Thursday, July 16, 2015

A Glance Back

Over the course of the last few weeks my thoughts have been in the past. I've been writing about some of our early experiences with Ben for a friend and trying to recall all the details required pulling out the old spiral notebooks we kept as journals to communicate with the home nurses. There are seven volumes spanning three years plus some spotty journals. I wish I had been blogging then. Going back through those hard moments was emotionally difficult, but the hindsight has given me the gift of gratitude for where we are today. This kid that fought for his days at times by the breath, is currently scrounging in the fridge for a post dinner snack, just like a teen. When I'm caught up in a new worry from a medical finding or the unsteadiness of his gait or the squeak in his lungs, it's helpful to remember where he's been and be grateful for the good days in-between.

Four Weeks Old

Sometimes I'm not sure how we did it, but not doing it was never an option. We cried and ranted and leaned on others. We prayed and played and begged for help. And we figured it out.

Home from the Hospital. Now what? 

Leaving for work was necessary torture. 

Edema! So obvious looking at this now. Didn't see it then. 
There is a baby in this picture. 

Meeting his Great Grandmother, Ruth. 

Our evenings went like this. 
We were determined to find some normalcy and fun. We'd load up the clinic and take the show on the road, praying we didn't forget any essential medical items that couldn't be easily replaced out of town.   We found a way to power his equipment en route and always charted a course to the nearest hospital (still do).

First trip to Grandma and Papa's

 Putting on the pulse ox probe for a trip to Iowa. So many car seat fails in this picture, the least of our concerns at the time. 

My favorite time of day; bed time. Please God, let a good nurse show up at 10. 

Still, there was infinite joy to be found in every day. Even the darkest ones. 

I remember that first barren Christmas. Toys for tots showed up on our doorstep with a donation for us and I'd donated toys to them. We exchanged socks, soaps, and bought a mini space heater because the nurses complained about how low we kept the heat. Ben got tools the therapists suggested for oral motor development and a bad case of pneumonia.

When we learned Ben wouldn't be able to vocalize due to his trach, we learned sign language which he readily absorbed. We learned how to advocate and break through the walls of the insurance and durable medical equipment companies. We learned doctors aren't always right and sometimes they act like jerks, but usually they are doing their best and aren't good with not having answers. We learned we aren't always right and that we sometimes act like jerks because we hated not having answers too. But this is our journey and it has been a humbling, beautiful, crazy ride both ways uphill in ten feet of lava. We just keep putting on our lava shoes, singing or cursing our way through. It works.

One Year Blessed. 
Then Two.
Now thirteen years extraordinarily blessed. 

Wednesday, July 8, 2015

Random Acts of Summer

This summer may well go down as the wettest in memory, but despite the unusual monsoon, we've had plenty of summer fun. Cue the caption dumping post with Gigi quotes intermingled. We kicked things off with our parish picnic.

I will call you Clyde.

She needed no coaching with what to do when a pool chaise crossed her path. 

As he needed none when gifted with a hollow stump dangling over a cliff.
Alex spent his day of fun Christmas gift. He chose to go to the Magic House.

Fruitful Looms!
Who needs shark infested oceans?

Jason and I were trying to decide where to eat after church one Sunday.
Jason (to me): Whatever you want to do, Dear. You get to pick.
Gigi: Hey! Is it Mother's Day again already?

Time at Gramma's meant feeding peacocks, "fishing," and catching up on Garfield comics.

We participated in a race to combat Epilepsy for a school pal.

Bubble Bus

Jason took Gigi into the men's changing room at the pool.
Gigi: This place smells like a kangaroo.

We cheered on a co-worker in dragon boat races.

Jason took the youngers to play miniature golf and brushed putters with a Cardinal's injured pitcher that was having family time too. This is the picture he took of those events.

We met the new polar bear at the zoo. On the way we had this exchange with our girl.
Gigi (pointing to a Woodard van): Follow that truck! He will take us to the zoo.
Mom: If we follow that truck, he'll probably take us to a flooded basement. Pick a mini van to follow instead.
Gigi (after a thoughtful pause): After the zoo let's find that truck again because I really want to see that flooded basement.

Not the polar bear.

And we've had lots of down time in our cozy abode waiting for the grass to dry.

Taken just before she dropped her creation.

She wants to learn to read. 

She claims she doesn't sleep.

Always drawing.


Get out of the lava, Mom!
I have on my lava shoes.
Those only work for one jingle bells.
We were playing in the backyard and Gigi was trying to come up with new things to do.
Gigi: Let's play soccer. Maybe you'll get a home run!

We explained that soccer is goooooals and baseball is home runs.


Gigi: Let's play ring toss. You could win a home in Reno!

Sunday, June 28, 2015


Exactly four weeks after my biopsy procedure, my neuromuscular doctor called with results. As things have gone with our cases, the findings don't point to a definitive diagnosis, but it provided some clues. First, the great news is that my muscle appears healthy and a progressive muscle disease is not evident. The muscle biopsy was non-diagnostic but will be maintained and stored for further staining if needed. However my skin biopsy was abnormal and showed a neuropathy, pointing to a problem with how the nerves and muscles communicate. The neuropathy alone, however, doesn't explain my clinical muscle weakness. Somehow my body isn't tapping into the resource of healthy muscle, causing weakness and fatigue. So no progressive muscle disease, but still a neuro-muscle issue is evident. I'll continue to be followed in the neuromuscular-cardiac clinic and will keep fine tuning the cholinesterase inhibitor dosage. Ben's appointment with the same doctor is upcoming so we can talk about how this diagnosis may relate to him then. After sitting with the news a day I feel relieved and confused and hopeful and a little aggravated that the assault on my leg seems mostly for naught. Onward.

In the spring, we dismantled our little backyard deck. It was in need of repairs and wasn't very functional. It was already surrounded by a small concrete patio, so we decided to go for one level space by filling it in. We got bids and signed one and then our region tried on the identity of tropical rain forest for a few months. Finally, the clouds parted long enough for the pour and our patio is complete. Mostly. Somehow it wasn't communicated that we'd like them to remove the old deck post still embedded in the concrete and we need to find a way to patch the missing siding on the house.



The workers cut a peep hole out of the protective sheeting so Alex could watch the whole process.


We knew the color wouldn't match, but it's more noticeable in the picture than in person.
Function over form.


Gigi's first year of dance classes came to an end with her first recital. I wasn't sure how she'd do on stage since she's often hesitant to try new things or to have an audience outside of family. She did great with her Shirley Temple tap number, "When I grow up." She spent the rest of the show in the green room with the whole dance troupe and came home twirling and leaping into the night. I was on the fence about signing her up for dance again next year because she was beginning to resist going to class. I think feeling shiny under the stage lights may have changed her attitude.

Kid Quote

Gigi was complaining in her car seat.
Mom: I don't want to hear any fussing.
Gigi: Well too bad, I already started.

From early on, Ben has always loved to swing and we encourage the activity because it is good for his vestibular balance and moves his muscles without much force. His self proclaimed favorite spot in the world was the orange handicapped swings at a nearby park. He recently made the sad discovery that he'd grown too big for that seat since his feet dragged on the ground. Another local park recently added a new handicap swing. Ben eagerly tried it out and it was a perfect fit.

Happiness is in a swing that fits

Happiness is in a snow cone

Happiness is in sharing