Parade

Monday morning a parade of neighborhood kids visited Steve with a welcome home gift.


Awesome neighbor and friend Meghan had organized the creation of a special bowl for Steve. A giant caterpillar, made up of fingerprints of our young friends, marches across the hand-painted bowl. Their names are underneath each section.

They also gave him bags of candy to fill the bowl -- sweet reminders of the love that surrounds Steve and our family!

Kick the Damm Spot

For almost four years, Cooper has been a member of the Dolphins soccer team.

Of course, all the parents and siblings are members of the extended team. We are especially blessed with a great group of parents.

Together we've watched our boys grow from chubby-cheeked preschoolers to long-legged second-graders. We've celebrated new siblings and mourned the loss of grandparents together.

We all trust one another to chaperone sleepovers and to drive kids to and from practices and games.

The Dolphins family, led by Coach Phil Mango and Jen, and other close friends have organized an amazing fundraiser to benefit Steve and our family, to help pay for growing medical costs. (Proceeds will also benefit Frisco Family Services, an excellent social services organization.)

The Kick the Damm Spot event is scheduled for Saturday, June 6, in Frisco. (You can read more about it here.)

Kids are invited to gather pledges for every goal they can kick in three minutes. So, if a child gets a pledge for $1 per goal, and she kicks 15 goals, she would collect $15 from the person pledging.

Steve and I are overwhelmed by the time and effort already devoted by the Kick the Damm Spot team. They are putting together a really exciting day, with vendors, silent auction and prizes for the kids who participate.

If you are interested in helping with the event in any way (signing up your child or entire soccer team, auction donations, sponsorships), you can contact Phil Mango at PJMango@midamerican.com.

If you would like to sponsor Cooper or Katie, who will both be kicking in the event, you can e-mail me at tyradamm@gmail.com, and I'll fill in his or her pledge card for you.

Reunited

Sometime yesterday UT-Southwestern lifted the restrictions on visiting children -- just in time for Cooper and Katie to visit after school today!

We have a fun evening planned -- playing Cinderella's Enchanted Slipper Game, eating dinner, watching a movie, reading bedtime stories. And lots of cuddling!

No falls, but close calls

Steve's left side was worse today than even yesterday. With that, his mobility is worse, too.

He didn't fall, but there were some frightening moments in transit. I'm using all my strength to catch and hold him when he falters. Then he steadies himself and we keep moving with tiny baby steps.

We were able to get him from the bedroom to the dining room, where he worked from about 8:15 a.m. until 6 p.m.

Seriously.

As awful as the location of this tumor is -- and believe me, it's awful -- we still are incredibly thankful that he retains cognitive and reasoning ability. He's able to produce the most detailed Excel charts and tables and graphs I've ever seen.

But still, the tumor is in a terrible spot, and we can only assume at this point that it's the tumor that is causing his left-side decline. Even with the high dose of Decadron, he's losing ground daily.

Dr. M is concerned, of course, and has started the process to get him admitted for inpatient physical rehabilitation at Zale Lipshy (the UT-Southwestern hospital where Steve was unofficially diagnosed, back in December 2007).

The medical staff has accepted him. Now we're waiting on a bed pending insurance approval, which should come Wednesday or Thursday.

While a rehab patient, the staff will evaluate his current abilities and needs, and we'll set goals for discharge. He'll work with occupational and physical therapists and other caregivers as needed. I'll spend much of the day with him, too, to learn how to best care for him at home.

He'll stay overnight, which will be hard on all four of us, but we're all focused on the goal of Steve's safety at home.

Dr. M told me that she thought his stay would be for about a week. I expect we'll know more specifics after he's admitted and evaluated.

I explained to Cooper and Katie this afternoon why Steve will return to the hospital. There's a chance they'll come home from school tomorrow, and he'll already be at Zale.

When I was tucking Katie into bed tonight (the first of multiple tuck-ins), I reminded her about the upcoming hospital stay and asked if she had questions. In reply she told me that Daddy would feel a little better. And she said that they would take his tumor out. I reminded her that they can't take it out. She gently insisted that they should.

*****

Today was another day that wouldn't have been possible without the help of many kind souls.

Betty stayed with Steve during the day while I attended a parent-teacher conference, conducted a client interview and had my own doctor's appointment (just a check-up). She also picked up Katie from school and helped Cooper after school.

Kerri brought a plate of sweet treats (with contribution from Kristie). Carol brought homemade chicken stock for Steve. Melissa delivered comfort food for dinner. Jeff came over to help me lift and move Steve. Sharon spent her free time tonight helping with the whole nighttime routine, even allowing me time to run with Liz and Melanie.

I'm always comforted by the help -- and by how Cooper and Katie respond. They have learned to be flexible and to accept help from others.

When Katie wakes up at 6:30 a.m. and is told she's going to the Smith house for the day, she doesn't balk or cry. She accepts and embraces the change in plans.

