Happy Birthday, Ethan!

Mr. Ethan turned 4 on Sunday, November 27.

This boy continues to bring joy to many people throughout his days.  He is kind, caring, inquisitive, and pretty content.  He still loves to play with his vehicles, but he seems to be branching out into different ways to play.  In fact, he has followed his sisters lead in obsessing about Perler beads.  His favorite things to make are jets.
 

While we were still up at the Colba's for Thanksgiving, Ethan received his birthday gift from his grandparents.  Not only does Ethan have a new catapult truck, but he also was able to help Grandpa put it together in his workshop.  I think both grandfather and grandson considered this a very special memory.

Sunday morning arrived with much celebration.  Cards, gifts, breakfast french toast, singing, finding 4s, etc.  Ethan has been counting down his sleeps until his birthday for several weeks now.

We worshiped at church before having Ethan's chosen birthday foods: macaroni and cheese and chicken nuggets.  He's certainly a typical kid in some respects.

Instead of asking for one of our family favorites for dessert, he wanted to pick out a cookies and cream pie at the grocery store.  Not only was it less work for mom, but everyone considers these treats extra special nowadays :)

After lunch, we surprised the kids with a birthday trip up to the Dells (in lieu of a birthday party) to help Ethan celebrate his big milestone.  Plus, we had a bit of money left on our gift card from last year and decided this would be a perfect opportunity to use it :)

The Kalahari was already decked out for the Christmas season.

And our kids were thrilled to have a fun mini-vacation, especially since they didn't have school on Monday.

Ethan decided that we should play in the theme park before going into the waterpark.  We attempted our family's first adventure with miniature golf.  Ethan enjoyed himself, but I'm not sure how much the rest of us did.

It took our family a L-O-N-G time to get through each hole.

Anna tried standing to hit the balls, but we learned that sitting was easier and faster for her.

Needless to say, we didn't keep score :)

Ethan also wanted to participate in the bumper boats.

Unfortunately, even though Ethan is 4 years old, he's not quite 42" tall so he wasn't able to do the go-karts.  But the girls did, and they had fun.

After a quick dinner in our room, we headed down to the water park for a couple of hours.  We spent our whole time on Sunday evening in the wave pool/beach area as well as in the mid-sized waterslide space.  Matt and I carried Anna up a few times so she could go down the mid-sized waterslides.  Ethan just kept going up, sliding down, going up, sliding down, going up, sliding down, ...  We ended our evening in the hot tub before heading up to our room for an attempt at a restful night's sleep.

Monday morning we enjoyed breakfast at Cracker Barrel before getting packed up and ready to tackle the water park one more time.  Since we hadn't done any of the tall waterslides the night before, we made sure to go down those.  I think between Matt and I, Anna was carried up to the top half a dozen times so she could ride the rafts down.  Our bodies were sore by the end of the day.

Two hours later we had played in the pool, done some mid-sized water slides again, and gone down the tall waterslides as much as our legs could handle.  The grumpiness of our kids later in the day was worth all of the smiles on their faces during our 24 hours at the Kalahari.  This was probably the perfect way to celebrate Ethan's birthday this year.

Prayers for Ethan

Thanksgving
Please give thanks that Ethan is a happy, healthy, typically developing 4 year old.
Please thank God that our family is blessed to spend time with Ethan every day.
Please give thanks for all of Ethan's attributes and their affect on the rest of us.

Requests
Please ask God to continue maturing the faith that is already growing in his heart.
Please pray that God continues to give us wisdom and strength as we continue to develop our parent relationship with him.
Please ask God to continue to shine through Ethan's life to those around him.

Happy Thanksgiving!

Thanksgiving this year was more traditional than it has been in years for our family.
 

On Thursday morning we journeyed up to my parents' home to join them, Adam and Jess, Jess' parents, and Tanqi, the dog, for the holiday festivities.  Adam, Jess, and her family DROVE from Colorado this year to spent the time in Wisconsin.

While we were all sitting around the table, Adam and I realized that we had never celebrated Thanksgiving in Augusta together!

And who knows when we will all be together like this again, since Jess is due in February with the next Colba grandbaby :)

The 36 or so hours away from home for this holiday went very well for our little family.  Uneventful drives, delicious food, and great company made for a memorable few days.  Of course we all had the opportunity to take walks in the woods, enjoy Gator rides with Grandpa, and play with toys or games with Grandma.

