A light in the storm

Well, it’s been quite the chaotic December in our home and not just because of extra holiday shopping, cooking, visitors, etc.

Little boy crashed out in a shopping cart.Shopping exhaustion: Raphael fell asleep in my arms at the big box store (you know the one) and took a snooze in the cart.

The month started with the culmination of a long string of medical appointments for Raphael. Good news is his hearing is good, in at least one ear for sure. And his vision, though slightly imperfect, doesn’t warrant eye glasses. Hurray for pediatric audiologists and ophthalmologists who make the tests bearable for little ones and are good at answering endless parent’s questions.

I don’t even notice Raphael’s nystagmus anymore, but occasionally someone stops and asks me why my boy’s eyes move rapidly side-to-side. What would indicate a neurological problem in others is simply a genetic happenstance for Raphael. His brain has learned to compensate for his shaking baby blues. He sees in sort of a strobe light effect where his mind captures what he needs to see when it appears at the center of his field of vision and ignores the rest.

Raphael, 2 1/2, sitting in the eye doctor's office chair smiling at the nurse.Raphael flirts with the eye doctor’s assistant. I’m starting to feel OK bringing him to clinic visits at Children’s Hospital when he isn’t in pain.

Fortunately, this season’s holiday parties and events came early in the month because the second half got pretty hairy.

Elijah in profile, engrossed in his first show: Toy Story on Ice.The Toys are Back in Town!

Elijah engrossed in the sensory overload spectacle of “Toy Story on Ice.” Raphael tried to escape over the seat backs when the lights went down and the sound went up. He missed Act 1 by cowering in Greg’s arms in the lobby and slept on my chest with earplugs in for the second half of the show.

Does the music really have to be that loud?

Since late August, when school started, it seems everyone in our family has been sharing bugs back and forth. I know I never really feel not sick, and on my better health days I realize my shoulder is half killing me/half numb all the time. I was just not designed to be carrying around a non-walker for two and a half years in my left arm. (I try holding him on my right but it just doesn’t work and nothing gets done.)

Nevertheless, our hectic, ever changing routines keep us all going, and life’s small moments of joy have greater impact than ever before. School, work, birthday parties, doctors, therapists, special needs advocacy, and adapting every little thing… It never ends, but I think it has finally become our “new normal,” which is supposedly some way of being that people kept telling me we’d reach and I kept hating them for it.

Greg and I are giddy with every new word approximation Raphael utters, every independent step he takes across the room, and every new bite of actual food he manages to chew and swallow. Pizza! Who knew he’d be able to manage little bites of homemade pie. It’s becoming a family favorite.

We repeat every brilliant thing that comes out of Elijah’s mouth. A visit to his alternative school where Democratic Education is practiced sometimes feels like a scene from Lord of the Flies. Mud-encrusted children swarm for position every time a train passes by the backyard. Boys – some shirtless and clad in pink tutus, others in superhero garb – yield foam “swords” and swing from a rope. The apparent chaos is actually teaching my big boy a great deal, and we are blown away by our preschooler’s ability for abstract thinking and the wondrous things he says – for which I repeatedly kick myself for not writing down in the moment.

What I love about my kid’s preschool is that as long as it’s not frostbite-cold out, outside is a classroom. There is always a teacher outdoors so if that’s where a kid wants to be, that’s where he learns. Each child is responsible for himself and the greater school community but that responsibility is paired with tremendous freedom. It’s a boy’s dream school.

Pigpen’s, I mean, Elijah’s happiness is directly proportional to how dirty he is when I pick him up – which makes me happy, too.

So my family had been trucking along pretty happily since Turkey Day, and I looked forward to the last couple of weeks of the year to have Elijah home on winter break, maybe slow down a bit, and perhaps get a bit caught up on the perpetual to do lists at home and work.

Then Raphael got sick.

Plans changed.

A cold, which isn’t a big deal for most kids, can become a dangerous villain for my little one. He is a super strong fighter and has been through more in his short life than most grownups I know, but in many ways, his health is too delicately balanced.

Truly, I could do without reminders that life is fragile.

This time, nasal congestion lingered and came with raised spots on Raphael’s tongue. He had a bunch of rough nights and began refusing more and more types of food and drink. He kept pointing to his throat and throwing his head back as if to say it hurt to swallow. (Later, his pediatrician would say that inside his throat looked like hamburger meat.)

Raphael’s occupational therapist was alarmed by his increased choking on soft melty chewables, and then his refusing home-made purees, and then his only accepting two kinds of baby food and only when served directly out of the jar. She advised taking action to avoid a food jag.

“Don’t offer the same food more than once every three days,” she recommended. I began wasting precious time trying new recipes only to end up throwing more pureed food down the drain than ever.

Raphael has a long way to go to be feeding himself a diet of variety but he had been making good progress recently. Now, suddenly, I became worried about losing ground on the feeding front, which I work so hard on with him at every meal. It’s not easy to keep a calm demeanor when you’re worried about food aversions setting in and about a 23-pound person dropping weight. Ugh, stress.

Raphael and I visited his new pediatrician, and I was told I’d have to just hang on and bear it until his virus passed.

OK, I wouldn’t allow myself to overreact to my boy’s food refusal. “This will pass,” I told myself and stopped at the grocery for Pedialyte since my homemade sugar/water/salt/banana oral rehydration solution had been roundly denied.

Raphael got sicker. And sicker. He barely ate or drank, kept putting his head on the floor and signing “sleep,” and developed a fever.

