October 22, 2015 - Headshots and MRI

Spent most of my spare time today trying to take a decent picture to replace the manic-fabric-nutbar shot I currently use. Magazine article submissions require a headshot! Argh! I tried some neutral, serious poses between dropping my daughter off at school, and returning there again for the annual start-of-the-year IEP* meeting with her teachers, classroom aid and learning resource teacher, two hours later. Deleted them all.
*Individual Education Plan for students with special needs - legal document outlining the team's three goals this school year: feeding, educational and social

Attempt at "placidly neutral" - and not the worst shot!
I need to get more sleep...

I continued to attempt natural and pleasant poses in the 10 minutes I had alone before the appliance repair guy showed up. Snapped away while he was in the basement, humming and "diagnosing" the dryer's problem. Ran out to pick daughter up. Took (deleted) more while she bathed.

Got daughter out of the bath, brace on, clean clothes, kids in the car (one angry; tablets - both), met husband at the roundabout, main entrance to Children's Hospital. Said goodbye to son, husband and car. MRI for daughter at Children's (scoliosis) while husband waited at son's SLP* group session.
*Speech and Language Pathology - board games and facilitated social interactions

Reconvened 2 1/2 hours later. Considered eating out, but too much work to agree on a restaurant. Drove home, instead; Disregulation Level: Moderate.

Two of us ate left-over chicken kabobs on top of left-over noodles, with 1/4 jar of yummy butter chicken sauce. One of us ate a veggi burger between two slices of bread. One of us devoured 2 microwave chimichangas and a pickle. 2 drank milk, 1 water, 1 I don't remember. All ingredients from Costco.

After the boys left the table, there was a very long session of "Cat-Dog, Human", in which my daughter sits on me and alternates feeding me imaginary catnip and dog cookies. It's a terrific game, now that I've learned how to play it. When I let her drive, we always get home safely.

Kitchen Island - Thursday, October 22, 2015

Lamp shade, assortment of dessicated bugs

From top left: "Cat-Dog, Human" took place without her brace. Double heaven! Afterward, she looked up at the bug-peppered kitchen light fixture and demanded satisfaction. All summer she has been fascinated by the building collection of dead wasps, fruit flies and other random bugs trapped within. My husband washed it out as the party continued upstairs, briefly and energetically joined by my son.

Nighttime rituals observed, and now, at 11:32 I am finally seeing my head shot attempts. I want to write, but last night's little post kept me up til almost 4. Don't know how long I will last.

Continuing counter-clockwise, the green kit is my daughter's Humatrope* injection pen. It is given at night, since that is when the body does its growing. It needs to come to room temperature before the dose is given - the cold can hurt.
*human growth hormone

Manual and paperwork from our broken dryer. It will cost at least $300 to fix, but the technician thinks it's worth it: It's a good machine, it should last you another 4 years. FOUR YEARS??? Is the expected life-span of a new dryer just 11 years???? He will come back tomorrow with 4 replacement parts. Our hand basket is well on its way to Hell.

Son's water bottle.

The library book my husband is currently reading on the bus: The Girl Who Saved the King of Sweden. It is excellent, he says.

Lastly on the island: a bouquet of late-blooming garden flowers from the mother of the person who helps me out with the kids twice a week. This is our respite, provided by the MCFD. It took us 7 years to get to the top of the pile to receive this funding. $196.30 per month buys roughly 3 1/4 hours help per week.

In the love note bowl on the breadbox: faux Tupperware, waiting to be returned to dear friends who share their celebrations with us, and send us home with leftovers. Love left-overs! I ate the resulting hash myself, at least three days running.

The tulip tree on the city property in front our house is raining down crispy, orange-brown leaves, but barely a portion has fallen. I've filled the yard waste bin with them once, already. This weekend is Extra Leaf Pickup; hope I get time to rake tomorrow.

After repeated hit-and-runs by the construction trucks coming in and out of our alley, squashing several of my plastic garden pots, I finally moved some of them in front of the garage, where they should be safe. I'll shuffle them back when the house is built, or my husband needs his car, whichever comes first.

My daughter's former bean garden, laid to rest

Is there any point in getting a car wash when rainy season is almost upon us? I think not. An interior vacuuming, however, would be a different story. Sadly, it's waaaay down there on the list of priorities. My car is a utilitarian vehicle.

The music: Neil Young BBC concert, 1971; The Witch Doctor Song - 3 different versions; Lonnie Donegan singing "Does Your Chewing Gum Lose its Flavour?" (Want to know the Beatles connection?)