This year our family stayed in a nice motel up the road from my parents' home.  It was a different experience for the kids not sleeping over at Grandma and Grandpa's, but the idea of eight adults, three kids, and one dog all sleeping under one roof was a little much for us :)

Last week during dinner one night, we had the kids come up with things for which they are thankful.  Here's a few of the more noteworthy ones, with some of ours included as well.

* Good, safe schools to attend every day (Anna)
* Family and friends (Kate)
* Toys (Ethan)
* A secure job with good insurance
* Home appliances like refrigerators, dish washers, washing machines, etc.
* God
* Our home
* Indoor plumbing
* Fun and hard-working therapists
* ipads
* Assistive technology like wheelchairs and walkers
* Anything that grows
* Our church

Now we're gearing up for the little man's birthday and the season of Advent.  Hooray!

A better, but busy, week

Last week was a better one in our family, except maybe for Matt.  He ended up with a nasty cough that is still lingering.  Bummer.  But he has still been able to go mountain biking in the evenings once a week, in spite of the early darkness.  Biking through the woods at night would not be my choice activity, but Matt really enjoys it, as long as he has plenty of back-up lights along.

Ethan's stitches came out on Monday and the scab finally came off on Thursday or Friday.  We are just trying our best now to remember to have him wear a hat when he's outside.  The doctor said that the best way to prevent a lasting scar from this cut is to keep the new skin protected from the sun as much as possible.

Tuesday was an eventful day, although completely unrelated to the election.  Our family was invited this year to be interviewed for the Make-a-Wish-Wisconsin radioathon.  (We were asked last year, too, but Anna had already missed quite a bit of school due to doctor's appointments by December so we turned them down at the time.)  Instead of participating in the live interviews during the fund raiser hosted by Z104 on December 1-2, we were interviewed ahead of time for a pre-recorded montage.  We ended up at the radio station on the afternoon of election day.  How's that for timing? :)

Wednesday was Kate's parent-teacher conference.  Since last winter, we decided that it's easiest now for us to just bring the kids along and have them sit in the hallway with books or other activities.  Maybe not the best use of everyone's time, but it takes a lot less coordination than trying to find someone to watch them.

As we suspected, Kate is doing great in school again this year.  She does very well academically and socially.  She is continuing to grow with her confidence and potential leadership skills.  The more confidence she gains and shows, the more other kids look to her.  Looking back to her fall kindergarten conference, Miss Kate has come a long, long way.

Wednesday was also an eventful day because the field behind our yard was finally harvested!  We have been waiting, and waiting, and waiting for this day to come.  My parents happened to be driving through town that day and had taken Ethan and I out to lunch.  When we got home, we recognized the sound of the tractor out back right away.  Ethan and Grandpa watched the combine and tractor for a good portion of the afternoon.

Ethan has told me more than once this week, "Grandpa knows a lot about combines."

Kate and Ethan were able to explore out in the field with a neighbor one evening last week and then we made the trek out back as a family on Saturday.

Since the farmers grew beans this year instead of corn, the stubble is much lower and so Anna can drive the go-kart from island to island.  Hooray for modified family events!

The afternoon adventure proved to be fun, as it is every year.

Other than that, we are still plugging along here.  We are trying to get geared up for the celebrations and holidays in the coming weeks, but the weather up here is making that a bit tricky.  We still haven't had a real cold snap.  I finally pulled up the peppers and trimmed back the raspberry bushes, but our broccoli plants are still producing enough side shoots to give us a meal's worth about once a week.  The grass is still green and some of the fruit trees even have leaves on them still.  Crazy Wisconsin weather!

Rough week

Last week turned into a rough week in our house.  I'm guessing that ours wasn't the only household that had issues with Halloween and trick-or-treating falling on a Monday night, but ours went a little beyond the Halloween hangover.

Like I said last week, Tuesday morning was rough in our house.  Then Ethan fell out of bed on Tuesday night.  Or at least we think he did.  We're not quite sure how far up the ladder he was before we heard the "thump" and then crying.

Wednesday morning was even more challenging than Tuesday.  But the time the girls made it to school, I already had more laundry to complete that day than was originally planned ... one child's pajamas and bedding (which I had JUST washed on Monday) and another child's pants.

And then the real excitement began.  While Ethan and I were playing at an open gym hosted by the school district, Ethan fell and hit his head on a door hinge.  I scooped him up and saw blood.  Crap.  We hustled into the nurse's office and soon realized that our day was going to include a trip to Urgent Care, most likely for stitches.

