Problems, problems, how you gonna solve ’em?

Sometimes you just gotta write through the fog of despair to find clarity.

That’s what I did Saturday, starting at 5:30 a.m., before my kids were up, so I could let go of a crummy week and have a fun Halloween with the family.

I discovered that when you put it out there, solutions float your way. Some come in the form of an epiphany. Some come from the wisdom of pals who know what’s what.

Problem 1: My son decided he doesn’t want to do any physio for cystic fibrosis, and instead prefers flipping chairs, thrashin’ sis and popping mom in the nose in protest

Solution: Epiphany= visit Amazon.com and order youth punching bag w/ 2-day shipping (we can’t take it any more)

This punching bag as as substitute for the rest of us.
This punching bag as as substitute for the rest of us.

Problem 2: Getting Eli’s treatments in before and after work and an extra session for crud cough battle

Solution 2: Friend idea=Let someone else do it!

After I lamented all my woeful woes, a CF mom (Hi, Becky!) texted me. Our kids go to the same day care, which caters to children with special needs. Crazy thing about CF – our children can’t get within six feet of each other due to infection concerns. They aren’t in the same class and don’t threaten to infect others – but CFers lungs like certain types of bacteria and can spread that bacteria to each other. This day care is so on it they basically follow our children around with Lysol any time the other is in a common space. Anyhow, other CF mom e-mailed me to remind me that our day care handles this type of special need – like vest sessions and breathing treatments.

This solution was so right there and so right on and we’d tried it once before, then gave up. Why? Mark brought Eli’s vest to school once and Eli stared at it in silence as tears streamed down his face. Pops never had the heart to haul the equipment to school after that. I guess we were both resigned to being the party responsible for pissing off our toddler with his treatments.

Becky reminded me that the school is there to help, as a partner for parents who need partners in care. YES.

Eli needs three sessions on a shaking vest a day to shake up his lungs so he can circulate and/ or cough out the thick sticky mucus his body makes. He needs good sleep because he’s a growing boy whose body is always fighting invisible battles. And we need to get out the door on time and sans exploding heads.

So off to daycare pops and the vest go again! It packs up in a bag the size of an XL carry-on, but it has rollers.

This was all a good reminder: We can’t get through this crazy game called life alone.

We need punching bags, friends and a helping hand!

xo

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Bruiser and me

daily-life

Thirty pounds of rage can flip chairs, shatter sound sound barriers and thrash at your heart, one so full of love for this little bruiser.

Seems at nearly 3 Eli has decided he has a lot to say about the hours of treatments and physical therapy we put him through each week to keep him healthy.

He can say quite a few words but prefers a gutteral, blood-curdling battle cry when he wants to get his point across. He curls his fists, plants his feet in place and opens his mouth. Piercing anger flashes behind those pale blue eyes.

His preferred punctuation marks for these expressions entailed a wild swinging fist that landed on my nose, a wooden puzzle flung at my ankle,  two upturned chairs, extra bonus screams for dad and a thrashing attack on sis.

Thirty pounds of anger is strong and loud and completely unnerving.

Because this is a little person who is docile and cuddly morning and night and whose face radiates not with anger but with joy and innocent mischief and curiousity in the time in between these outbursts.

Eli has CF and for the last month and a half his lungs have taken a good crack at him. It started out of nowhere one night, when my healthy buddy’s body turned on him. Cough-free one day, by the next, his eyes were full of goo and his lungs full of crud and he screamed himself awake tugging at an ear. We put him on amoxicillan the next morning instead of waiting the usual six to 10 days to see if the sickness looked to have stuck. The antibiotic halted the ear tugging and cleared gunky eyes but didn’t touch the cough. We’ve moved to Bactrim, a stronger antibiotic. He’s still coughing and we’re about to start a second 21-day round of it.

The shaking vest he wears for at least an hour a day has become enemy No. 1. I bring it out and he hides, laughing, under the kitchen table, a desk or bench. Then as I retrieve him he squirms and starts to scream and tells me “No, mommy. No!” Thus far in his short life, cuddles, cartoons, gummies, juice, a puzzle together – stuff like this – has been enough to make the physical vest therapy tolerable. His breathing treatments take an additional half hour, and he won’t do them at the same time as his vest.

With extra vest sessions for his cough he spends 14 hours a week strapped to equipment.

Not only that, we had the audacity to put him back in day care after a fun vacation He clings to us and cries each day we drop him off. Might I add he is at a wonderful place that cares for children with special needs. I love the teachers and staff and have total confidence he is engaged and happy when out of sight of his parents. The day care send me updates all day through an app, including pictures of him happily playing with other kids.

But any way, back to day care means waking up early-around 6 a.m.-to do his treatments in the morning.

Wednesday after finishing everything up, buddy mounted an assault on his parents and sister.

It culminated as he hit me in the nose, thrashed sister during bath time, screamed at pops, threw books, papers and toys from a bench and flipped a chair — twice.

What could I do but let his tantrum burn out enough to give him what he claimed he wanted in between blood curdling banchee screams — a bath.

I put him in the bath.

We had a conference.

