One Year Club

Early Thursday morning Liz drove Michael down to Children's Hospital in Denver for his MRI and multidisciplinary clinic, which is basically visits with lots of different doctors and specialists.  We had a bit of a hard time finding a babysitter who could watch the other four kids all day, but a good friend from our previous ward jumped in to help at the last minute.

Michael has had a bad cough the last few weeks and we were concerned about having him sedated and being able to hold still during the MRI with his cough.  We called an anesthesiologist friend of ours to ask his opinion, and he thought Michael would probably be okay, but it's really up to the anesthesiologist on duty.  When Liz checked in at the hospital, the anesthesiologists were very concerned and didn't think Michael should go through with the procedure because of his cough.  They thought there was a good chance they'd have to put Michael in a very deep sleep and intubate him, which could mean he'd have to spend the rest of the day and all night at the hospital recovering and miss all of his clinic appointments.  Liz calmly explained that if Michael didn't get the MRI, he'd miss all of his appointments anyway since they're contingent on the results of his MRI!  Not only that, we had no idea how long the cough would last and it could be months before he could get in for another scan.  What if they refused to scan him and there was something there that needed urgent attention?  The anesthesiologists were very displeased, but agreed to at least try.

Back at home we were doing a lot of praying for Michael that he'd be able to proceed with the MRI.  He'd received a priesthood blessing just before leaving for the hospital as well.  Miraculously, everything went perfectly during the scan, he didn't cough a single time, and the scan was clean!  Still no signs of cancer recurrence!

Survival statistics for Ependymoma are tough to come by, particularly for children like Michael who was diagnosed at such a young age.  We've heard some estimates that Michael had about a 20% chance of survival when he finished his treatments nearly 3 years ago.  Since Michael has gone without a recurrence for 3 years, his chances of long term survival have increased substantially.  His oncologist estimated Michael now has about a 65% chance of survival if he remains cancer free 3-7 years after treatment.  It goes up to about 85% if he's cancer free for 7+ years.  At that point the chances of his Ependymoma recurring are slim, but he becomes more likely to develop secondary tumors and other complications.  So he's never going to be completely out of the woods, and he'll need scans for the rest of his life.  But it does mean he has moved on to the "one year club", meaning he only has to get an MRI once a year now rather than every 3-6 months.

One of his doctors visits that day was with an ENT (Ear, Nose, Throat) specialist to evaluate Michael's hearing loss.  One major cause of his hearing loss is some blockage in his ears due to radiation induced scar tissue.  The doctor recommended putting tubes in Michael's ears for the next year to allow fluid to drain, and to have his adenoids removed to help prevent fluid accumulation in the future.  We'll likely do the surgery sometime in August.  Incidentally, the doctor also diagnosed his mystery cough as an upper respiratory infection and prescribed some antibiotics.  We had taken Michael into his pediatrician a few weeks ago to try to get the cough diagnosed and taken care of before the MRI, but the pediatrician misdiagnosed the problem as allergies since Michael's lungs were clear.  Also, the ENT specialist said that knowing now what was causing Michael's cough, he would have strongly advised against the MRI!

Michael had appointments with a host of other doctors and specialists that day, including a neurosurgeon, ophthalmologist, psychologist, oncologist, endocrinologist, and rehab specialist to name a few.  The one appointment we weren't able to schedule was a hearing screening, so Liz was planning to have to bring Michael back later.  Fortunately, the ENT decided to do a hearing screening as part of his visit, so even that was accomplished!  Another answer to prayers!

As expected, Michael registered mild to moderate hearing loss in both ears again, which hopefully the tubes in his ears will help mitigate.  On a positive note, the hearing screening ensures that Michael will be able to attend his sign language preschool again in the fall.  We were getting a lot of push back from the school district about keeping Michael at McGraw since hearing loss isn't considered his primary disability.  Never mind that he has many disabilities, and that sign language is his primary form of communication.  So having evidence of hearing loss actually helps our cause in a big way.

Another thing we learned is that the radiation damage to Michael's pituitary gland means he isn't getting proper hormone levels.  One hormone we'll need to address in the near future is growth hormone.  Soon we'll need to administer daily growth hormone shots to Michael during his growing years, which could be the next 15-20 years.  We're not looking forward to that.  But one potential upside besides helping him grow properly is it could help improve his energy levels.

Overall, the doctors were very pleased with Michael's progress.  They believe that eventually he'll learn to walk and talk.  It's still unclear how well he'll be able to do either of those, and how well he'll be understood when he does talk.  He continues to make slow progress, but it's progress in the right direction and his rate of improvement in the last few months has increased.  He's more interested in talking now, and between his speech and signs we can understand a lot more of what he's saying than ever.  He's such a brave, miraculous little boy who continues to beat the odds.  We're so happy to have him in our family!

Yea for a clean scan!!!

Some improptu family pictures we took one Sunday after church

Brooke is always so excited for bath night she doesn't bother waiting for us to help her get undressed

Spencer and Michael clowning around

This volleyball net was a Christmas present.  We finally had a sunny weekend we could set it up

Taking a break during a bike ride to the Fort Collins temple site

Disneyland!