Before moving on, here's a few facts about Ethan.

1) He does NOT like blood.
2) He does NOT like the idea of going to a doctor when he is hurt.
3) He does NOT like getting attention when he is hurt.

Our time in the nurse's office at school was tough.  Ethan was very loud, very strong, and very vocal about wanting to go home.  My body was sore for a few days after the effort required to restrain him in order to prevent him from getting hurt any more.

But, by the time we made it into our van and were able to deal with things as we know how, he was fine.  He still didn't want to go to the doctor's office, but I started using some of the skills and techniques that I learned from the best Child Life Specialists a few years back.  We calmly talked about what might happen, we discovered that I had randomly put an ipad in our bag so we could have videos to distract us at the doctor's office in addition to the books we borrowed from school, and we made a plan to pick up lunch from Culver's on the way home as a treat.

Ethan had a few more tears on our way back to the exam room, but then we was SO brave.  In the end, our boy received five stitches on his forehead and I had some bloody clothes to add to my laundry pile for the day.

Here's a shot of the stitches just before they were removed on Monday, first with a goofy face.

Then with a sweet face.

Seriously, though, Ethan is not a clumsy or reckless kid.  I've been taking my kids to this open gym since Anna was 3 and NOTHING like this has ever happened to any kid when I've been there.  It was just "one of those things".

And ... skin heals really fast.  Faster than muscles, faster than bones, faster than the brain.  A few stitches is not a big deal in the grand scheme of things.  Actually, Ethan was back to normal as soon as his belly was filled with a tasty cheeseburger and some fries.  It wasn't even too hard to keep him from doing anything crazy for a few days.

"No forward rolls, Ethan."
"Okay."
"No lycra swing, Ethan."
"Okay."

If the stitches were our only incident of the week, we would have been fine.  But then the girls also had colds.  Nothing too nasty, but sickish kids just throws off our life's delicate balance.  Kate was checked out on Tuesday afternoon and then again on Wednesday.  Anna threw up more than she has done in ages, and she had more tantrums than she has had in quite awhile, too.

We ended up having a big family meeting on Sunday and are going to try to tackle some of the behaviors that have been creeping back into life recently, not just from Anna, but from all of us.  It seems like we need to have a meeting like this a few times every year.  Let's hope it works!

But ... there was some good in the midst of the week, too.  Matt came home a little early on Friday and we made Mischnick Pizza together for dinner.  Then the kids had plenty of free time on Saturday morning while Matt and I accomplished a whole list of fall clean-up chores.  Sometime in the afternoon we decided to invite some friends over for dinner and a campfire because ... why not?  The evening temperatures were predicted to be in the 60s still, we didn't have to worry about getting up early because of daylight savings time, and we thought it'd be fun.  I mean, how often do we get weather like this in November in Wisconsin?!

Sunday afternoon Matt took Anna and Ethan to the wheelchair park while I took Kate on a hike in the UW Arboretum.  We had invited one of Kate's classmates along, but she, unfortunately, was out of town.

Kate and I had a great time anyway.  This girl has such energy and such interest in the world around her.

She really wanted me to take some pictures of the fungus we found :)

In between moments of stopping to look at mushrooms, she skipped and/or ran for the first half mile or so.

Then we were brave enough to head through the tunnel that goes under the Beltline Highway which connects the two sections of the Arboretum.

Our snacks gave us an added boost of energy, but Kate spied a bench right when we both needed it.

An hour and a half of fresh air, sunshine, and hiking made for a tired Kate at the end of the day.  I can't remember the last time she was actually asleep at 8:00!  Granted, this was the weekend we changed the clocks, but it was still surprising.

We are hoping this glorious weather holds out a little bit longer; it really has been an awesome fall once we got past all that rain in September.  And we are hoping that this coming week involves much less trauma and drama than the last.

Please pray that Ethan's cut continues to heal completely, that we find ways to help Kate release some of her energy this winter, and that Anna continues to find ways to deal with her life as it is.

Brain Cancer Awareness Game

On Sunday we attended a Badgers basketball exhibition game in which the UW Badgers played against the UW Platteville Pioneers at the Kohl Center on campus.  Not only were we able to attend the game courtesy of the UW Athletic Department, but Anna presented the game ball prior to the game starting ... and we met the coaches and players after the game outside of the locker room for autographs and photos.

Really?  Really.

