Family Portrait

My sister Emily drew this wonderful family portrait for us in honor of Michael's brave battle with cancer.  The portrait of Michael is based off of one of the last pictures we have of his charming smile.  The rest of the portrait is based off a family picture we took last summer shortly after Michael completed his cancer treatments.  We are so grateful he's still with us and thriving!

Sarah, Whitney and Spencer finished school last week, so summer vacation has officially begun!  We're enjoying our Memorial Day weekend with Liz's parents here in town.  They were originally planning to come last month for Liz's birthday but at the last minute they had to change their plans.  They've been a tremendous help around the house and with a couple of home projects.

My brother ate my homework!

This is the last week of school for our kids.  Sarah has a big report due on Monday about sea turtles and we've been trying to encourage her to get it done early so she doesn't have to worry about it.  She managed to get it done a week ago, but the other day Michael found it on the floor.  In a blink of an eye he managed to rip it to shreds and start eating it!

It's a hand written report, so it's not a matter of simply printing off a new copy of it.  What's Sarah going to say to her teacher on Monday?  That her brother ate her homework?  We managed to gather together all the pieces Mikey hadn't digested and taped the report back together as best we could.  We emailed the teacher to let her know what happened.  If Sarah was in high school or college she'd probably want to rewrite it, but for a first grade report we're calling it good enough.

Sarah's repaired report...almost as good as new!

Mikey's funny that way when it comes to eating.  He still mostly eats bread, cheese, and milk.  Even in nursery at church they give him all kinds of crackers and raisins and he'll barely touch them.  But when it's coloring time and they bring out the paper and crayons, he quickly starts shredding the paper and stuffs the pieces in his mouth.  Oh well, at least he's getting fiber in his diet.

Spencer turned four on Tuesday.  He loves balls and playing with his indoor basketball hoop, but the indoor hoop was getting to small for him.  We found a great deal on an adjustable outdoor hoop, so he was thrilled to receive it for his birthday. 

Spencer testing out his new hoop

Spencer's gumball cake

"I wish for...more gumballs!"

Happy Birthday Spencer!

 Spencer's been going through a bit of an identity crisis lately.  Whenever we call him Spencer he always corrects us by saying, "I'm not Spencer, I'm Peter Pan."  Or "I'm daddy".  Or "I'm baby".  Or someone else.  Sarah went through the same phase when she was Spencer's age with Disney princesses.  The other day when we asked him to clean up a mess he'd made Spencer told us "I'm not Spencer, I'm a grown up".  When we asked him why he was a grown up he said, "Because grown ups don't have to clean up!"  We got a good laugh about that one!  I wonder what he thinks we do all day and especially at night after he's in bed.

At school last week Whitney got to say the pledge of allegiance over the school's PA system with a few of her classmates.  One of them, a boy who hasn't been very nice to her, showed up late.  The other kids didn't want to make room for him, but Whitney invited him to come stand by her. 

Later that day there was an awards assembly at school.  Sarah won the academic achievement award.  We're so proud of her for working hard in school!  Whitney didn't win any awards and was feeling a little sad about it.  But after witnessing what she had done for that boy in her class, when Whitney got home from school Liz presented her with the "Kindest Kindergartener" award, complete with a certificate and flowers.

Whitney and her classmates reciting the pledge of allegiance

Sarah wins the academic achievement award

During Michael's vision therapy appointment last week the therapist acknowledged that Michael's vision is doing so well that there isn't much left that she can do for him.  Such a tremendous blessing after being mostly blind a year ago!  His vision isn't perfect and never will be, but especially after his eye surgery last December it's doing very well.

We also found a new speech therapist for him down in Denver.  There aren't any speech therapists close to us that have any experience with facial paralysis.  A typical speech therapist gets their face close to Michael's face and repeats syllables over and over (such as as "ba-ba-ba-ba-ba") until he gets the hint and starts repeating them as well.  Well, in Michael's case, that's like a physical therapist walking around and around a paraplegic in a wheelchair until he gets the hint and starts walking.  Michael's facial paralysis renders him physically unable to do certain things, so merely demonstrating those things to him is completely useless.  This therapist in Denver has specific training and tools for facial paralysis, so we're hoping it will make a difference.  It's expensive and it means going to Denver on a regular basis, but if it helps him with his eating, drinking, and speaking, it will be worth it. His first evaluation is in June.

