Happy face

This one's for you, Big Mo: Today's entry is all smiling toads, pots o' gold and bales of cotton candy. So stereotypically Irish it's politically incorrect, Mo would rather eat her own eyeballs than think someone was feeling sorry for her.

She gets peeved when I include too many details about bad days on the blog, preferring instead I skim over the ugly parts and accentuate the positive.

So here goes: We won our battle with supplemental insurance and got sleek, small and lighter hearing aids for Hopesy. And they're pink! Photos to come. Hope resumed occupational therapy on Monday. It's not as many hours as we 'd like -- or think she deserves --but Michigan is budget-cut crazy, so we're grateful for her two hours a week of therapy.

She remains the undisputed, No. 1 Cutie.

... and livin' is easy

The first sign: Our laundry room has become the killing fields for small red bugs that come to smell my socks and die. Mo provides daily war dispatches, a la Christiane Amanpour: "I found five more dead ones today! They're getting closer to the food rack and the Clif Bars!"

The second sign: The calender. It's oddly full of stuff like parties, baseball games, family visits and vacations and conspicuously devoid of doctors appointments.

Yep. It's summer. We're proud and a bit wistful to report that Hope has passed her first year of special education. Cue the '70s stoner movie soundtrack; call the AM radio station 15 times and demand to hear "School's Out" again; toss all the toilet paper out the window: No more classes until September, baby!

For the past few months, Hope had some type of therapy every Tuesday, Wednesday and Thursday. Tuesday was group therapy for hearing impaired infants. Wednesday was at-home occupational or physical therapy. Thursday it was more group, this time for babies with special needs.

All were provided by the Intermediate School District. We're grateful for all of them. We were lucky to have some wonderful therapists who gave us great advice, encouragement and reinforcement. All seemed to really care for Hope, so we couldn't ask for much more.

We've debated continuning with private therapy over the summer. At some point, it's a conversation most parents of special-needs kids have. The ISD therapy typically lasts no more than an hour.

Our conclusion: Hey man, it's summer. Don't bogart the buzz. Crack another cold one and flip that Pink Floyd record.

Actually, we did some research, asked some questions and were advised by therapists to keep up with the exercises ourselves and enjoy the break. In taskmaster Mo's case, that means working Hopesy daily like a Red Army drill sergeant, until our little girl is spent ...

Encouragement

The past week or so around these parts have been filled with "avast, aghast, pity poor us" posts. All the facts are true -- tough questions from strangers, a bad sleep study, strange doctors -- but in sum, they may give the impression that times are tough. They're not. Hope is doing great.

She's been in physical and occupational therapy for more than a month and has responded well. I have to be careful what I say and avoid giving either therapist clever nicknames because they're readers. But it's safe to report Hope is a promising pupil. We worried about how she'd handle 30 minutes of stimulation, but so far, she has exceeded our expectations.

They come to our house on alternate Wednesdays and work on things like neck control, balance, tummy time and building muscle. Sometimes, that's through bouncing her on exercise balls or laying her on her tummy. Other exercises involve toys with bright lights. Eventually, therapy will expand to off-site visits for a group therapy session on Thursdays.

Two observations from the physical therapist have delighted us.

I see Hope running one day.

and

Socially, Hope is where she's supposed to be or even a bit advanced.

I think Mo almost cried when she heard both. Too often, our expectations have had to shift downward. It's great to have high hopes.




P.S.: The uber-cool photos above are from my brother, Steve. That's my sister, Beth, and Hope being enthralled by a Daisuke Matsuzaka doll. Steve's a great shutterbug. Thanks, dude.

P.P.S: Happy birthdays to two of our favorite ladies: Mo's Leap Year sissy, Molly, and my dear ol' Momito. We love you guys oodles.

A few notes about collaboration

We have a few arguments in this house about blog entries. I write 'em. Mo edits 'em. Initially, Mo felt jealous, claiming I spent more time with the blog than her. She dropped that when I started spending more time with her.

Lately, the friction stems from our philosophical differences as journalists. I want to tell rip-roaring yarns that entertain, enlighten, provoke and even tickle the heart. She keeps insisting they be factually accurate.