It all started about a week and a half ago when we received a phone call from someone at our church (who we don't really know, but, honestly, everyone at our church knows about us).  She had heard about an upcoming Badgers game and took it upon herself to contact the UW Athletic Department to see if she could get Anna invited to the game and somehow be involved in it.

At first Matt and I were not sure this was something we wanted to do.  We don't go around seeking to be in the spotlight.  In fact, most weekends we would rather hole up in our home or only interact with those who know us.  Plus, we didn't know quite what was involved; the phrase "poster child" had been used at some point and we didn't know exactly what that meant.  And finally, although we live in Madison, we know of plenty of others in this town who are bigger Badger fans than we are.

We also worry about how this kind of event might affect our kids in the long run, especially Anna.  We work hard to help our kids understand that the world does NOT revolve around them.  Perhaps you can understand why we were a little hesitant about having Anna present the game ball at a UW Men's Basketball Game.

In addition to the larger parenting concerns, we knew the game would be on a Sunday after church and Sunday School in a situation completely unfamiliar to any of our kids.  Historically, certain members of our family don't do well in new, high-sensory environments.

But then we did a little research about the game itself.  Here's a great article that explains the history behind this particular game: Gard vs. Gard Exhibition Way More Than Just Basketball.  Basically, the coaches of the competing teams, who are also brothers, wanted to raise awareness of brain cancer due to their father's diagnosis and death from the disease last October.  The game turned into the Brain Cancer Awareness Game, with high involvement from the Carbone Cancer Center at the University of Wisconsin Hospital and Clinics.

We also did some hard thinking.  Whether or not we like to admit it, there are many things our family is not able to do together because of Anna's disability.  This was something we could do together and we would probably make some good memories, too.

The Monday before the game we called the Assistant Athletic Director of Marketing and Promotions to let him know we would attend and Anna would participate in the presentation of the game ball.  Our main tasks in preparation for the game were figuring out where we would park, finding some good, updated Badgers gear, and making sure Anna knew how to hold a basketball on her lap while wheeling herself around.

Then on Monday afternoon we received a call from the Child Life services at the hospital, offering us a set of four complimentary tickets to the game.  We let them know they could pass those tickets along to another family since we were already involved in the game :)

Later in the week, we received an email from our contact in the athletic department with a draft of the PA announcement as well as this little gem, "Also, the Badgers head coach, Coach Gard heard that your family was attending the game.  He extended an invite to meet up with him after the game by the locker room if you are interested for photos and autographs."

Really?  Really.

On Sunday we managed to find a relatively decent parking space, got our tickets from will call, made it through security, and found our seats with a few minutes to spare.

We also learned that we were sitting close by another family who we have gotten to know through BCCN events, as well as Anna's school.  Anna's P.E. teacher's daughter was diagnosed with leukemia four years ago and finished up her treatment just before Anna started third grade.  It turns out they also received complimentary tickets to the game and were invited down to center court during half time.

Soon our escort for the day's events arrived and we left with her to make our way to the first level.  We worked our way around and around the behind the scenes of the Kohl Center to get to just the right spot at just the right time.

And then, there was this,

and this,

while Anna was introduced over the loud speaker and on the big screen.  Pretty cool stuff.

Once we survived this portion of the day, we were escorted back to our seats to watch the game.

At this point we had the realization that our kids know very little about basketball.

Ethan: "The players don't fall down a lot.  They must not get hurt like they do in football.  Do they get hurt, Mom?"
Kate: "What was that sound for?  Why did the buzzer go off again?  How many points do they get for that basket?  What about that one?"
Anna: "I bet the scores of basketball games are a lot higher than those of football games."

The kids also got a kick out of Ethan Happ, #22, because his name is Ethan, of course.  Kate and Ethan were very conscious of when #22 came into the game.

Overall, the kids did great.  Matt reminded me of our baseline expectation for days like this when he said towards the end of the day, "Hey!  No one melted down!"  That's a pretty sweet deal on a day like this.

The Pioneers of Platteville held their own for the first half and were only down by about 10 at halftime.  But then the Badgers really took control.  Our kids got to see plenty of three-pointers as well as a few dunks.  Here's an article summarizing the game, with the coaches' reactions, too, in the video section: Men's Basketball Opening Emphasis.

After the game we waited for our escort to arrive once again and she led us down to the first floor and presented each kid with a signature basketball.

We realized when we passed the "No media beyond this point" sign that this was a pretty exclusive hallway.  While we were waiting, we recognized a couple of Madison's other "medulloblastoma kids", one of whom was on P4 a lot when Anna was.