Coming up tomorrow: Pro-D Day: 2 hours neuroplastic tutoring at the Vancouver Learning Centre for my daughter in the morning, followed by 1 1/2  hours patting dogs with respite provider (we love her!), and a play date at a classmate's (rare and highly anticipated). For me: catch up on emails and fix up late-night blog post mistakes while waiting for daughter at VLC; meet with fellow classmate from Master Recycling Class over tea to discuss recent trip to the Transfer Station and Landfill (excellent field trip!). Followed by a "Lady Beauty" appointment - a gift I give myself every two weeks: an hour and a half on my back, eyes closed. Wake up, pick up daughter from play date, rush home to meet appliance repair person. Later, laundry.

October 21, 2015 - Summer is Gone

Late August - that was then...

Late October - this is now

Summer is gone. Socks now, slippers and boots. Birds and pedicure migrating South. But I love the leaves when they're dry and crunchy. Good-bye for now.

The music: Dylan, alphabetically, starting with "4th Time Around". Dylan never disappoints. Highlights: "To Ramona", "Buckets of Rain", "It's All Over Now, Baby Blue" - as usual. A new favourite: "Blood in My Eyes". But "To Ramona" a hundred times.

When the boys had left the table, my daughter and I turned on the music, and nodded and smiled as we continued to eat.
My daughter on Dylan: He must be a star. His singing is bad. 
My son: Is he even saying words?

Chicken, chard, roasted veg, basil in olive oil, Dylan

Dinner: the entire chard harvest from the little alley garden cooked down to barely a meal-ful. Luckily, the kids won't eat it. Not at all bitter, as I thought it might be, with a little garlic from the garden, and basil, kept under olive oil. The basil takes up prime real estate in our over-crowded fridge, but it's worth it.

The right tool for the job: tongs, bought in Japan, were perfect for flipping the chicken kabobs - which neither of the kids liked. That's a lot of left-overs for me to eat alone. I'll have to get creative...

To do list: while I cleaned up the kitchen, my husband attempted to locate the manual for our seized-up dryer: the clothes are wet, and all the lights are flashing. That can't be good. Manual eventually located near the dryer - good thinking, whoever put it there 7 years ago - but it doesn't say anything about this combination of lights. I 'spect the dryer might be toast. New appliance lifespan is obscene. The number of broken appliances and electronics in my house is obscene. The fact that we will probably need to buy a new one already is obscene. Tomorrow I will call the 1-800 number and hang the wet laundry up to dry...

No more gardening for a while

Not a lot of time in the garden, these days. Other than raking, there's not much left to do. It took a while to find a better home for them, but the hostas are gone. They're now with a friend of the mother of someone who helps me with the kids. Sad Lilac now lives at a neighbour's; if it blooms this Spring I will learn what colour it was. The garlic is planted, protected by excellent, brand new wire. The parsley, run over by a truck, has been moved to a new container. The yard waste bin has been filled with leaves once already, but the ground is covered again. Sometimes I wish I had a leaf-blower.

Summer really is gone...

Humatrope 7: From the 13th Floor

Humatrope collar: used alcohol swabs, needle caps, words of love

Of the swirl of confusion that is my memory of receiving my daughter's diagnosis from the paediatrician, this sentence stands out clearly: If I was going to pick a disability, I'd have PWS over Down Syndrome any day. Until a few moments earlier, when she led me into her private office and graciously invited me to google it there, alone, I hadn't realized my two-month-old baby had a disability at all. I was ill-prepared to feel grateful for the relatively encouraging diagnosis, or to contemplate a choice between the two. I wouldn't have picked either one.

My first reaction was fleeting, just a glance at the tiny, open window, 13 storeys up; and a brief calculation of the best path to that window, over the desk on which sat the computer... the computer. Google it? No thanks. I'll sit here in the semi-dark, and stare at this beautiful, sweet, perfect, 2 month-old baby with the sparkling eyes. She fills me up and smells like butterscotch.

One dead of silent night in the NICU* I asked the nurse - whispered to her, and it still seemed too loud: You've seen lots of babies, all sorts of cases. Do you think it's possible this baby could be... dull?
Oh, no, not this baby. Just look at her eyes.
*Neo-Natal Intensive Care Unit

I hoped it was the antidepressant I had continued taking throughout my pregnancy, that had seemed so necessary and recommended. My mom thought she just needed ripening. She was beginning to show some spunk, we thought. We'd even heard her cry, kind of. That's why I had gone to what I thought was an ordinary 2-month check-up, merrily alone: I was clueless. She had sparkly eyes! As I sat with her in the dim, and the doctor saw to her other patients, my husband, also clueless, but now alarmed, was rushing there from work. The doctor had called him herself.

