Some winter fun and a little aloha!

The boys and I went on a crisp but sunny bike ride this morning--it was perfectly mild, strangely typical of this winter. We used our snowblower exactly once and shoveled the front walk only a handful of times! Now there are bike-riding days in February: hallelujah! Max is feeling the goodness:

All winter long, we've had blessed little sunshiny days for zoo trips

and lakeside hikes.

And yet we've had the best of both worlds: we've also enjoyed plenty of "Wisconsin winter moments:"

UW hockey,

snow hiking,

ice fishing,

sledding,

hanging out in the neighborhood warming hut (with my dad, ah yeah!),

skiing

(Zach was a natural on his first ski trip!),

ice skating (Michael's first time!),

 okay, LOTS of skating, 

 and more skating!

(This is Eric on Lake Monona--see the state capitol in the background?)

Seriously. We're ice skating junkies! I don't have skates--I run around on the ice in my boots, pulling the non-skaters in donuts on a sled. Jacob helped me out yesterday:

 

The kids skates (or "ice skaters," as Adam calls them) were the best investment of the year: the outdoor rinks are absolutely free and incessantly fun.

We interrupted our winter activities for a trip to Hawaii, where Eric attended an ophthalmology meeting. He has been a ROCKSTAR with his studying this year, putting in no fewer than 3 hours of studying after work each night, but usually much more. It was refreshing for him to change his studying venue from here

to here!

The boys and I hit the pool at 7 a.m. the first day, and we spent at least a few hours each day poolside

or beachside!

A whale-watching cruise,

snorkeling in the open ocean,

enjoying the resort slides (see, Eric relaxed, too!),

hiking around the island,

and a 5-hour zip-lining tour

 

were especially memorable times.

Also, how cool is this? I ran into my old BYU intramural flag football buddy Rachel in Maui.

Mahalo, Nana and Grandpa, for a truly awesome time!

(Michael and Adam stayed home with my dear friend Vanessa and her family. Vanessa was a peach to them, and to me, too! We returned to find everything in perfect order, plus several meals and baked goods in the freezer! Her kindness alone deserves an entire blogpost. WOW.)

 After the Hawaii trip, we prepared for an exciting week of birthdays and visitors! Zachary and Jacob celebrated their sixth annual "Brothers' Day," the birthday that they share:

This was an especially notable birthday for Jacob, who turned eight and became eligible for baptism. Our family and friends made the occasion even more special by participating in Jacob's baptism:

What a light he has! I know that his goodness will influence many throughout his life. It's blessing us now.

 

For a special baptism celebration, Eric's parents took Jacob and his cousin Spencer on a trip to upstate New York. Jacob requested the trip so that he could see the Baseball Hall of Fame in Cooperstown,

 but he was even more fascinated with the church history sites that they visited.

 Clearly, it's been a special, special time for Jacob.

After all these events, we've settled back into our normal routine: Scouts, piano, school, basketball, and home activities. Jacob's class built and presented a model of Madison at the annual Terrace Town exhibit downtown. (Also: He and I have also spent several hours building his pinewood derby car [phew--it's done!].)

Zachary loves his basketball practices and games. (Also: Zachary is a self-proclaimed hip-hop dancer. "I know TONS of moves!" he told me recently.)

Michael and I have been preschool-ing, playing music, and crafting (here he is at Vanessa's for a darling decorating party she threw). (Also: Michael explained to Adam this afternoon: "Jesus loves people. You are people, and I am people. Everyone is people, and Jesus loves us all!")

Adam has been busy doing all sorts of experiments! (Also: lately Adam and his Superman figurine have been inseparable. He's named him Nephi. Batman is called Sam. Oh, and there's a rubber duck, Quacky.)

And Max has been growing up, thrilling in being part of the gang. (Also: his favorite expressions are 1. a roar and 2. "OOOOO!")

And now, if you've read this far, you must really love us. You deserve a virtual Valentine in return:

I thought that Jacob's personally messaged Valentines were adorable. Too bad they can't fit "Isn't this a fun experience?" on a conversation heart candy.  :)

Closing up 2011

It is wintertime, but Wisconsin is not that cold. We can play outside almost any day, and it's only snowed three times. I'm loving it! One of the only cold nights was the night of the Firemen's Parade. Eric blasted the heater in the van, but Jacob, Zachary, and I braved the night wind: 

The boys and I have spent other days hiking,

 exploring new places (including a cool vine that the kids could swing from),

and ultra-hiking (we got exploring this day and ended up going on a 2-hour excursion)!

This is our tenth Christmas as a family, and the first time that I haven't send Christmas cards. :( It was just too much this year. We did go caroling, though, much to the delight of our neighbors.

 The boys had fun, too!

One perfect Christmas celebration was attending "The Gift of the Magi," put on by a theatre group in Spring Green. A friend called me and asked me to come, but I knew that Eric wouldn't go for it--he needs to study at night (at least three hours every night). So I was stunned when he texted me and said that he wanted me to go. When he arrived home just minutes before I was to go, I thanked him for his kindness in letting me go do something so wonderful. "Wait...you're not taking the kids?" he said. Uh...by that time my friend was on her way to pick me up and so I just went. "Put them down at seven!" I called out to Eric. It was the first time that I've been on a girls' night since Eric started his residency two and a half years ago! 