I explained to my 2 year old that we have to do these things to stay healthy. His body has a disease, cystic fibrosis, so we have to try extra hard and be extra big, and we can’t scream and destroy since it hurts us and it hurts feelings.

“Do you understand, baby?”

“Yeah,” he said sweetly, looking down at the water.

Eli said sorry to me, pops and Laila. We picked up everything he’d attempted to destroy on his rampage.

I told him the story of “Eli fire engine,” which usually entails a family of fire engines rescuing a cat before putting out fires at the playground set by a neighborhood dragon.

Then he went to sleep and I collapsed and cried myself to sleep.

But looking back on a tough weeks there were also good times.

Laila got her first loose tooth. We made cut-out bats for a Halloween party. I sent (super late) birthday gifts to my newest nephew, but picking them out was a delight.

We thought through our routine and made changes to make it better and make Eli’s health better.

For one, I’ve asked for and received an order for a new breathing treatment. Hypertonic saline starts next week. It’s another two treatments a day, and yes, that’s a pain, but the point is getting  him to breath vaporized salt water so he coughs up this crap that ails him and beats this stupid cough.

Before I put him through that I’m getting him a faster nebulizer. A nebulizer is an air compressor that pushes air through a tube and into a contraption that vaporizes his medicine. We need a Cadillac. We have what feels like a 1999 Ford Focus and it’s pissing buddy off.

We are going to try to strap him to his vest while he’s asleep. I get up at 4:45 a.m. any way. Wish me luck.

Dunno, this kind of stuff also gets me thinking about our lives.

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I wonder why my son has to suffer, and if somehow there is a deeper meaning.

I’m not religious. I’m not the type who can quote scripture and feel better, or feel anything at all. . I’m not an atheist either. I pray. I send thoughts up to my mom, who died five years ago. I’m somewhere in the middle and I don’t really give it a label.

If nothing else, though, our horrible CF care week served to remind me about the importance of being kind and appreciating anything good, even something that is tiny and good.

I re-sest kind my default across the board. I focused hard on every happy moment that came our way.

Being a caregiver is hard, but I’m not the only type of caregiver. People are dealing with all manner of problems – addicted relatives, aging parents, sick children, deep disappointments they keep to themselves, all types of stuff.

After I dropped my daughter off one really hard morning, this is the stuff that was going through my head. You don’t know what someone has just come out of, so be nice. Let’s give each other a break.

Eli’s care brought other challenges — like, Mark and I, we need to be kind to each other. And in the mornings, we just weren’t, like, four  out of the last five days. The stress of getting a wailing, angry toddler through physical therapy before breakfast and again before bed nearly did us in. Both of us need to work on the following pattern:  Ignore bad behavior. Forgive bad behavior. Apologize for own bad behavior. Repeat. This person I married and love can send me from 0 to head explosion with a look. This person I married and love is the only person who sees me at my most vulnerable, there to hug me while I cry because our son is sick, because the care we give him to keep him well is akin to torture in his toddler world, and he understands why I’m crying like no one else on this planet can. In the madness of this week we somehow managed an escape. We hired a sitter and got out for a night of beatnik-style speakers and drinks and mingling, like wow, man. Snap snap. This is the kind of stuff we did together in Chicago, before we had kids, before life took us through fast moves across multiple states and financial hell and the loss of my mother and the birth of my daughter and then my son, who has this illness that needs to be cured, all within five years of saying “I do.” And here we are, still together and still able to have a laugh and a drink.

The other part of being kind is being kind to yourself. We both chose rest over domestic duty. Our days are exhausting and we have no family here to help. As a result we’ll be digging out from under the laundry all weekend. And that’s OK.

We’re all gonna be OK.

Buddy shows his scar and fist pump.
Buddy shows his scar and fist pump.

State of the Eli: My son’s quarterly health progress report.

It’s hard to believe, but Eli is 2 years and 7 months old this month.

Mark took him to his latest quarterly visit with the cystic fibrosis clinic. This has been the case for the last few visits due to my work schedule, thus, giving clinic staff a break from the crazy blogger who takes way too many photos and videos of her child at the doctor.

Continue reading State of the Eli: My son’s quarterly health progress report.

Smoothie every day: Melon-o-maniac

Melon-o-maniac, the smoothie obsessed with its own power.
Continue reading Smoothie every day: Melon-o-maniac

And the alarmingly-named bacteria growing in my son’s lungs is…

Streeeeeep aureussss!

I’d like to thank my gene pool, Mark’s gene pool and modern medicine, without which, I would never know what was growing in Eli’s lungs.

Continue reading And the alarmingly-named bacteria growing in my son’s lungs is…

Said no one ever: I love physically restraining my screaming toddler so he takes his medicine.

I love restraining my screaming toddler so he takes his medicine.

I love the way he moves his feet because my thigh has his legs pinned down, and it’s all he can do to protest.

I love the way he screams and shakes his head “no” again and again and again.

I love the way he says “all done! all done! ALL DONE! when he manages to wiggle out of my arms, which have pinned his body to my chest.

I love putting the mask back on despite his insistence that he is “All done!” and then holding his head in place tight against my chest so he can’t move it.

