Settling In

7 Apr 2007

We’re playing lots of games: my daughter inherited my game-addict gene. Good news for my husband, who is decidedly not a game lover; now he’s off the hook.

My daughter’s spirits are excellent. Her capacity for empathy is higher than I’ve ever seen. She’s friendly and interested, upbeat and even-tempered. I don’t detect a trace of resignation or irritation at her lot. She’s very much enjoying her brother and sister (and all the game-playing). We’re all enjoying her.

I’m amazed at how well she moves. Holding on to a support with her left hand, she can briefly stand unaided. She moves her own right leg when walking (with significant support; as her father described, it’s like dancing while hugging). She cuts her own food, even when it’s insanely frustrating; I’m resisting the urge to step in before she asks for help.

Compared to my time with her in the hospital, this is a party. This is like being in heaven. She was a very sick person in the hospital; now she’s a normal person having relatively normal days, albeit bald and in a wheelchair.

Our fancy two-person shower cabin has finally come in handy: she’s able to sit on one of the ledges under streaming water thanks to the hugely repositionable showerhead. She wants to shower on Mondays, Wednesdays, and Fridays and have the weekends off to relax :-). My husband travels a lot, so we may have to deviate from that schedule (I can’t get her into the shower on my own). But it’s a great plan.

News for the home team (who else would want to know this?): she pooped once yesterday and once today. She’s taking one Colace in the mornings, no Dulcolax; so far that seems to be a good mix, though we may be coasting on past pill ingestion.

She’s taking two children’s chewable multivitamins each morning (good for about half her daily needs). Thank goodness she likes the flavor!

We weighed her this morning: 60.7 kilos (133.5 pounds). According to her, that’s up 2.7 kilos (6 pounds) from 2 weeks ago. She wasn’t too thrilled about that. We talked some about her metabolism being out of whack and it not being entirely up to her whether she gains more weight. Hopefully her mobility will continue to increase, which will help. She’s very interested in eating healthily.

Tonight her brother wheeled her into the kitchen so she could keep me company while I was cooking dinner. She asked if there was anything she could do to help. I couldn’t think of anything; her wheelchair is low, the counter is high. She suggested she cut up the potatoes. As you can see, it worked swimmingly. She cut up a whole kilo.

(She gave her permission for the photo to be posted.)

A Day in Nijmegen

10 Apr 2007

All went well today at UMC St. Radboud. We mailed off several forms—proof of residency for the insurance company, subsidy request to the city for a stairwell chairlift and bathroom handgrips, request to determine our eligibility for in-home services, request for a handicapped parking permit—on our way out of town. We breezed down the highway and arrived at 8:45 AM, 30 minutes ahead of schedule (which I vastly prefer to arriving with, say, two minutes to spare). Two friendly and capable technicians inserted an IV in my daughter’s right hand—her port-a-cath is insanely deep and seems to have twisted slightly, so after one attempt they abandonded that idea—and drew 8 vials of blood. This all went fairly painlessly; the IV went in in one try, though her blood dragged its heels on the way out: it took a good 30 minutes to fill all 8 vials.

We proceeded to the MRI chamber where, much to my surprise, my husband and I were given earplugs and allowed to sit next to our daughter’s feet during the procedure. She listened to her Beatles CD (only slightly better than nothing, she said, because the machine is so loud); I rubbed her lower leg. I was practically inside the machine by the end; it was a full craniospinal MRI, and every few minutes her bed inched inward. A second welcome surprise was the duration: just 45 minutes, compared to 90 minutes for the same procedure in the US back in the fall.

With 3 hours to spare before our next appointment, we ambled back to the hospital restaurant above the main entrance. After lunch we took a stroll outside; alas, the temperature remained disappointingly low despite a forecast of near-summer temperatures. (Folks back in NC: don’t get too excited. The average daytime high in Holland in August is 71 F.)

We met with the oncologist and neurologist at 2 PM; the rehabilitation specialist joined us as they left about half an hour later. She was followed by the endocrinologist. Each examined my daughter through the lens of his or her field, the neurologist softly hammering reflex points and sliding fingers across my daughter’s field of view, the rehabilitation specialist asking her to squeeze fingers and bend legs.