Whatever, lady.

Honestly, we walk a tight line. Our first priority is protecting Hope. There are some scary possibilities with CdLS that don't need to be announced and prejudice anyone's view of her. But we also have an opportunity to spread the word about a syndrome most don't know exist.

So there are many chats about how much to say, when and how. I usually err toward letting it rip, brutal honesty and endless chin scratching that paints me in the best possible light. Mo prefers a judicious, "We went to the doctor today and here is what happened" approach. At times, the chasm proved so great that I threatened to (a) Start a secret, alternative blog using pseudonyms and a made-up condition where I could finally be free to vent inner demons and philosophize (b) Kick her off the blog about her daughter or (c) Withhold kisses until she is a nicer editor who lets me write what I want.

Her response: "Whatever, loser."

That's my lady!

We've bandied about compromises. Mo doesn't want to alternate entries. I suggested we approach the blog like an annotated study Bible: I'd set down divine prose and she'd make persnickety notes in adjoining, red-font paragraphs to offer her claim to the "truth."

Until then, we're stuck as collaborators, in more ways than one and must make it work. In that spirit, here's the latest, in prose to make Mo proud.

Monday, Mo took Hope to the eye doctor for a routine examination. Hope is doing well. She can see well. She does not have cataracts. Her eyes were dilated. She tracks motion well. The doctor is a nice old man. He gave tips on how to massage the balls of Hope's eyes to ease what appears to be a blockage in her tear ducts causing excess eye boogers. We will seem him again in a few months, but so far, so good!

Last week, Hope began occupational therapy. She will have occupational or physical therapy every Wednesday at our house and, when she is big enough, will go to group therapy Thursdays with other tots. It is part of Michigan's Early On intervention effort for special-needs children.

The therapists work on such things as "tummy time," neck control, feeding and eventually crawling and arm control. One of the exercises involves a helium balloon. You put it near her to encourage eye tracking and playing with her arms. She had a jolly good time Monday night with a Valentine's Day balloon. We held her, she giggled and followed as it gently bobbed and swayed. She reached for it repeatedly, but didn't quite bat it with her hands. Oh well. A good time was had by all. We also worked on an exercise with a rubber pilates ball. She lays on it with her tummy and we gently roll her. That encourages neck control. She did a good job.

Our sleep study last week was postponed until Feb. 19 from Friday. Other than therapy on Wednesday, it is a quiet week.

Over and out.

Reality returns

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I put my parents on a plane back to Maine today. It's been almost 20 years since I left for college and I've perfected the routine: No awkward moments, swallowing tears, blubbering sweet sorrows or speechifying; just give 'em a hug; honk the horn at the curb and hit the gas. I save my tears for later.

They were here for five days and it was great. Both have a great rapport and gentle manner with little Hopesy. I took the time off work and it was nice to soak in the goo-goo ga ga time, celebrate Penguin Awareness Day and pass off a few marathon feedings to good ol' Mom. (Free marriage advice: If you and your spouse want to reconnect for a first night alone in three months, "There Will Be Blood" is not a great date movie. I know. It's shocking.)

But sure as dawn, reality returns. So today it was back to work, and Mo was back for Round Two with the inscrutable Dr. Spitenup, the pediatric gastroenterologist who wears grape-flavored gloves, takes no measurements and dispenses diagnoses through a rapid-fire series of questions that requires us to quantify the problem through percentages. Mo told him Hope still has 71 percent happy days, but falls asleep midway through about 40 percent of her feedings and seems about 17 percent less interested in milk the past two weeks. Dr. Spitenup told Mo that he now realizes Hope has red hair and told her to come back in six weeks.

Good ol' Dr. Spitenup. I wish I could find a dentist like him ('My teeth feel 98 percent clean. See you later!')

Tomorrow, Mo finalizes the last of an exhaustive process of meetings and paperwork to enroll Hope in Early On, a state program for developmentally delayed children that should connect her soon with an occupational therapist to work on feeding and other issues.