Let's Play Music

Three years ago Sarah started taking music lessons from "Let's Play Music".  It's a great three year program introducing young children to music in fun ways.  Sarah's done very well in it, but there have been times we wondered if she'd ever complete the program.  For example, there's been a lot of driving across town to Miss Emily's house for lessons, so we're grateful to friends who have gone out of their way to take her to lessons when we weren't able to.  Parents have an active role in the program and have to be there for some of the lessons, so we're grateful for babysitters who have watched our other children on days when Liz had to be there with Sarah.  Not to mention the numerous times Sarah got frustrated when she couldn't learn the songs right away and didn't want to practice anymore.  She's such a perfectionist (takes after her parents) and we debated whether it was worth all the backtalk and tears to keep her in music lessons while she's so young and with everything else going on in our lives.

But Sarah stuck with it (as did we), and on Friday night she wrapped up her three years with a recital where she played a song she composed herself to a large gathering of parents and fellow students.  We were so proud of her!

Sarah's recital

Sarah's song is called "Snowflakes".  Sarah's teacher emailed us an mp3 of it a while back so we could hear what it's supposed to sound like.  When Liz played the mp3 for me I didn't know what it was at first and said, "That's a pretty song, who wrote it?"  She gave me this incredulous look and replied, "Sarah did."  "What?! Let me hear that song again!"

Watch Sarah's performance of "Snowflakes"

After the recital we gave Sarah a bouquet of purple flowers--that made her beam!  She also received a song book with all of her fellow classmate's original compositions.  She's trying to learn some of them and is already starting to write more of her own.  Upon seeing the purple flowers Whitney asked Sarah to teach her how to play her song so she can get flowers too!  Unfortunately we don't feel like we have the bandwidth to put Whitney in Let's Play Music, but she is definitely showing an interest in learning to play music and we hope to put her in piano lessons before too long.

Our kids had another snow day on Wednesday, the first day of May.  In the course of one week they went from playing in the snow, to playing in the sprinklers, to playing in the snow again.  That's Colorado for you.

MRI results

Liz took Michael to Children's hospital this morning for his 3-month MRI.  It's clean!  Dr. Foreman was very pleased with the progress Michael is making.  He's actually grown 4 inches since his last MRI 3 months ago.  This is remarkable since there was a good chance radiation was going to wipe out his ability to produce growth hormones.

Also, this last week we've seen him trying to close his eyes!  He mostly does it when he's upset, like when we try to feed him puree's from a spoon.  In the past he could only close them at night when he's asleep, and he's progressed in recent weeks to being able to half-close them when he blinks.  It's great he's still making progress in that department.

He still likes to climb up the stairs whether we're watching or not.  He can do it pretty well for the most part, but he's had a couple of tumbles when he loses his balance.  Fortunately nothing serious.

First winter snow storm

We've had a pretty dry winter with very little snow.  Now that we're halfway through April, we got our first "major" snowstorm last week with almost two feet of snow!  I don't mind the spring snow too much, since I know it will melt pretty quickly.

Tim and Whitney clearing the driveway

Sarah having way too much fun clearing snow off the trampoline

We still haven't figured out what the bedroom arrangements will be in June when our baby girl is born. So we tried a couple of experiments over the weekend.  On Friday night we put all 4 kids in Michael's room.  Michael slept in his crib and the other three slept on the floor.  Spencer lasted about ten minutes before he was sent back to his own room for "disturbing the peace" one time too many.  Otherwise the night went pretty well.  On Saturday night we tried having the three older kids sleep in sleeping bags on the floor in the basement rec room.  They've always wanted to go "camping" down there and had a ball.  There are a lot of toys down there, so this was the scene I found when I went to check on them this morning.

This Thursday Michael has an MRI on his brain and spine down at Children's Hospital to check on the status of his tumor.  We're praying for good news!

Hazel's Birthday

Yesterday Michael's friend Hazel celebrated her second birthday.  Hazel is just a few months older than Michael, has the same cancer as Michael, and was diagnosed a few months before Michael.  We met Hazel and her family last year at Children's Hospital while Michael was recovering from his first surgery and Hazel her second.  Hazel is such a sweet little girl and comes from a wonderful family.  We're so grateful to know them.  Sadly, Hazel's cancer has returned, so her birthday party was both a wonderful and a sobering event.  She and her family are always in our prayers.

At the party we visited with two other ependymoma families who are also being treated at Children's Hospital in Denver.  Tanner and Natalie were both diagnosed at a very young age.  Tanner is now a teenager, and the Tanner Seebaum foundation founded by his family has brought millions of dollars into Children's Hospital to help fund pediatric brain cancer research.  Michael is very much a beneficiary of his foundation.  Natalie was diagnosed a few months before Hazel and has made a miraculous recovery thus far.  Watching her play and interact at the party she seemed just about like any other three year old.

