Clean scan today!!!

Mikey's MRI was clean today!!! What an amazing and wonderful Christmas present for our family. I feel like we can start breathing again! He failed his hearing test, though, so after he recovers from tomorrow's eye surgery the next step is to take him to an ear, nose, and throat specialist to see what's up.

He couldn't help showing off his Santa beard and hat today, and even went around saying "Ho ho ho!" Except he says it "Oh oh oh!" He's such a fun kid.

Lots to be thankful for

Christmas is coming so quickly we haven't even had a chance to write about Thanksgiving!  It was wonderful.  Liz's parents and two of her sisters came to visit us for a few days for Thanksgiving.  Her sister Carrie had a birthday on Thanksgiving so we had twice the reasons to celebrate!

Liz ran her first 5K ever on Thanksgiving morning.  She's been training for it for several months now.  It was a local 5K held in our neighborhood, and we gathered together and cheered her on as she ran down our street near our house.  We were so proud of her for working so hard and accomplishing her goal.

 

Brooklyn enjoyed our breakfast feast on Thanksgiving morning.  She likes to close her eyes tight and open her mouth wide when we feed her.  It's the cutest thing ever, she looks like a little baby bird saying "Cheep! cheep! cheep!"

To help Carrie celebrate her birthday we took the family to the Swetsville Zoo near our house.  It has all kinds of amazing sculptures made out of old metal parts from cars, machinery, appliances, you name it.

 

After Thanksgiving we enlisted help from Liz's family to set up Christmas decorations both inside and outside the house.  The kids particularly love the new Christmas train we purchased this year.  And they always love spending a night sleeping under the Christmas tree.

Spencer absolutely loves his new Santa hat and beard.  It's a good fit for his jolly personality.

This coming week is a busy week for our family.  Our kids have the usual Christmas parties at school and wrapping things up for the holiday (both literally and figuratively).  Last week we discovered Spencer has a bad astigmatism in one eye and will be getting glasses to help correct it.  We've been having intermittent car problems that we need to get resolved before we do any holiday traveling. Etc, etc.

But all of that pales in comparison to the end of the week.  Michael has an MRI on Thursday to check for any cancer recurrence.  It's been a miracle that his scans have been clean for the last two years, and we hope and pray that continues to be the case on Thursday.  He has failed his last two hearing tests and will get another one after the MRI on Thursday to see he is experiencing genuine hearing loss as a result of his cancer treatments. Then on Friday, if Michael's MRI is clear, he goes in for eye surgery.  One of his eyes is still having trouble staying straight, so the surgery will shorten and reattach his eye muscle to help keep his eyes more inline and hopefully dramatically improve his vision.

Through it all we have so much to be grateful for.  It has been almost three years since Michael was diagnosed with a life threatening brain tumor, and it's really miraculous that he's still with us.  His challenges are staggering at times, but he brings our family so much joy.  We're so grateful for wonderful family and friends who are with us during good times and bad.  And we're particularly grateful for our Savior Jesus Christ, whose birthday we celebrate at this Christmas season.  He understands our burdens perfectly, for he has carried them himself. 

Celebrating a Happy Birthday (in more ways than one)

A few weeks ago we celebrated Sarah's ninth birthday.  Our little girl is growing up so fast!  Kate, one of her best friends from school, has the same birthday.  They're fascinated by the thought that they were in the same hospital at the same time, born just hours apart from each other.  It was a pretty low-key birthday this year, but Sarah really enjoyed it.  Especially being able to stay in her pajamas for most of the day.  She even enjoyed attending Kate's birthday party, and tried hard to be gracious and not too jealous about celebrating a friend's birthday on her own special day.

