The Best Christmas Present Ever

I took Michael to Children's Hospital early on Thursday morning for his scheduled MRI.  It's hard to describe the feelings of anxiety whenever we take him in for an MRI.  "Scanxiety" is how many of us refer to it in the cancer community.  No matter how well or poorly they are feeling, you just never know what the results of the scan will be until until the oncologist walks in with the news.

In Michael's case, we are so grateful to report that his scan was clean!!!  Still no sign of his cancer returning over one year after his treatments were completed and two years after he was diagnosed.  At this Christmas time that was absolutely the best gift we could have received.  Not only that, but his scans will now be every 6 months instead of every 3-4 months.  Michael never will be completely out of the woods in terms of being at risk for a cancer recurrence.  He will need to have periodic MRIs for the rest of his life.  The first 5 years are particularly critical.  But as the time required between MRIs increases, so do his chances of long-term survival.

Hooray for a clean scan!!!

After the scan Michael had a hearing test.  The radiation damage increases his chances of hearing loss, so they want to periodically check his hearing.  It's interesting how they check the hearing of a 2-year old who has an incredibly short attention span.  Michael wore a set of headphones and sat on my lap in a sound booth.  One sound technician sat outside the booth and generated interesting sounds in his ears at different volumes and pitches.  Another technician sat in front of us and helped train him to look in the direction of where the sound came from.  Whenever he did, a toy on the wall would light up and make sounds and we would cheer for him.  Fortunately his hearing tested well within the normal range.  Another bit of good news for the day!

Liz threw out her back during the week and couldn't walk for a few days.  One of the days was Thursday when I was at Children's with Michael and couldn't help her.  We are fortunate to have a great visiting teacher and friends who helped with meals, running errands, and taking care of kids for a few days so that Liz could mend.

At this Christmas season we are so grateful for our wonderful family and friends.  We're especially grateful for our Savior Jesus Christ who has carried our burdens and continues to help us carry them as we walk this road called life.

MRI and IFSP

Michael has his next MRI on Thursday morning.  We're trying hard not to think too much about it, and hope and pray for another clean scan.

He also had his IFSP last week, which is basically when his therapists meet together to check on his progress and set some new goals.  His progress is very slow, particularly when it comes to speech, so we're rethinking our strategy.  He's working with two speech therapists now, and we're considering adding a third to help us with sign language.  He does most of his communication with us through signs that he has learned by watching Signing Time videos.  He appears to have so much he wants to tell us, but with his lack of coordination and our limited knowledge of sign language, it's really hard for us to know what he's saying.  We're hoping if we can get someone to help us understand Michael better, it will be huge breakthrough for us. 

We still plan on continuing with our other speech therapists, but we're having a terrible time getting insurance to reimburse us for the one in Denver.  We've paid thousands of dollars out of pocket for it so far and we've been fighting our insurance over it for months, but no luck so far.  We have an advocate through my work that we hope will help, but so far they're getting the run-around as well.  It's been an incredibly frustrating process.  We've temporarily suspended our weekly Denver visits until we can come to some sort of resolution.

There's a respite care facility in town that offers free babysitting for children with special needs and their siblings about once a month to give parents a break.  We decided to give it a try on Saturday, so we dropped the four oldest off for the afternoon.  Each of the kids gets a buddy, who is a volunteer assigned to be with them at the center.  They do crafts, play in the gym, make yummy snacks, and this time they even received a visit from Santa Claus!  Whitney told me afterwards she didn't think this was the real Santa Claus since his beard kept falling off.  Sarah said that when Santa asked her what she wanted for Christmas, she responded that she hasn't decided yet.  Santa gave her this look and told her, "You're running out of time, you'd better decide quick!"

The kids also said that some friends at church came to sing some Christmas carols while they were there.  We remembered seeing an announcement the Sunday before at church about seeking volunteers to sing carols at the respite center, but didn't put two and two together until our children told us about the visit.  They were nervous about going to the center and not knowing anybody, so we're glad they ended up seeing some familiar faces.

It was really eye-opening seeing some of the other children with their challenges at the respite facility.  Some of them have some serious challenges that make us grateful for the challenges we have with Michael.  At the same time, it dawned on us that there are probably people who think the same thing about us.  Some days it still hits us that having a child with special needs is our reality now.  We always thought it was the sort of thing that happened to other families, and never dreamed it would some day happen to us.  We're so grateful for our Michael, though, and wouldn't trade him for anything.  We're also so grateful we don't have to face these challenges alone.

Here are a few pictures from this last week:

Brooklyn warmed up nicely to the Wheeler grandparents last weekend and looked so cute sitting in her Bumbo and holding onto Grandma's finger.

We helped Grandpa celebrate his birthday while he was out here.  One of his favorite pastimes is water-skiing, so we decorated a water-skiing cake for him.

Whitney has to practice writing out her spelling words for school each week.  This week she got a little creative and drew pictures to go along with her words.

I got a particular kick out of the picture of her chicken, who apparently is either craving KFC or is thinking, "When I grow up I want to be a drumstick!"