I love the sadness in his watery eyes and anger in his little furrowed brow.

SAID NO ONE EVER.

Eli is coughing again after a few weeks off.

We have hit a new phase called: Terrible 2s, treatment resistance!

What I’m trying to say is: “Rough session with the meds this a.m.”

(understatement of year)

Then Eli threw a Lego truck at my head

The end.

The Cystic Fibrosis Lifestyle Foundation will pay up to $1,000 for gym memberships and lessons for a CFer and supporter ($500 per CFer)

I went on a walk today at lunch.

It included 40 device-free minutes. My mind wandered to exercise. Not my own efforts (or lack thereof in recent weeks) — my son’s.

I found out about the Cystic Fibrosis Lifestyle Foundation via a contact on @thisiseli, our Twitter handle.

Even better, I found this foundation will pay up to $500 for gym membership or lessons for a CFer, and up to $1,000 for a CFer and activity partner.

The organization pays directly to the entity providing the service.

Yeah, I did it. It was me.
Yeah, I did it. It was me.

Every little bit helps. A $500 grant would cover my family’s Y membership. #nice. I’ve been meaning to get Eli back into the pool. With a stronger diaper. Or a water diaper plus plastic diaper. Because, yeah, my kid poo’d in the pool the last time we went for a family Y swim. Eli’s water diaper didn’t really…hold it all in. We’re those people.

Uhhh….Changing subjects now:

I’m going to apply for a grant. Those with CFers/ who have CF — have you? How did it work?

Let me know how it goes. Last year, the foundation ran out of grant money in November. This year, its donors have given more, my Twitter insider told me.

I still need to make an appointment for Eli to see an exercise physiologist, come to think of it.

Here is a paper on the role of exercise in cystic fibrosis, for those who would like to learn more.

Separate but related subject: Who has forgotten about their resolutions already?

I made no resolutions but managed to exercise through the holidays. February was a wash. I’m hoping better weather will be my key to moving and sweating more. It’s great for the body and the mind. Or I’ll just eat this cookie and take a nap. How do you stay motivated? noms zzzzzzzzzzzzzzzzzzzzzzz

xo

A year ago I trained for the OKC marathon, then didn't run it. I did get a swell overuse injury that's prevented me from doing any distance running since. WAAAA
A year ago I trained for the OKC marathon, then didn’t run it. I did get a swell overuse injury that’s prevented me from doing any distance running since. After running 50 yards and quitting at a Starbucks, my husband picked me up. We hiked instead that morning, in a nature preserve. Well, I limp-hiked. WAAAA #neveragain

The on-the-fence cough

Eli is opinionated about his treatments lately, in the same way most every 2-year-old kid tries to exert a little muscle over his or her world.

He runs and hides from the shaking vest these days, sometimes with a cheeky smile. Or, he hides, usually in a corner, mounting a protest of one with crossed arms, a defiant pout and a “NO. NO! NOO! ” In the latter scenario, he screams and writhes as we snap it on. Once hooked in, he throws stuff. Sometimes he runs forward when his vest is hooked to the ‘machine,’ ie, an air compressor, dragging it like a wee angry animal attached to a plow.

“I know, buddy. I know,” I say. “But it’s good for you.”

I hate this too, I think. But we’re getting it done any way.

Sometimes he tolerates his sessions, and even enjoys them, especially when we play on the floor, just rough housin’. Eli weighs more than 30 pounds now and is an excellent sit-up anchor and leg lift resistance partner.
Continue reading The on-the-fence cough

Today, hope

Greetings!

Today, I read something hopeful. It’s a blog post by an Australian with cystic fibrosis who writes about her health improvements after taking Kalydeco for the last 2.5 years.

The revolutionary drug addresses the cellular dysfunction at the heart of cystic fibrosis. The type of CF the writer has is not the same as Eli’s, but we hope drug combinations being studied currently will have the same positive outcomes for our lil buddy and his friends. There are 1,000 mutations of CF, but most people have at least one copy of the DeltaF508. Eli has two. In a way, this is really good; it’s getting the most attention in research. Fingers crossed that my son’s disease will be cured soon.

I also want to share really good news for the Oklahoma City Sooner Chapter.

The owner of my paper, Phil Anschutz, runs a foundation that has donated $25,000 to the Sooner chapter of our Cystic Fibrosis Foundation. It will go to support local research at the University of Oklahoma Health Sciences Center.

Thank you so much, leaders of The Oklahoman, Mr. Anschutz and those running his foundation for supporting this cause. And, thanks to the staff of the CF Foundation (Hey Celia I’m talking to you) for writing such a lovely grant proposal.

I sent thank you to everyone involved including a hand-written notes, pictures of Eli and some of the articles I’ve written about buddy boy and how his diagnosis has changed our life.

Listen: I’ve worked at places that wouldn’t throw $5 toward an employee’s cause.

We got $25,000.

Not bad. Not bad at all.

xo

To the cure!

Eli, cowboy
Eli, cowboy

Shaking off a cough

Eli started up with a little cough again pretty much the second he got off of his antibiotic from the last go-round.

Continue reading Shaking off a cough