At church a few Sundays ago I was trying to help Michael keep quiet by writing letters and numbers on the magna doodle.  He's been able to sign his letters and numbers for a long time and enjoyed signing as I wrote them.  Then I tried writing words on the magna doodle so he could finger spell them.  The first word I wrote was MOM, and like a champ he finger spelled M-O-M.  But then he did the sign for mom!  He actually read that word!  Next I tried DAD, and he finger spelled it and did the sign for dad.  I wrote down harder words, like BABY, CHEESE, CRACKER, and ICE CREAM.  He read them all and did their sign.  He even read a few with two words, like HAPPY BIRTHDAY.  Liz and I were both in tears as we watched in amazement as our 3-year old read these words to us.  I wonder if the person speaking in church thought we were particularly moved by his sermon. :-)  As much as Michael can't do because of his disabilities, we never cease to be amazed by what he CAN do.

Here are a few other random pictures.

Whenever we get the ladder out the kids always beg us to let them climb it.  Michael and Brooklyn are no exception.

Whitney and Spencer dressing up as Mary.  Or shepherds.  Or something like that.

Halloween 2014

Halloween is here again!  Each of the kids picked out a pumpkin and we helped carve it up for them.

This year I took the kids to Utah for a long weekend to celebrate at the awesome annual Bellamy Halloween party.  I dressed up to look like I do most of the time - right out of bed in my bathrobe.  Reminds me of when I had to dash the girls to school early this week in my bathrobe.  I'm sure the neighbors think we are really weird.  The kids played musical costumes and rotated through a few this year.  I think only Sarah and Michael kept their same costumes. 

Sarah had her Halloween piano recital and did great.  She was an excellent Hermione for Halloween this year.

I also volunteered to help with Sarah's Halloween party.  The kids loved the "mummy wrap" game.

Whitney originally wanted to dress like a vampire princess, but after one night in that costume, she switched to snow princess instead.

Spencer started out as a pirate, then insisted on trying on Michael's cowboy costume, and then eventually settled on Iron Man.  He was pretty proud of this costume and I caught him at his Kindergarten Halloween party right before Michael had a major tantrum and we had to quickly leave to school after enough teachers came out of their rooms to check out what kid was screaming/wailing at the top of his lungs.

Michael made a really awesome cowboy this year.

Brooklyn transformed into the cutest little black kitty ever!  She is at such an adorable age, I just can't get enough of it, except when she randomly shrieks so loud it startles us.  Tim calls her "the drive-by screamer." 

We took the kids trick-or-treating at Tim's work (Intel) for a long walk from cubicle to cubicle to rake in the candy. We often give a lot of what we get at Intel out at night to those that come to our door.

It's a tradition every year to crowd Tim and kids into his cubicle and take a picture.  This is the one time of year we get to see where he works.

Happy Halloween!

YMCA

This week we spent four days at the YMCA of the Rockies, about an hour away from our home, courtesy of the GRACE program.  GRACE stands for "Giving Respite And Comfort to Everyone", and this year their focus has been on families dealing with pediatric cancer.  We stayed in a 3-bedroom vacation home, all of our meals were provided, and many activities were available free of charge.  Liz says that her favorite part was not having to cook or do dishes for 4 days.  Funny enough, even though we could eat for free at the YMCA dining hall, whenever the kids spotted the fast food restaurants in Estes Park they would ask, "Can we eat at McDonald's?  Can we eat at Taco Bell?  Can we eat at Subway?"  Sorry kids, maybe another time.

Considering it was mid-October in the mountains, the weather was nice and we were still able to enjoy some of the fall colors.   The view from our front porch was amazing, you can get a taste of it reflected in the windows in some of the pictures below.

"Vespers #23" our home away from home at the YMCA

We were soooo looking forward to getting away and taking a break from the grind of our routine.  This trip to the YMCA really hit the spot.

Our kids loved virtually everything about the trip and even managed to get along reasonably well.

There's a beautiful walking path around the lake in Estes Park.  At one point on the trail we saw dozens and dozens of elk, many of them up close.  A few nights later an elk was eating outside the kids' bedroom window.  Its antlers were banging against the wall as it ate, which woke us up.

Of course the best part about lakes is throwing rocks in them.

Even Mikey got into the rock throwing action.  You can see the rock he's throwing in this picture.