We had a spate of questions for each doctor. Alas, our biggest question—what does the MRI show, what’s the plan from here, and how does it affect her prognosis?—remained unanswered. The entire team will meet later this week to discuss their assessments of Meghan and today’s MRI (and how it compares with the MRI from early March), and to formulate a treatment plan. We return next Tuesday to discuss this.

The rehabilitation specialist will contact Blixembosch, a well-respected rehab center that conveniently happens to be a 15-minute walk from our home, about getting her in for intensive rehab therapy and schoolwork. This is very exciting: she has made so much progress since I last saw her that I’m certain she will be able to walk again with the right training.

We did manage to eliminate another couple of pills from her daily cocktail: Septra (antibiotic) has been reduced to once per day 3 days a week (down from twice a day), and fluconazole (antifungal) has been eliminated. We expressed our concerns about Seroquel, an antipsychotic formulated to treat schizophrenia that is prescribed more often as a sleeping aid than for its intended use, and Prozac. The psychiatrist will review those to determine the best course for getting her off them. In the meantime, having heard the background on Seroquel, my daughter liked the idea of taking just her Lunesta tonight. We’ll see how she sleeps; my guess is just fine. Ultimately we hope to get her off all the sleeping aids, but she’s almost superstitious about them after 6 months of nearly continuous use. No point in inducing psychosomatic insomnia just from the idea she isn’t taking her sleeping pills. Slow and steady wins the race.

She weighed in at 61 kilos (134 pounds). The endocrinologist and rehabilitation specialist made some suggestions for minimizing her weight gain, which she took right to heart: at dinner she declined a second burger though she wanted it, and filled up on carrots and cucumber slices instead. We were happy to hear them tell her the biggest culprit can be sweetened drinks, and to also caution against wanton diet soda consumption (justified or not, I’m wary of artificial sweeteners). My daughter still feels she has trouble drinking water, but she can drink plenty of things with the same viscosity, which leads us to believe that taste may be the biggest actual stumbling block.

Macaroni and Yahtzee

11 Apr 2007

That pretty much sums up our day. About a thousand games of Yahtzee and lots of looking forward to the pan of macaroni with ground beef and vegetables our neighbors brought us for dinner. It’s one of my daughter’s favorite meals.

We started a food journal today. Our plan is to record what my daughter eats for a week, estimating calorie intake, then weigh her and see if she’s gained any. If so, we know how much is too much and we can adjust downward. If not, well, great!

Her heart is in the right place, but her impulsivity will make it hard for her to follow through if she really does need to cut back on eating. The steroids aren’t helping her; they’re notorious for increasing appetite. Today’s consumption:

Breakfast (390 kcal)
    tangerine (25 kcal)
    100 mL 2% milk (45 kcal)
    2 bowls of Special K and milk (320 kcal)

Lunch (705 kcal)
    tangerine (25 kcal)
    200 mL Yoki fruit and milk drink (130 kcal)
    3 rice cakes (100 kcal)
    1 slice cheese, jonge kaas (200 kcal)
    grillworst (120 kcal)
    peanut butter (100 kcal)
    strawberry jam (30 kcal)

Snack (75 kcal)
    spiced tea (50 kcal)
    cherry tomatoes (25 kcal)

Dinner (1215 kcal)
    350 g macaroni casserole (800 kcal)
    slice brown bread with butter (100 kcal)
    salad with pine nuts and balsamic dressing (150 kcal)
    grated cheese (120 kcal)
    baby carrots (25 kcal)
    30 mL orange juice diluted with 170 mL water (20 kcal)

Bedtime (45 kcal)
    100 mL 2% milk (45 kcal)

TOTAL: 2430 kcal

That’s more than enough for someone of her stature at a normal activity level; in her sedentary state, she probably needs about 1400 calories a day. But we’ll see how the week goes.

We showered (it gets easier every time) and got on the floor to do several exercises and stretches, expanding on the exercises we did on Monday.

She pooped about 6 hours after taking one Dulcolax this morning. (No poop Sunday, Monday, or Tuesday.)

She slept fairly well last night. She said she woke up at some point and had a little trouble getting back to sleep, but eventually she did. She opted for just the Lunesta again tonight.