Cooper loves to listen to his Daddy read him bedtime stories, but if Steve's voice is too weak (like tonight), he's happy for me or one of our trusted helpers to read to him instead.

Especially in these most trying times, we are reminded of our infinite blessings. We are thankful for the joy that peeks and sometimes bursts through when we least expect it.

Early morning fall

Today was difficult.

Steve fell in the bathroom around 5 a.m. (Waking to the sound of your one true love falling to the floor is one of the most horrifying sensations.) He hit his head and parts of his left side.

After I found no obvious signs of broken bones or cuts, we started working on a plan to get him up on his feet. Steve did his best to move his body around, but nothing was working. Our old strategy isn't compatible with the current weak state of his left side.

I googled "how to lift someone off the floor" and found a bunch of warnings -- don't attempt to do this at home unless you're trained. I found one that offered hope, but we soon realized his left side wouldn't support any weight.

So I called 911. The Frisco dispatcher is always calm and reassuring. A few minutes later, the fire truck and ambulance crews were at the front door.

Six guys crowded into our bathroom to assess the situation, take vitals and help. Even in his pain and discomfort Steve was joking a little.

They eventually got him on his feet and straight to his walker. Steve decided that he didn't want to be evaluated in an ER, so the EMTs left.

They were here about an hour. The trucks' lights flashed in front of our house the entire time. The guys moved in and out the front door with radio noise. Cooper and Katie never stirred once. In Katie's case, I think an angel must have kept her eyes and ears closed. She's our early riser, often beating the alarm clock.

We know we can't and shouldn't shelter them from every moment of this journey. But we're thankful to keep them sheltered so far from the image of emergency vehicles in front of our house.

Steve stayed in bed most of the day. He felt great pain in his back. Plus some of his kidney stone pain returned. With the help of pain meds, he took a much needed long nap.

In the meantime I visited with Dr. M's group on the phone plus our previous home health physical therapist.

The physical therapist is scheduled to evaluate Steve at home late tomorrow afternoon. He will help determine what Steve can safely do and teach me how to help him with transitions and movement.

Dr. M is working on some other solutions that we'll discuss more Tuesday.

By late afternoon, Steve was able to move from bed to the kitchen table. (We ate a delicious dinner delivered by Melinda, who read my Facebook/Twitter update early this morning and, like so many of you, offered help right away.)

He's back in bed now, definitely feeling some discomfort from the day but in good spirits considering what he's endured in just the last two days. (An exciting episode of 24 always helps.)

My own spirits were lifted by treats from Liz, Kris and Holly and notes and calls throughout the day from other sweet friends.

And someone special left a giant basket of arts and crafts activities on the front steps, discovered when Cooper came home from school. I just wish I'd had my camera handy to capture their joy.

Nothing could beat the joy that Steve and I felt at the dinner table tonight, though.

Steve asked Cooper what his favorite part of the day was. He answered, "Getting to see you after school, Daddy."

And then Cooper held our hands as he said our mealtime prayer:

God is grace

God is good

Let us thank Him for our food

And please help Daddy

And everyone else in need.

Amen.

Disneyland, Day 3

We had early entry privileges again Sunday, but we didn't need to be first in line this day. We mostly wanted to ride our favorite rides again and hit a few new ones.


We spent the first part of morning at Disneyland, riding Alice in Wonderland, the teacups, Space Mountain (just me and Cooper), Buzz Lightyear, Star Tours (just me and Coop), Astro Orbitor and the Haunted Mansion. We were among very few families for the first show at the Enchanted Tiki Tiki Room. The animatronic birds' songs have played off and on in my head since my first Disneyland trip in 1986. Now both Cooper and Katie sing them from time to time.

We said goodbye to Disneyland and headed to California Adventure. We caught the first show of Turtle Talk with Crush then headed to Paradise Pier for the Golden Zephyr, Mulholland Madness, Jumpin' Jellyfish and Sun Wheel, a giant Ferris wheel that affords beautiful views, albeit through a cage that obscures attempts at photographing the scenery.



And then our tour was over. We returned to our beautiful hotel lobby, turned in the rented scooter and waited for our car. Katie fell asleep on the drive to Ontario and slept almost the entire time while we picked up boarding passes, checked luggage, went through security and waited at the gate. She did not sleep when we were taking off. She did cry and sometimes scream for about 10 minutes. I had visions of appearing on cable news channels as the family with the unruly 2-year-old who gets kicked off the plane. Of course, she had reason to be fussy. She hadn't eaten much in three days and was still struggling with a stomach bug. Our flight attendant was the most sympathetic we've encountered in almost seven years of flying with children. She let me unbuckle Katie from her car seat, and I was able to hold her until she settled.

The rest of the flight was uneventful, though late. We landed, picked up luggage, took a bus to our car, drove to Love Field to pick up Aunt Ami and pulled into the garage by 11:30 p.m.