Eric and I also had a few chances to perform together this month. This photo is from Eric's work Christmas party--I was playing the piano off to the side while he and another resident jammed on the saxophone and ukelele! That was a fun night. We were so worried about our babysitter at home that we weren't paying attention and ran out of gas on the way home--nerdy! Of course we ended up getting there later for the babysitter!

Here is a tender picture. This is at the graveside service for the mother of one of Jacob's friends. Can you see the doves? They released four doves after the service. The mother died of cancer, leaving a second-grader and a kindergartener. Jacob has been in class with the little girl for the past two years. After the funeral he said, "I went there wondering if she [the mother] was a good person or a bad person. Afterwards, I knew that she was certainly a good person." I agreed.

Of course Christmas with the boys was magical. Eric bought nearly every gift this year (even his own!). For the first time ever, I didn't make any homemade gifts. Everyone survived.

I have to brag about my little sister, though, who did make some very thoughtful homemade packages for the boys. One favorite: felt superhero capes and supplies to decorate them. How cute is that?

And that's not all! She also made me this mother's necklace--isn't that amazing? I didn't know that she knew anything about jewelry-making. Sweet Sandra, you inspire me.

For the week following Christmas, we went a few places--ice skating, the library, shopping. But what the kids have really wanted to be doing is playing, playing, playing, all day long! 

Anything can be a sword--yardsticks, spatulas, spoons--but now Adam has his own sword-looking sword!

This is the boys' daytime "sleepover" in the dining room. 

And we'll close with a shot of Michael and his favorite gift, a play shaving kit. He's used it every day since Christmas!

What a joyous time! We're looking forward to all that 2012 holds.

People are kind

Today I went to the church to practice the organ, but the key wasn't in the bench where it belongs. After scouring the chapel and calling half a dozen people about it, I came home discouraged. Much to my embarrassment, I found the organ key--on my key hook at home! I sheepishly called the music chairperson, who had been calling around for the past two hours, and told her that I had found it. "Well, it happens," she said cheerily. What a great response. It's just the sort of kindness that has been blessing our family over the past year, and especially in the last month.  

When we learned that Max would need to begin CIC (clean intermittent catheterization), we stayed home from our activities for a few days and focused on getting the new routine down. I never imagined that the learning curve would be so steep! My nurse practitioner friend drove over to my house (with her three kids in tow) and helped me place the catheter on the first day. The first time took me several tries over a period of about 15 minutes. When I finally got it, I cried. Then she cried. "Day one," she said. 

She continued to help me over the first couple weeks, meeting me after we got our kids from preschool or coming to my home. Another friend helped me on the days that our sons do "project days" together. My dear neighbor came over once, too. Some times it would take an hour from start to finish, if I drove to someone's home for help or if I just couldn't get it. After each catheterization was done, I would start dreading the next time, only a few hours away. One friend sensed how the catheter was taking over my life and made me dinner one night--it was much appreciated! The learning curve has plateaued now, thank goodness. And after reviewing the first sheet of urine volumes, the urology team agreed that we would only have to catheterize Max three times a day instead of four--happy news! 

     As I'm writing this, I feel physically and emotionally lighter. I feel uplifted by friends who have carried me through this month. I'm grateful for prayer and for God's watchful care.

Enjoy a little clip of Max and start to see why everyone loves him:

He's just a little slice of heaven.

As a record

Chart:
"Max has diagnoses that include lipomyelomeningocele, neurogenic bowel, and neurogenic bladder."

Visit:
Max's bladder pressure spikes to 120 cm (40 cm is an uncomfortable pressure for an adult) when the bladder is filled with only 50 mL of fluid. He has three bladder spasms during the 10-minute test.
"How can you be certain that the test catheter doesn't influence the results?"
"He cannot take a bad test."
"He was so tired. That catheter was a challenge."
"You cannot fool this test."
"But...."

Seventy-five–minute visit (it is recorded on the chart):
Max will begin using an intermittent catheter, four times a day. Eight a.m., 12 noon, 4 p.m., 8 p.m.

Also.

Strangers: 

"Oh, look how flexible he is!" 

"He's going to be a hurdler!"

"Look how he sits! Did your other kids do that?"

No, they did not.

And then.

Chart: "Max came to this particular Spina Bifida Clinic due to sudden onset of lower body weakness."

Visit:
The lower body weakness has resolved. Sometimes "lipo kids" have relapses like this. Sometimes it progresses. Sometimes it does not.

That haunting mass at L5-S1.

Some days I sail along sanguinely: I guide the catheter in and out in only a few minutes; I chat and laugh about it with friends; I make blankets for the children's hospital. His legs look normal, really.

Some days I throw the catheter against the wall. I forget to record the urine volume on the chart. I cry.

Today I detest it. I scrape the mass off the MRI in my mind with a razor blade and dice it into pieces too tiny to be detected.