Tassles: needle caps, found pearls, extra beads

We did eventually google it. A lot. At least my husband did. I prefer my bad news in small instalments, don't like to dwell too much upon the future - especially since the present doesn't much resemble any of the permutations we were advised to expect. I get the main points from my good friend, Heather, president of the BC Prader-Willi Association. She keeps me apprised of developments: clinical trials and research; supplements and diets; new babies* and untimely deaths; controversies about Human Growth Hormone, dealing with rigid behaviour, scoliosis surgery options; a remedy for skin picking that works; info about types of alarms for fridges, and GPS for kids running away to seek food; heart-wrenching anecdotes about ordinary people in extraordinary situations added to the mix along with all the other stuff parents of all sorts must deal with.
* one or two in BC per year, or 1 in 20,000 world-wide, across all populations. The least rare, rare disease, we are told - for whatever that's worth

PWS is bad science fiction – a cruel kind of torture that morphs from failure to thrive, to an all-consuming, insatiable hunger just a few years later. A month after receiving the diagnosis, we attended our first BCPWSA conference, smashed head-on into the towering brick wall of our reality. Driving home that evening we were silent, absolutely deflated, pinned down by heavy piles of crushing debris. But glimpses at the back seat, lit by passing streetlights, showed a sleeping angel. Introduced by a social worker at the BC Centre for Ability, Heather had written in her first email to me, "Hi and Congratulations. I will give you some of the advice I received, which was just to love that little girl and try not to let the fear override the joy of your new baby. Many children are doing so well and there is a lot of research happening that can really change their futures." I decided to go with that.

I know we are very lucky. The most bizarre, disturbing - and the most-feared - hallmarks of Prader-Willi Syndrome - never-ending, over-powering hunger; ceaseless food seeking; obsessive-compulsions; skin-picking - are, so far, (knock wood) absent. They're long over-due and probable, but for now our lives are minimally affected (knock on wood): we don't lock our kitchen cupboards, we leave food in plain sight, we don't give constant supervision in case she should acquire it in some stealthy way and cram herself so full it backs up, is spewing from her mouth as she tries to stuff more in and her stomach tears in several places because she doesn't vomit or feel much pain*. Fingers crossed and knock on wood.
* according to one study, Gastric Rupture and Necrosis accounts for 3-6% of deaths in PWS. The unsupervised eating binge usually occurs at a family holiday celebration, where everybody thinks somebody else is monitoring food intake. When everybody is watching, nobody is watching

Incredibly, our daughter tells us she is full, at which point she stops eating. No credit to us. She even magically limits herself to the 1200 daily calories her whacked-out metabolism runs on. The only thing I have to do is provide healthy food and limit bad choices: 1200 calories leaves very little room for treats, so they are a big deal, infrequent, stingy and savoured. Though there are troubling signs the transition may soon be upon us, so far we've had it pretty easy. Knock wood. (You'd think I was superstitious...)

The biggest challenge has been cognitive. In the giant Gelatin Mould of Life, learning, for her, is like wading through shoulder-high Jello to read the backwards writing on the bottom of the Pyrex bowl. But not to worry: it's strawberry Jello! It smells good! And it makes everything look so pretty, and pink.

Her sweet personality goes a long way: she's gregarious - especially to dog-owners - cheerful, fun, kind, naturally optimistic, brave and strongly attached. She connects deeply and opens her heart and her imagination to anyone who shows a fleeting interest, sharing her kooky world of witches, Hansel and Gretel, vampires, sharks, Terry Fox and his robot leg, bullies who recoil at the colour pink, and the ever-so-handsome Everly Brothers. Did I mention she loves dogs..?

There are some minor hassles and endless appointments: endocrinologist, opthamologist, orthopaedic surgeon; brace fittings, swallow and feeding studies, stim tests, nightly needles, tutoring, blah, blah, blah. She rolls with it, looking forward to the appointments like she might a play date, making a non-issue of the shots. A brace for scoliosis is the newest challenge. She hates it, but she endures it. During her daily one-hour break we rub her skin, give her a good scratching, scrub the stinky brace with Dr. Bronner's and alcohol. Switch out undershirts. Tickle, wrestle and hug.

She almost never complains, but I don't blame her when she does. For the most part, she smiles as she pushes her way through that thick Jello, eyes sparkling, patting every dog along the way, hiking her pants back up over her brace, and teaching me about bravery, gratitude, and enjoying life. If I had to pick between PWS and Downs, I still wouldn't choose either one. I would take away the yoke from her neck in an instant - but I would not change her for the world.

Sewing details here

Humatrope 1: Ingredients

Humatrope 2: Test Swatch and Scoliosis Brace

Humatrope 3: Foundation, More Brace

Humatrope 4: Lost for Words
Humatrope 5: Hello Little Girl in the Bullet-Proof Vest

Humatrope 6: Three Distractions
Humatrope 7: From the 13th Floor
Humatrope 8/Sewing Tip 8: Tassel Tutorial