Sarah's Baptism

Our 8-year old Sarah was baptized yesterday!  What a wonderful day for our family!  Both the Wheeler and Bellamy grandparents braved sub-zero temperatures and icy roads to be here.  We felt the love of our other family members who wished they could be here, too.  We appreciate the family, friends, neighbors, and even Sarah's piano teacher who came to support us on this special day.

The program began with Grandpa Bellamy teaching about the importance of baptism, after which I had the wonderful privilege of baptizing Sarah with her two Grandfathers standing as witnesses.  The water was warm, and Sarah just beamed as we gave each other a big hug.  As we changed into dry clothes they showed some short video clips: "I am a Child of God", "Things that Matter Most", and "Families Can Be Together Forever".

We had originally planned on having a special musical number sung by our children and their cousins.  Since the weather prevented the cousins from being able to attend Sarah's baptism, our Bailey friends (who are practically like cousins) joined Whitney and Spencer in singing a primary song about baptism.  It was the cutest thing ever seeing five young children singing so sweetly. 

Grandma Wheeler followed by teaching about the Holy Ghost.  She shared experiences our family has had with the Holy Ghost and asked us if we wanted to know what the Holy Ghost looks like.  Of course we all did, so she shared with us a children's book about the Holy Ghost.  The book explains that although we don't know what Holy Ghost looks like, we feel his presence like a warm blanket wrapped around us.  She then presented Sarah with the book and a warm blanket. 

After this, her Grandfathers and a few close family friends who hold the Priesthood joined me in giving Sarah a special blessing where she was confirmed a member of The Church of Jesus Christ of Latter-Day Saints and received the Holy Ghost.  Lastly, our bishop offered some kind words and officially welcomed Sarah as a member of the church.

Following the baptism service we invited those who attended to a light dinner and refreshments in our home.  We are so grateful for wonderful family and friends who made it such a special day!

A Memorable Thanksgiving

For Thanksgiving our plan was to drive out to Utah on Wednesday to visit Liz's family.  However, last Sunday Michael was throwing up and had a fever, and the eye he had surgery on looked terrible.  His eye was dark red and parts of his eyeball were really swollen around the surgery site.  On Monday his eye looked even worse, so Liz took him in to see his surgeon.  Dr. Arnold determined that Michael had an eye infection, but the infection was unrelated to his fever and throwing up, so it was likely he had the stomach flu as well.  Our poor little boy!  We put Michael on antibiotics and tried to come up with a backup plan in case driving out to Utah on Wednesday wasn't going to be an option.  Fortunately, on Wednesday morning Michael seemed to be on the mend, so we quickly packed up and made the trip.

On Thursday before the big Thanksgiving meal, Liz's sister Carrie and I took our three oldest kids and some of their cousins to see "Frozen" in the theater.  Whitney loved it so much she declared she wants us to rent it next August to show at her birthday party.  The Thanksgiving feast was absolutely amazing, and it was great having the entire Bellamy family together for it.  The prep and the cleanup took an incredible amount of work; I spent most of the day taking care of kids so that Liz could help out in the kitchen.

We were worried about the sleeping arrangements for this trip since there would be seven of us sharing two bedrooms, with Brooklyn and Michael being particularly terrible sleepers.  Sure enough, Wednesday night was a rough night with Brooklyn and Michael waking up frequently during the night. But Thursday night took the cake.  Both Sarah and Whitney came down with the stomach flu, so we were up most of the night cleaning up throw up (which of course further aggravated Michael and Brooklyn's night time antics).  Spencer slept through the whole thing.

By Friday morning both Liz and I had also come down with the stomach flu, so we tried to spend the day recovering as much as we could.  November is a big birthday month for the Bellamy's so we were supposed to have a big birthday party at Liz's parents house that afternoon, but on account of the illness we moved it to Liz's sister's house.  Our children were so disappointed they were too sick to attend, they had really been looking forward to it.

Fortunately it turned out to be only a 24-hour bug, so by Saturday our family was mostly feeling better, just in time for family pictures.  But unfortunately, by this time the flu had spread to some of their cousins, so we couldn't get everyone together for family pictures.  We got as many family members together as we could, and we're hoping the magic of photoshop will make it appear as though everyone was there.

We drove back to Colorado Saturday afternoon after taking family pictures.  We were really fortunate to have excellent weather so the trip went smoothly.  We arrived home just in time for Brooklyn to come down with the stomach flu on Sunday afternoon.  Better watch out, Spencer!

Our last night in Utah we put the three oldest kids on the couches in the family room, gave Michael his own room, and had Brooklyn in our room.  It was by far our best night of the trip, as we only had to get up every 1-2 hours with Brooklyn. After three nights without sleep, boy are we ever glad to be home from our vacation so we can finally get some rest! :-)

It was two years ago at Thanksgiving that we took this picture of Michael:

We felt that it really captures his enthusiasm for life, so it has been the cover photo for our blog for a long time now.  It was a week or so after taking this photo that he started experiencing mysterious symptoms that led to his cancer diagnosis a month later.  At this Thanksgiving time we are so grateful that Michael has survived and thrived and is still here with us today.  We are so grateful for doctors, family, friends, and even strangers who have helped us and continue to help us through the daily struggle that has become the new normal in our lives.  And we are especially grateful to the Lord who has blessed us with five wonderful children and who continues to watch over and bless our family each and every day.

Happy Thanksgiving!