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!