Thanks for the birthday wishes, Mikey!

Here's a birthday kiss!

Michael's daily physical therapy is really starting to pay off.  This last week he started crawling on his hands and knees a bit more, rather than his usual army crawl.  He also climbed to the top of our stairs all by himself for the first time!  I have to stay behind him in case he loses his balance and takes a tumble.  But for the first time I didn't have to help him or catch his fall even once.  Today he climbed the stairs again by himself, crawled over to Spencer's toddler bed and climbed onto it, pulled himself up to the foot board, and stood there clapping to himself for several minutes.  "Look dad, I'm king of the mountain!"

Special Needs Kid

This is me and Michael today.

The girls are at school and Spencer is sitting next to us finishing up a game on the Nabi.  It's a snowy April day.  I love the snow, even in April.

Yesterday, Michael astounded us by spending most of the day crawling with his arms extended.  For Michael this is nothing short of extraordinary.  We wonder and hope that maybe one day he will walk.

He's able to stand stable for longer periods of time, long enough for me to snap a picture of the boys waving goodbye to daddy in the front window, our daily morning ritual.

We enjoyed a weekend of General Conference for our church.  We set up a "tent" for the kids and had all sorts of games, activities and treats while we watched the beautiful inspirational messages from the worldwide broadcast on television.  Our kids love this weekend and are always disappointed in only comes every 6 months.

Mikey found a balloon to bounce around and play with

The kids having a relaxing morning

Although Michael is making progress, his needs are still sky-high and each day presents numerous challenges.  He is still on anti-nausea medicine everyday and even with that will vomit every once in a while, like last night at dinner.  He eats poorly and we have to spoon feed him at least a couple of times a day to make sure he gets adequate calories and nutrition.  Several times a day he becomes exhausted or doesn't feel well and needs to rest in our arms.  He is prone to accidents and falls, especially as his interest in things around him increases.  We have to keep a hawk's eye on that little guy.  And as I mentioned last post, communicating with him is very difficult.  His physical challenges make it seem like he is a special-needs 12-month-old, rather than a 21-month-old.  Nevertheless, despite it all, we feel so blessed everyday we have with him.

Turning a page

                                                     Happy Easter everyone! 

Here's some updates of the latest around here.  Today is April Fool's so our jokers Whitney and Spencer like putting on each other's pajamas:

Sarah lost her two front teeth and is as cute as ever.  This only happens once in a little one's life and I can't help but love this grin:

And I love it when the kids are all home from school and we have lunch together:

The kids had a great Easter with what we thought was plenty of "stuff."  But funny enough, our oldest remarked that she was pretty disappointed that this Easter wasn't like last Easter because, "we didn't get very many things this year."  Of course, last year we had so many wonderful people provide us with beautiful things for our children for Easter.  So I guess this year was time to readjust expectations for these guys!

We had a little egg hunt in our backyard:

Whitney

Spencer

Daddy and Mikey

Sarah

Sunday we enjoyed beautiful weather and celebrating the miracle of Easter.  The kids also loved their new Easter clothes.

Had to capture one of Sarah at the piano.  She just recently finished writing an original piece for her piano class and I might say I think it turned out pretty awesome. 

Captured this one just after Whitney had been sobbing her eyes out over one thing or another, a daily ritual for her lately.  But it made her cheeks cute and rosy nonetheless!

Spencer ate through his candy faster than anyone.  He doesn't like chocolate so he plowed through handfuls of jellybeans.

Everyone got empty baskets except for Mikey who took home the biggest stash (just kidding).  He just happened to have the basket we had compiled all the candy into.

Along with these happy days, the last couple of weeks have been filled with some bittersweet moments for Tim and me.  It's been the turning of a page in our lives, so to speak, as we've come to terms with the new Michael.  Saturday, March 30th, marked one year since Michael's second surgery which left him with significant disabilities.  It was one year ago we last saw him smile as he once did.  It has seemed like a long road in which every day we've had to take a walk with grief, some days brief, and some days longer. 

Michael practicing his signs while watching, "Music and the Spoken Word," his favorite Sunday show because he loves the music so much.