It's been awhile since we've been able to post, so here is the low-down about our D-land trip!

We have wanted to go to Disneyland for a couple years now and finally made it happen! Tim scouted out several online sources to determine the least busiest times at the park and we picked the middle of April.  It was still fairly crowded, but we used fast passes and stroller passes with gusto and the weather was great.  Liz's parents and two of her sisters also joined us to give us a hand with our crew.  We flew out Sunday after church and arrived in time to meet up with Liz's family at our hotel for dinner.  Our hotel was right across the street from the park, so we didn't even rent a car, but walked back and forth everyday.  Our rooms were all in a row so it was a lot of fun for the kids to go in and out of them as they wished.  Julie made us all matching shirts that said "Wheebells," a combination of our last names.  The "W" and "B" were circled as well as the "S" for "sickies", just kidding.  I actually forgot why it was circled, but it had something to do with Liz's dad being in the middle of chemotherapy for cancer during our trip, and Michael going through all he goes through, and we still went to Disneyland and had a great time!  My parent's had a car so the first morning we were there, we stopped at a store and bought a whole bunch of food to make lunches and things to snack on.  We ate breakfast at the hotel, then packed in our own lunch and usually ate dinner somewhere in the park.  In between rides we kept the kids happy with lots of snacks. 

We spent Monday, Wednesday, and Friday in Disneyland, and Tuesday and Thursday in California Adventure.  The first day at Disneyland we spent most of the time on rides like Big Thunder Mountain Railroad, Pirates of the Caribbean, the Haunted Mansion, and Indiana Jones.  The younger kids enjoyed the Tiki Room and Big Thunder the best.  That evening we all went on "It's a Small World" which the kids loved a ton.  Michael and Brooke spent the entire ride dancing.

On Tuesday, we took all the girls to the Princess Breakfast.  It was a fun experience, but pricey.  Just before the first princess came to our table, one of my girls suddenly had a melt-down over something (I'm actually not sure what it was) and was in tears when Snow White arrived.  Then she was too embarrassed to greet the princess and get a picture with her.  I wanted to say, "I paid a lot of money for this, so put yourself together right now and throw your tantrum an hour from now!!"  But of course, like a good mother, I just stroked my daughters hair as she sobbed in my lap and said, "there, there," while giving the princess an informative smile.  And then, just like when Mary Poppins snaps her fingers, my daughter was done with her fit and was fine when the other 3 princesses arrived at our table. 

To be honest, the rest of the trip was a blur, so I'm just going to list memories and highlights from the trip: 

The girls' hands-down favorite ride became the big roller coaster at California Adventure.  Spencer's favorite ride was Star Tours, although he hated any other ride that "moved fast."  Brooklyn, who we were considering not bringing on the trip because of her reputation for being grumpy quite a lot and not sleeping well at night, was actually really good for the trip and even managed to sleep most nights.  Liz never, ever throws up, but came pretty darn close on the Mickey Ferris Wheel in the rocking cart -we were so grateful they had doggy bags in the carts.  Liz's parents took us to the Rainforest Cafe for Liz's birthday, which was a great atmosphere, but very slow service.  We had time one night to get pizza and swim in the pool at the hotel.  The kids decided for their souvenirs to buy small Lego sets from Downtown Disney.  Tim ran all over the park to get fast passes and kept us going from ride to ride.  My mom wore a pedometer which said we walked 7-9 miles everyday.  Michael became Aunt Julie's buddy right away and loved being with her.  Brooklyn became Aunt Carrie's buddy and enjoyed riding rides with her.  Michael danced anytime the music got started, and especially when we had front-row seats to a parade in California Adventure.  One time while we were walking to a ride, he heard music playing and stood up in his stroller to dance and fell out and hit his head.  Brooklyn singing, "Let it dho" and showing some serious dance moves in the Tiki Room.  Whitney loving the front seat on splash mountain and her big grin after she got super wet each time we rode it.  Sarah not missing a detail of the park and asking to go on Big Thunder again, and again, and again.  Sarah also loved having her own camera along and loved taking tons of pictures.  My dad getting picked as the "spy" in his Star Tours ride, and my mom being the best artist among us in the drawing class we took together.  Watching fireworks from the balcony of our hotel. Spencer constantly asking if a ride was "slow" because he was scared of anything that was fast. 

It took coming home and thinking about it to decide it was a great trip.  There were a lot of stressful moments, logistics, disasters, tears, bumps and bruises, but in the end, it all came out as great!

Brooke actually slept on the trip!  We took a bed sheet along and hung it around her crib to help her sleep.

When we arrived the park the first day, Whitney got selected to dance with one of the chipmunks!

They let Brooklyn join in their dance and Brooklyn loved it so much.

Our matching shirts sure made it easy to stay together.

Spencer and Liz on the Dumbo ride.

Small World - Aunt Julie with Michael

Princesses!

