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!

Plastic Surgeon

Michael had his last brain surgery to remove his tumor almost a year ago.  That surgery damaged his sixth and seventh cranial nerves, which control some aspects of his facial movement (such as blinking, smiling, and shutting his mouth all the way).  We've seen a little bit of recovery in the last year, such as going from no smiling at all, to the right side of his mouth being able to come up a little, kind of an Elvis Presley "uh huh" look.  He's gone from not being able to blink at all to being able to partially close his eyes when he tries to blink.  And just last week he made a "B" sound for the first time, which is a miracle since it meant he was able to briefly close his mouth all the way!

The first year after nerve damage is typically when we should expect see the most improvement.  It's also the window of time when we have the most options for intervention.  We wanted to see what options were available (if any) for restoring movement to Michael's face, so on Friday we visited a pediatric plastic surgeon by the name of Dr. Deleyiannis.  Plastic surgeons specialize in the nerves and muscles of the face.

Because Michael's nerve damage occurred in the brain stem, where the nerves originate, our options are few.  One option we explored was nerve grafting, where the damaged facial nerves are grafted into healthy facial nerves.  The surgeon didn't think Michael would be a good candidate for this surgery, though.  It has a very poor track record for children in Michael's situation.  Another option is to graft a muscle from Michael's leg and connect it to his 12th cranial nerve, which is the one that controls biting down.  Michael is still too young for this very delicate microsurgery, but he may be a good candidate when he's a bit older (at least five years old).  Not sure if we'll ever go that route; and by the time Michael's old enough for it perhaps he can provide input to the decision as well.  So not a lot of options right now, but we're glad we checked and there are more options than we anticipated.

Sarah's basketball season has come to an end. Now both Sarah and Whitney are in ice skating lessons.

A phone camera helps alleviate Whitney and Spencer's boredom while waiting for Sarah's lesson to end.

 

Lately Spencer has developed a bit of a maniacal laugh.  For some reason it ALWAYS involves Michael, so whenever we hear it we hurry to see what he's doing to his little brother.  For example, a few weeks ago Spencer decided to play bowling with Michael.  That is, he used a great big yoga ball as his bowling ball, and Michael as the bowling pin.  Every time he knocked Michael over he'd let out a big "bwaa-haa-haa-haa!", sit Michael back up, and do it all over again.  Another time we caught him dumping water on Michael's head in the bathtub, which is particularly awkward for Michael since he can't blink.  On another occasion Spencer had covered Michael with his blanket and was hitting him with a yardstick.  Spencer really is the sweetest kid and loves Michael dearly.  For a three year old boy, this must be how you show a younger sibling just how much you love them!