Greg and I barely slept and began bickering during middle-of-the-night holding-our-boy-upright sessions. Eventually, Raphael would only sleep if one of us held him while standing in the bathroom, doors shut, fan blaring. He wouldn’t even let me sit on the toilet lid to rest.

Back at the doctor’s office about a week after the first visit, Raphael was diagnosed with a double ear infection and put on antibiotics, which began with shots in both of his skinny legs on the first night of Hanukkah. That, in lieu of a family celebration.

Raphael rallied the next morning but then started getting recurrent diarrhea blowouts along with more vomiting, coughing, and fever. Bagged stinky clothes and towels piled up on my laundry room floor. By Friday, even though he was finally giving me smiles and playing a bit, Raphael couldn’t get his blood oxygen saturation high enough, so Greg took him to Urgent Care at the Children’s Hospital satellite near our home. (By the way, I use this pulse oximeter from Costco to measure blood oxygen.)

My sister and her kids were visiting, so for the first time, I wasn’t the one to take him.

Uncle Josh playing with little Raphael.Raphael with Uncle Josh. I let urgent care wait a few hours since my east coast family was in town for just the day before heading to the mountains on a ski holiday. Raphael perked up surprisingly amidst adoring cousins and plenty of presents to open. A little fun before the storm.

 Raphael watches his brother roll on the floor in excitement under his new toy spaceship's box.Copay for hospital admission? $500… The cost of holiday gifts? Too much to share (my husband might read this blog)… Elijah’s exuberant rolling-on-the-floor reaction to opening the Star Wars Y-wing Starfighter his Aunt Cindy gave him? Priceless!!! (See him? Under the box?)

At Urgent Care, Raphael fought like crazy to prevent the medical staff from poking and prodding him. It took four people to hold him down while they did a deep suction of his lungs and got the oxygen tubing attached to his face, both of which ultimately helped.

After several hours and a long wait for interpretation of a lung X-ray (I can’t even count how many radiation doses my son’s had by now), Greg and Raphael got an ambulance ride to the main Children’s campus. Because of our experience in handling similar past episodes, the doctors debated letting Greg take our boy home instead, but we have to be medically aggressive to keep pulmonary hypertension at bay, and hospitalization won.

This is maybe the fourth or fifth time Raphael has had Bronchiolitis, which is similar to RSV but is caused by a number of viruses. Raphael’s lungs were extraordinarily challenged at birth, and he has a tiny, reactive airway and an uncoordinated swallow, so every mucous-causing cold can become devastating when he lies down and phlegm collects in his throat and the vicious cycle of pulmonary/gastrointestinal reactions start.

Fortunately, this hospital stay was short, and discharge went much quicker than we’ve experienced in the past. Greg and Raphael were home for a late lunch the next day thanks to a ride home from Uncle Sean.

Cousin Liam gives Eli a holiday gift.Cousin Liam, four days younger than Raphael, offers Elijah a Hanukkah present.

The next few days Raphael regained strength and suddenly blurted out a new word: “Eat!” It’s funny because that’s exactly what he wouldn’t do when most of his energy had gone toward just breathing. Poor kid was starving.

He’s putting on weight now and trying to walk and talk and chew again. My kids are back to their silly antics.

No matter that I’m once again used to the tangle of cannulas and extra meds and the new sound of the oxygen concentrator producing a whirling/pulsing/sucking background noise around the clock.

Oxygen tanks lined up along side a bunch of opened toy gifts.Toys juxtaposed with oxygen tanks. Just not right…

Silly Elijah peering through a window in a box from a holiday gift.Elijah grins next to his green Tinkerbell cake.Elijah having fun with the boxes gifts came in and the Tinkerbell cake he begged me to buy.

 Silly Raphael with oxygen cannula and his brother's underwear on his head.Not a hat: Raphael has a weird thing about putting his brother’s underwear on his head.

Our holiday ended a couple of days ago and as we celebrated the miracle of lights, I was reminded about how grateful I am for my little miracle boy. He and his brother are truly the light of my life.

We’ve come a long way since this time last year. As the new year begins may you, too, dear reader, be blessed with love and light.

Father showing his sons the fully lit Hanukkah menorah.All my boys watching the full menorah’s candles burn on the eighth night of Hanukkah. (Yes, of course, the oxygen was turned off while he was near the open flames.)

About elizamom

Colorado mother of two small boys. One happens to have Down syndrome.
This entry was posted in Family time, Gratitude, Joy and Pain, Parenting Special Needs, Reactive airway, Stress and tagged , , , , , , , , . Bookmark the permalink.

5 Responses to A light in the storm

  1. Melanie Mathews says:

    I read about your chaotic life this past year and I am so in awe of your strength. I remember many sleepless nights up with sick girls over the years, but nothing compared to your description of standing exhausted in the bathroom holding Raphael without even being able to rest on the toilet seat.

    From my family to yours, I wish you a happy and healthier New Year Liz. God Bless You!

    Melanie Mathews and Family

  2. Mary McGee says:

    I love and admire you, dear Elizabeth. The pictures are wonderful. I am so glad you are doing this blog.

  3. Patty Love says:

    Elizabeth, I don’t know how you are holding on–but there you are. By sharing your strength, you make us all stronger. ❤

  4. Deborah says:

    So sorry that Raphael got sick again and has been back on oxygen. I agree that there’s something not right about that picture. Heartbreaking to think of him hurting.

    Sending all my love for a healthier 2012 for you, Greg and those beautiful boys.

    Love the haircuts, btw.

  5. Pingback: Crying over coffee | The Upside

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