Then Coach Gard came out.

What a nice guy.  He must have talked with Anna for at least five minutes, then with the rest of us for a bit longer.  Good quotes from our kids during this time are as follows:

Coach Gard: So do you like the Badgers?
Anna: Well, we're more of Packers fans, but I like it when Bucky comes to my school.

Coach Gard: What sports to you like, Ethan?
Ethan: Um ... Bowling.

Finally he said something like, "I guess I'd better go talk to the media", but made sure to instruct the others on staff to direct the players to sign our basketballs and the programs/t-shirts of the other kids.

Then, one by one all (except one) of the UW Men's Basketball 2016-2017 players came out and signed the basketballs.

Really?  Really.

Some of the guys chatted and were more friendly than others, but they were all very polite.

In the end, did we have a good time?  Yep.
Do we think we deserved it?  Nope.
Are there plenty of other kids who could have been in Anna's place?  Yep.
Are we grateful for the opportunity we had?  Of course.

Still, it's always humbling to remember what has brought us to this point and the lengths to which people will go to bring some extra joy into Anna's life.

A nice, long weekend

Last week turned out to be a good week, although the weekend didn't seem as relaxing as it sometimes does.

The big event mid-week for Kate was that she lost tooth #2, at school even!

The big event mid-week for Anna was the annual IEP meeting, to monitor her progress, to set new goals, and to evaluate the overall plan for Anna's education and time at school.  Big picture ... Anna has an amazing team around her at school.  Each member is looking out for Anna's best interests with their particular specialty, but also has a good perspective on Anna as a whole person.

In terms of progress at school in the past year, Anna has come a long way, both academically as well as functionally.  She has met many of the goals set for her last year, both those requiring specific tests as well as those that are more observational in nature.  Her reading, in particular, has greatly improved, thanks in part to her ipad app that allows her to download virtually any book, make it "large print", and narrow down what she sees to only 3 lines at a time.  Of course, Anna's hard work and motivation played a big part in this progress, too.  No matter what the specific reasons, just know that Anna has made amazing progress all aspects of her reading in the last two years.

As part of the review process, it has been decided to scale back some of Anna's support at school to allow her more independence.  Sounds great.  Everyone is already looking ahead to what we can do for Anna now that will help her in the coming years.  Also great.  We are all pleased with how far Anna has come, but we all (including Anna) look to the future to see what she can work on next.

As always, we are incredibly grateful for our local school district.  The programs, the staff, the students ... we couldn't imagine anything better right now.

The other nice perk of the week was that the girls has little homework.  Hooray!  For Anna especially, these little breaks are nice.

Since Thursday was going to be kind of crummy outside and the girls were both off of school, I picked up a set of perler beads earlier in the week.  I don't think our kids have ever played with them at our house before!

Whenever there was a moment of down time, they were the preferred activity all weekend.  Here are just a few of Kate's creations.

Her creativity, in particular, really showed through with this basic set of colored beads.

Friday we took the kids down to Rockford to the Discovery Museum.  They all wanted to show Matt some of the fun exhibits on this field trip.

Although the trip wasn't as memorable as the one we took in August, I think the kids had a good time.

In the future, however, I will look ahead to a weekend as a whole before planning a day trip on a no-school Friday.  The rest of the weekend turned out to be busier than I expected.

Saturday we participated in a S.T.E.A.M. activity at our local library.  We created a paper castle and a few catapults out of spoons, rubber bands, and pencils.  Then we all fired marshmallows at the castle walls :)

Immediately after the library activity, the kids walked (or rode in a wheelchair) for the Halloween costume parade.  This fun local tradition drew many more participants this year because of the beautiful weather.

Sunday's activities will be reserved for a separate post.

Our Halloween evening on Monday started well, but like with many other families, it ended with some over-tired kids who were already experiencing a candy hangover.

I took the kids out for about an hour before dinner while it was still light out and the weather was warm enough that we didn't need coats.  After dinner the girls actually had homework to do.  Really?!?!  Oh, well.

Tuesday morning was a little rough on some members of the family, but we all made it out the door relatively on time.

Tuesday's highlight so far has been a picnic and nature walk at Aldo Leopold Nature Center for me and the boy.

 I've been wanting to do something like this all fall and we *finally* managed to do it.

What a beautiful day we had for our time together!

We'll take a 70 degree day in November any time!

Stay tuned for another post soon about Sunday.