It’s intense, but not vexing. She’s very flexible and accomodating, very pleasant in her requests (“when you have time, could you . . .”). If I say I need to do something else, she readily amuses herself by doing word puzzles or playing Yahtzee on her own. But I’m used to several hours alone each day, and I have yet to work my regular routine back into my days. Between caring for her and the holiday weekend, housework has been mostly on hold. I put it down to growing pains, settling in to a new situation. And I’m truly grateful for this time with her; however this all turns out, I’ve been given the opportunity to savor every moment now. I’ve been spared the fate of looking back and wishing I’d been more present when I had the chance.

April Flowers

16 Apr 2007

The weather has been phenomenal the past several days: sunny, high 70s, a light breeze. We’ve taken long walks each afternoon; my daughter enjoys looking at the flowers. There’s never been an April this warm in Holland, they tell me. We’re seeing May’s flowers already. Maybe it’s global warming; whatever’s causing it, it’s glorious.

Today was our first “normal” day—last week was a holiday week for our youngest two—and it went quite well. The big test comes Wednesday, when my husband leaves at the break of dawn for a 5-day trip to California. We’ve moved the sleeper sofa to the living room (leaving us about one square inch of visible floor). We’ll convert to bed baths on Wednesday and Friday instead of showers. I’m a little nervous about it—I’m not sure I can get everyone ready for school and for bed on time—but I guess the worst that can happen is that for five days, we’re fifteen minutes late to school, we eat frozen pizza twice a day, and my kids pass out on the sofa in their clothes watching Sponge Bob every evening. (On second thought… it may be my doom scenario, but my kids would think they’d landed in Nirvana.)

My daughter is still interested in cooking. She singlehandedly (literally and figuratively) made the salad for Saturday’s dinner: ripped off the iceberg lettuce (her favorite kind) into a bowl, sprinkled pine nuts over it, measured out olive oil and balsamic vinegar and stirred them, poured this over the salad.

We’ve noted six days’ eating so far; my daughter is averaging 2000 calories per day. We’ll get her weight again tomorrow and compare with last Tuesday. She’s noticing new stretch marks, so she’s probably still gaining. I’m emphasizing healthy choices and moderation (hi Dad :-) ); no starvation-deprivation regimens here, even if she keeps putting on weight. There are more important things.

She’s completely off Seroquel; it was a painless transition.

The Poop Scoop ———–

(The squeamish among us may wish to skip ahead now.) She’s taking Colace mornings and evenings, and Dulcolax as needed. The Colace is milder and helps keep her poop soft; the Dulcolax makes her colon muscles contract and essentially forces a poop to happen. To date:

1 Dulcolax Wednesday AM : hardish poop 6 hours later, softish poop Thursday
1 Dulcolax Saturday AM : softish poop 6 hours later
1 Dulcolax Monday AM : one normal poop unit followed by lots of very runny poop 8 hours later

The pattern thus far is converging on a Dulcolax, a good poop, a day with no poop, another Dulcolax. This works fine, but I wonder if she’s become dependent on laxatives. Will her body someday be able to poop on its own again?

End of Poop Scoop ———-

We had two appointments today, both home visits: the first from Stichting MEE, an organization that supports families in navigating the myriad of health care resources, and the second from CIZ, the agency that determines eligibility for government-funded in-home services (think help with showering, dressing, and so forth). We hope to get someone a few hours a week to lessen the load on me when my husband is on the road.

The person from MEE will follow up on our request to the city for a stairwell chairlift. The subsidy is income-based and there is a limit, but we haven’t been able to find hard numbers in the city’s information. Chances are we’re above the income limit, and if so, we’d like to know so we can skip waiting two months for the city’s answer and contact a chairlift company directly—or buy one secondhand, if we can find one fitted to our particular stairwell. New, they cost € 3,000 to € 6,000.

Our insurance company is stonewalling. They have to accept our daughter eventually, but they hope to make “eventually” later rather than sooner. First they said they’d be satisfied with proof of her registration as a city resident. Now they want to wait on her residence permit. I understand their reluctance—we’re already two hospital visits, an MRI, and several prescriptions into the honey pot—as I’m sure they understand our ardor (we’re already two hospital visits, an MRI, and…).

We have an appointment at Blixembosch rehab center next Monday; they were unable to move it any earlier (we called). Our CIZ visitor said Blixembosch usually acts pretty quickly, so hopefully our daughter will be in rehab within two weeks. School may take longer; as we learned today from our MEE visitor, she’ll have to apply to the school associated with the rehab center, and the approval process can take 6 to 8 weeks. We hope the rehab center will be able to help us speed that up.