There goes another rock.  His throw isn't that great, so his rocks mostly went straight down.

Putting around on the miniature golf course.

Brooklyn mostly enjoyed eating the golf balls and climbing on the rocks.

Lots of fun rocks to climb near our cabin.

Can't tell if they're sitting on a beehive or the Death Star.

The kids called this rock the "Bear Cave".  If there were any bears that wanted to sleep there, clearly they have grown tired of little children climbing into their bed and have long since moved on.

The top of the "bear cave".

In addition to climbing rocks and playing in the dirt, we spent time at the pool, the library, the craft center, miniature golfing, reading, playing games, and ending each day with popcorn and a movie night at our cabin.  With so many fun activities available, we made a conscious choice to try to strike a balance between going out and having fun and just taking it easy and relaxing.


As we get back into our daily routine, we're trying to figure out how to continue physical and occupational therapy for Michael.  We've been very fortunate to have excellent therapists coming to our home over the last two and a half years to help him as he tries to learn skills we take for granted, such as walking and feeding himself.  Brooklyn, who is fifteen months old and is two years younger than Michael, has now surpassed Michael in most of his physical capabilities.  It's really eye opening to see how quickly and naturally a child learns these fundamental skills that Michael still struggles with.

We found out recently our insurance has decided to not pay for in home therapy for Michael anymore.  They decided that since he's obviously well enough to go to preschool he is no longer "home bound" and doesn't qualify for in home therapy.  Never mind that in home therapy costs the same as outpatient therapy.  Or that outpatient therapy just isn't feasible for Michael or our family right now.  We're appealing the insurance decision and are investigating other avenues to see if we can get funding for his therapy.  In the meantime, we're super grateful for his therapists and that we were able to get therapy funded longer than we originally expected.  Also, he gets brief visits from some therapists that visit his preschool each week, and we'll continue to work with him on our own at home as best we can.

School begins

Two years ago I couldn't have even imagined that Michael would go to preschool.  At that time, one of our doctors had told us he didn't expect Michael to live more than a year, so attending preschool seemed like a far-off dream.  And here it is.

Michael is attending a preschool that's about a 20 minute drive from our home.  We chose this preschool because the teacher, aides, and students all use and know some signs.  The teacher also speaks while she signs.  He wasn't too thrilled the first week of school and cried every day (and because he is so loud and screams when he cries, it startled several other kids in the class, which led to pandemonium every morning).  By the second week, he started settling in and the teacher told me that he was being his silly-self one day and got the other kids and teachers to all laugh at something silly he was doing.

He takes his shiny red walker and proudly walks to class. It's a miracle to watch everyday.  He goes M-TH in the mornings.  I have been focusing all my energy on getting him settled in school that I don't have many pictures so I will have to post them later.

The three oldest kids started at the same school this year.  This is the 2nd year we are at this school.

Spencer started Kindergarten.  He is half-day in the mornings as well and loves every minute of it.  This week he was "student spotlight" and just soaked up the attention from the class.  He is usually shy, reserved, and often over-looked, so the extra attention was like gold to him. 

Sarah started 3rd grade and is enjoying it.  It helps that we are at the same school we were last year so she has friends she knows this year.  She is in advanced reading and math classes and continuing with piano lessons.  Although she is very talented and driven, she burns herself out easily and so we've made a deliberate decision to keep her extra-curricular activities to a minimum.  She really just prefers to snuggle up in her pj's at home and draw, read, or make elaborate play set-ups.

Whitney started 2nd grade and is doing alright but with a few bumps in the road.  We aren't too happy with her math and reading placement this year. She's very bright but every year seems to slip a little further behind in school. She has a great teacher this year so we are hoping for a good year for her.  She and Spencer are also continuing with their Let's Play Music class.

For about 2 hours every morning it's just me and Brooklyn.  She takes a nap most mornings giving me a couple hours to myself to get some things done.  I haven't had time like this in several years.  It's amazing.