We loved our getaway, and we've been talking and reminiscing about it ever since. In fact, Katie told us tonight that she's going to keep growing big so she can ride Space Mountain.

More photos from the day are here.

Disneyland, Day 2

Thank goodness for the two-hour time difference between Texas and California. We had no trouble waking up in time to get ready for early entry on Saturday, our second day at Disneyland.

One of the newest rides at both parks is Finding Nemo Submarine Voyage, which took the place of the old sub rides. The wait is notoriously long, as the ride allows just 900 or so guests through an hour, and the ride lasts 13 minutes. To ride without spending hours in line, you need to be among the first in line. So, we were the actual first people in line for the whole day.

While we were waiting at the gate, a cast member asked the family next to us if they would open the park. Of course, they said yes. Cooper, who is the boldest member of our family of four, asked what they were doing and then asked if we could join, too. The family was nice enough to share their honor, and the cast member agreed.

The eight of us entered before anyone else and led the countdown from 10 to 1. Then we screamed, "Let the magic begin!" What an exciting way to start the day.

We rushed to Tomorrowland and grabbed the first Nemo sub. Honestly, it was a good ride but I'm glad we didn't wait in the heat for it -- it wasn't that spectacular.

That morning we also rode (sometimes with Steve):
Mad Tea Party
King Arthur Carrousel
Jungle Cruise
Pirates of the Caribbean
Tarzan's Treehouse
Indiana Jones Adventure (just me and Cooper -- it was his favorite ride of the weekend)

Then we ate breakfast at the Plaza Inn. This was the long awaited breakfast with Minnie and friends. If you ask Katie how breakfast with Minnie was, she'll tell you, "Well, she didn't eat with me. She just loved on me." I hadn't explained in advance that the characters wouldn't sit down and dine with us, an important detail when you're 2. Nevertheless, we all enjoyed the meal and hugs.


After breakfast we went to the Golden Horseshoe to enjoy Billy Hill and the Hillbillies, an amusing country music/fiddling/comedy show.


Our next stop was California Adventure. Katie loved Monsters Inc. from the day before and wanted to show Daddy. We also fit in the Muppet Vision 3-D movie, fun at a Bug's Land and Soarin' Over California. Cooper and I braved the Grizzly River Run and got soaked -- perfect timing before heading back to our hotel.

After naps all around, we went swimming in the hotel pools, enjoyed a special dinner at Catal in Downtown Disney and settled in for an entertaining story time at the hotel. It didn't take long for Steve and the kids to fall asleep, and I ventured back out to the parks for souvenir shopping.

More photos from our fun day are here.

Disneyland, Day 1

With two and a half days at the two parks, we had time to spread out the rides and shows. I used a Disney trip-planning software program and a book I've had good luck with before to plot out the best order for the rides. The trick at any Disney park is to reduce the amount of time you spend waiting in line, usually achieved by being at the gate well before the park opens and being willing to use the afternoons for shows and/or naps.

In the morning, we fit in (Steve sometimes watched from the sidelines):
Peter Pan's Flight
Dumbo
Matterhorn Bobsleds (Katie's first real roller coaster, which she declared "awesome")
Many Adventures of Winnie the Pooh
Chip 'n' Dale's Treehouse
Buzz Lightyear Astro Blasters


Then we headed to Disney's California Adventure, the adjacent park. We watched the stage show Aladdin, then Steve rolled off to the hotel for a nap. The kids and I braved Monsters Inc. Then Katie fell asleep in her stroller.

Cooper hit A Bug's Land and rode some small rides by himself. The operators insisted an adult go with him on the bumper cars, but I couldn't abandon Katie and her stroller, so a cast member was Cooper's passenger.

Katie woke up while we were in line for Playhouse Disney Live, an interactive stage show with dancing, clapping, bubbles and falling streamers. We then picked up Steve from the hotel and returned to Disneyland for the afternoon parade, Splash Mountain (just Cooper and me) and a cruise through Pirates of the Caribbean.

We were all wiped out and ready for bed by the time we returned. Katie wasn't feeling completely better yet (and wouldn't for the entire trip) but managed to stay cheerful if not sometimes quiet (for her, at least).

For the day's photos, click here.

Disneyland, arrival

As you may recall, the day we headed to the airport for Disneyland, Katie got sick in the car and again on the flight. She worried aloud for a while about Minnie Mouse seeing her "all dirty." I assured her she could bathe before we met Minnie.


When we walked off the plane and into the terminal, Katie asked, "Where's Minnie?" She seemed certain that the giant hair-bowed mouse was going to meet us at the gate.


After gathering our bags and finding our driver, we settled in for the drive from Ontario to Anaheim. Both Cooper and Katie fell asleep in the car. It didn't take long to wake them once we arrived at our Disneyland hotel.


We opted for room service for dinner that night. The kids cuddled up quickly for bed, wearing their personalized visors, gifts from a group of Betty's friends.