At the princess breakfast.  The food was amazing.

Waiting for a parade to start.  The kids LOVED the parades!

Whitney and Mikey dancing during a parade.

Mickey Ferris Wheel

Yummy ice cream cone during a hot afternoon

California Adventure

Rainforest Cafe to celebrate Liz's birthday

Yea for Disneyland!!!

Spring Break

The kids started their spring break two weeks ago so we went to Colorado Springs for a few days.  This has been our annual tradition the last few years and the kids really enjoy it.  We stayed at the Academy Hotel again, which the kids love because of the large indoor swimming pool and great breakfast. 

Our family is getting large enough we decided to try out a 2-room suite this time and are glad we did.  The front room had a small closet area covered by a curtain that was the perfect size for Brooke’s pack-n-play.  Sarah and Michael slept on a very comfortable pull out bed in that room the first night, and Whitney and Spencer slept on it the second night.  On the alternating nights they slept on the extra queen bed in the bedroom.

The first day of our trip we visited Cheyenne Mountain Zoo and had a blast!  We think it’s much better than the Denver Zoo.  They have a sky lift that takes you up the mountain where we discovered a playground and breath-taking views of Colorado Springs below.  Many of the animal exhibits were well done, and the mountain terrain added a nice touch.

Some of the life sized animals were difficult to distinguish from the real animals

Riding the sky lift

Dad and the other kids aren't far behind

We made it to the top!

Which animal exhibit is this?  Must be the monkey bars!

Next spring break, let's fly instead of drive to the zoo

The best exhibit by far was the giraffes.  The hilly terrain and platform surrounding the exhibit put us face to face with the giraffes.  The kids enjoyed petting the giraffes and feeding them lettuce leaves. We were amazed by their long tongues and gentle demeanor.

Brooklyn, as always, kept us on our toes!  We ate lunch at a picnic area near the carousel.  Brooklyn had gotten out of the stroller, and when we looked for her a few moments later, she had somehow squeezed through the iron fence and was standing only a foot or two away from the carousel while it was in full motion!  We knew she would likely run away and towards the carousel if we called out to her, so I quickly ran over, reached over the fence, and snatched her to safety.

On the second day of our trip we visited Garden of the Gods, where we enjoyed the beautiful scenery and the kids enjoyed climbing on the red rocks.  It’s amazing that we don't really need a fancy, expensive vacation for the kids to have a great time.  All they need is some fun rocks to climb.

Last Friday Liz took the 3 older kids to Snowy Range, Wyoming for a day of skiing.   They went with our friends the Baileys and had a wonderful time together.  The weather was beautiful and our kids are starting to get a lot more comfortable on skis. Spencer was the most fearful after crashing into some netting the last time he went skiing.  But with a lot of patient coaxing and encouragement from Liz and the other kids, by the end of the day he was happily skiing down some of the slopes like a pro.  Our home teacher and his wife were very kind to watch Michael and Brooklyn during the day while I was at work.

Yesterday we drove down to Pueblo for our nephew, Aaron's baptism.  We're so proud of him and loved spending the day with my sister Becky, my parents, sister-in-law Gina, and other family members and friends.  The day went by so quickly and it was so hard to say goodbye and drive home at the end of the day.

President's Day

On President's Day last week we told stories to the kids about George Washington.  Mikey started doing the sign for "wash hands".  We thought for a moment what he was trying to tell us, then realized he was signing George Washinghands!

It's been an unusually warm winter so far.  While my coworkers on the East coast have had several feet of snow dumped on them, our children have enjoyed sunny picnic lunches on the front porch:

We got a few inches of snow this weekend.  But while the weather was warm and to get into the seasonal spirit while she was visiting us, Liz's sister Carrie helped us decorate the inside of our house for winter.  She's home now, but her decorations still remain:

Icicles hanging down

Snowflakes falling from the ceiling

Each of us had our own snowman the kids helped make

Liz recently had a chance to visit Mikey's preschool and watch him in action.  He really enjoys it and is making progress both in his signing and in his speech.

Michael loves this large round mat with the alphabet and numbers written and drawn out in sign language

Painting time!

Painting a boat

Matching words with pictures

This is Michael's favorite toy right now.  We used to have one just like it years ago and gave it away since nobody played with it.  Dang.  Maybe we should see if the thrift store we gave it to still has it. :-)

Sarah's 3rd grade class recently put on a show called "Pen Pals" which depicted children from around the world. Sarah sang a solo and had some speaking parts as well. Our kids are still singing and humming the songs in different languages.

Sarah moved into Michael's room recently and has been the best big sister.  Sometimes at night when he's scared she lets him crawl into bed next to her.

The Fort Collins temple is coming along nicely.  The outside work is absolutely beautiful.

Can you tell what holiday we just had?  Our family wrote love notes to each other one night for Family Home Evening and we stuck them all over the kitchen.

Brooke sure is growing big and strong.  Could it be from all the milk she's drinking?  She still has a dairy allergy, but it's getting a little better.