring to him along the way as our "Lost Boy."  In his stead we reunited with little Hook and the three Elsas. The kids passed the time sharing the news of the day and sword fighting. We eventually all found our way back to the Wilderness and agreed it had been a very Happy Halloween.


*This post was so long it took two treatments to complete. And the day changed.

Saturday, November 8, 2014

More Disney Dichotomy

The logical next post should feature the next Disney day but first, an update.

Ben had a good night and morning after coming home from the hospital. But yesterday, after his 11 am neb and airway clearance treatment he wanted to sleep rather than eat lunch. I woke him up for his 3pm care and he was in distress. I assessed, started treatments and called the doctor. She had me do an additional treatment we keep on hand and sent us back to the emergency room. He'd also been scaring me with choking episodes that I'm still not sure is related to this illness, his new problems with swallowing, or some combination. I'm happy to report that he's had a stable night, though the hospital's comfort with sats in the low 90s is hard for me to accept. I really just want to give him some supplemental oxygen to make it easier for him to breathe, but I guess there's new science on that. Anyway, he's looking much more comfortable now and I think we'll be heading home again tonight after a bolus of fluids.

FaceTime Visitor

Now back to that other life we were living last week-Day 2:





We headed for the Magic Kingdom again to spend more time in the lands of Fantasy and Tomorrow.

On the People Mover. I forget what we asked them.

Won't be long

The boys discovered there was a scavenger hunt involving magical portals and trading cards all over the park which was a lot of fun, but sure adds more miles to the old pedometer.


Gigi continued her celebrity quest. She told Tinkerbell she was going to be her for Halloween, and Guys, that's what Tink was going to be too!




We ended the morning with a delicious lunch at the Liberty Tree Tavern. Toffee Cake. Once more a parade thwarted our exit strategy, but it added an air of festivity to our conclusion.




Processing on the Boat Ride Home

After naps we went to Hollywood Studios to see the Fantasmic show. It was worthy of the trek.


Do you like my party hat?