He also loves rolling balls back and forth with us

Each day is a challenge is trying to communicate with him as he was our baby that "talked with his face."  He has trouble forming words because of his paralyzed face, and his sign-language skills suffer because of his impaired coordination.  Some days I go to bed wondering if I even understood any thing he was trying to say to me that day.  But we get up the next day and try again.  And again.  And we have marvelous days and terrible days and everything in between.

But perhaps because of the promise of Easter, the newness of Spring, and brighter days that fill us with hope, we have begun to see and accept the new Michael as a gift.  Truly, we feel blessed that he has a little smile on his right side so we do know when he is happy.  We have beautiful pictures of him taken just before the surgery, so we will always know and remember that smile.  And his personality is so great and he is so much fun to be around that each day is a special day just to be with him.  Sarah commented the other day that when she's feeling down, Michael somehow always seems to help her feel better.  Perhaps we are coming to realize that this is how it was always meant to be and that if we look for it, we will realize this life will be sweeter than if none of this had happened.

And here is 21-month-old Michael as he is right now:

I *heart* the smartphone

Did I mention I also *heart* reading Whitney's readers from Kindergarten?

These will keep me occupied for a long time

My body may not be perfect...

but I've got a lot of love to give.

I'm also into getting into cupboards and drawers and dumping their contents.

While this might annoy some moms and dads, it makes mine super happy to see me able to do so much.

Happy Easter everyone!

Taking a trip for Spring Break

The kids were out of school last week and we decided to do something brave and take the kids on a trip.  We were pretty sure that the 3 oldest kids would have a great time but we weren't so sure about Michael.  He loves new places and exploring, but only in the arms of mom and dad, so he spent a lot of time crying anytime we put him down on the floor of our hotel room, or on the bed (until he fell off -- that just about gave us a heart-attack), or in a pack-n-play to sleep.  We had some pretty sleepless nights and some pretty brutal moments.  Sarah randomly threw up in the lobby of the hotel and Liz and Whitney are recovering from bad colds and coughs.  But some of the moments were priceless and exactly why we took this trip.  We went to the exotic local of Colorado Springs, about a 2 hour drive from our home.  Our kids are young, so Colorado Springs offered some really awesome things for them.

First, a hotel.  Wow, just staying in a hotel made these kids really excited.  We brought along Disney classic cartoons to watch since we couldn't find anything interesting on cable and the kids loved them.  It was one of their favorite activities.

They also loved the swimming, which we probably did four or five times while we were there.  Each of the kids became more comfortable in the water and braved swimming in the deep end with help from floaties or life jackets.  We somehow missed getting a pic of Mikey in the water but he loved splashing and trying to lick it up with his tongue.  He didn't mind one bit all the water splashed in his face even though he couldn't blink it out or protect his eyes.

We did a couple of things to keep the costs low for the trip, like we made some of our dinners beforehand and then ate them in the beautiful lobby.  The lobby had a fireplace that the kids enjoyed reading books by and the pool was also in the same area.

The first day we spent at Garden of the Gods, which is filled with amazing red rock formations.  The park is free to the public and we barely scratched the surface of all the exploring there is to do there.

The day started out cloudy and in the 40's, but after a couple of hours, the sun came out and it warmed up.  Just as we finished up a picnic lunch, it started raining and stayed that way for the rest of the day.

Michael didn't quite have the balance to stand holding the girl's hands so I tried to help him out.

Spence loved taking his shoes off and walking through this sand pit.

Sarah found some pretty fun rocks to climb on

And some pretty narrow places to explore

Mikey enjoyed climbing on the rocks with a little help. He's really into climbing lately so this was a perfect activity for him.

Whitney beat us all by climbing up the highest.  Tim helped the girls climb this one.  He wasn't sure whether to cheer them on or have a panic attack!

Spencer was content as long as he was either eating, or able to climb on or jump off of something, or pushing the elevator buttons.

Just seeing Whitney's confidence in this pic made it all worth it.  She's our one who has struggled with gross motor skills for years so climbing these rocks was a real achievement for her.

Who wouldn't want to spend a morning exploring this place?

The next day we stopped in Manitou Springs and visited the cliff dwellings there.  It was cold and windy but very memorable.

The kids loved the teepee of course

And climbing through the different Indian dwellings

On our last evening, Mikey was so tuckered out he fell asleep in Tim's arms.  It was so sweet. 

As we pulled into our driveway back at home in Fort Collins, Spencer moaned "I don't want to go home, I want to go to Colorado Springs!"  We made some great memories on our trip and we're so glad we went, but it sure was nice to finally get a decent night's sleep again in our own beds!