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!

Valentine's Day

A few people, including my OBGYN, have asked if I am concerned about the new baby developing brain cancer and if I am doing anything to prevent it.  This has been a good opportunity to explain and clarify a few things about Michael's cancer. 

First, the kind of cancer that he has is not something that could have been prevented.  It was not caused by anything that I did or didn't do in pregnancy, anything I've been exposed to or he was exposed to.  Second, it was not caused by genetic issues.  My kids do not have a higher risk of developing this kind of cancer than any other child. 

This kind of brain cancer that Michael has, as far as all the research has said, is purely a statistical anomaly.  As our doctor put it, "Each of us grows a brain, and there is always a certain percentage that something goes wrong."  Brain cancer like Michael's is not increasing within a population (yes, other cancers are, but not this one) but instead holds steady across any given population.  If there is any increase, it would very minimal and be due to better healthcare, such as in 3rd world countries with better doctors and advanced imaging equipment being able to detect it.  Before such equipment is a available, a child with brain cancer like Michael's is probably thought to die from some sort of intestinal disease because of the incessant vomiting (which we know is caused by pressure in the head, not by a stomach issue).

So no, I am not doing anything special for the new baby nor am I expecting brain cancer to happen again in our family.   But saying that, I will admit that there is a certain amount of anxiety that accompanies this pregnancy.  I'm sure every parent that has a child born with special needs or goes through what we have would have similar anxieties and worries that everything will be alright this time around.
 
Valentine's Day becomes so much fun as the kids grow older.  Everyone seems to get into it more and more.

This year we did a couple of fun things the kids loved.  Tim and I teamed up and made pink blueberry pancakes and trimmed them into heart shapes for breakfast.  Tim also picked up strawberry Hershey's syrup for their milk.  A friend gave us fun valentine plates and table cloth. 

 For dinner we made Fondue (reminiscent of the 18 months I lived in Switzerland as a missionary.  Just the smell of the cheese just makes me feel happy) and finished with a heart shaped jello cake topped with whipped cream and strawberries.

The weather has been so mild this year in Fort Collins.  This week the kids asked to take the easel outside to be inspired by nature for some painting.

And the kids couldn't resist turning the basketball hoop into a horse and riding it around the house.  The crazy/fun things that kids do!

Sarah had her 1st Grade concert at school and got to dress like a blue bug.  She was a ball to watch because she loved every minute of performing her show.  Whitney and Spencer have been dressing up like bugs since her show; there's nothing like whatever an older sibling does the younger ones think it's super cool.

What are little boys and girls made of?

This morning we had an ultrasound for the new little one joining our family. 

When Sarah came home from school this is what we had waiting for her:

She had a great time figuring out from the clues that we are having a little girl.

Spencer is the one who has been on the money from the beginning.  He's always insisted that he had a baby in his tummy too and it was a girl.  Of any of my kids, I would have gone with his pick.  He's always had a remarkable connection between heaven and earth.

In the meantime, Michael got a walker.

We've got to help him with it quite a bit, but it's a fun place to start. 

He was getting a little annoyed and tired by the end.  Who would have thought that seniors and toddlers alike would appreciate the invention of tennis balls.

For Family Home Evening, we made hearts with little notes to each other hung them around the kitchen:

There might be times it seems there is a lot of yelling and screaming and crying around here, but we also have a lot of love in this family.  And one more little girl gets to join us.

Watch me walk

We've had a couple of good days (and a couple of bad ones mixed in, but I'll start with the good ones).

We met with Dr. Arnold for Michael's eyes and he said that his eyes are "excellent" under the circumstances.   He explained it with an analogy he's used many times:  for most people, holding our eyes center isn't something we even have to think about, our brain just does it.  For Michael -  after his second brain surgery - it's like asking him to carry a 35 pound backpack, an impossibility for a baby.  The eye surgery couldn't take the backpack off, but it could make the backpack a 2 pound backpack instead of 35, something that he can do.  Hence after the surgery his eyes are so much better.  But when Michael is sick or tired or just doesn't want to carry that 2 pound backpack, his eyes (particularly his right) will drift in a bit.  That's normal. His vision is great under the circumstances - he can see distances and detail so much better.  And we will be following those eyes closely to see if anything else can be done in the future to help.

He's army crawling around the house and has a huge fascination for going up and down stairs (which we have to help him with, of course).  Since his eyes have improved, he's throwing a fit if he sees someone eating something that he's not eating.  I can't tell you how happy it makes me to see him throw a fit over something like that!

 Also, he got new "magic boots" or leg braces (called AFO's for ankle foot orthosis).  These ones are red instead of blue with bears on them and hinge at the ankle so they feel more natural to walk in.  No more feeling like he was trying to walk in ski-boots with the old ones.  We call them "magic boots" because what he is capable of doing physically is astounding when he has them on.  Since putting his new ones on, he has been lifting up his legs and walking!  It's been amazing.

For some reason he thinks Honey Nut Cheerios are the best treat during his therapy sessions.

Here I go!

Now I'm steppin' with style.

We have funny exchanges with people in public sometimes:

Nice lady:  "Oh, that little guy of yours looks SOOO tired!  I had two kids of my own and I know that look when their eyes and face droop and they just want to nod off."
Us:  "Actually, he looks like this all of the time."
Nice lady:  ".....!"
(we usually explain why)

We haven't been sure if Michael will ever be able to walk on his own and still aren't sure.  But while waiting for our eye doctor appointment, Michael wanted to walk around the waiting room even without his "magic boots" on.  While taking him around I was just about in tears watching this amazing miracle happen, when a nice elderly couple said, "Are you sure you want him to learn to walk so young??"  I replied, "Well, he's almost 19 months old and has had brain cancer for the past year.  Watching him pick up his legs and try to walk today is truly a miracle for this kid." 

Later a new tech took us back to the exam room for Michael's eye appointment.  She wrote down my concerns and then got out a light to check his eyes - I thought to check for range of motion.  But after several seconds she says:
Tech:  "Buddy, come on, aren't you going to blink at this light?"
Me:  "He actually can't blink"
Tech:  "What?!  What do you mean he can't blink?" (waving the light in his eyes)
Me:  "He can't blink.  He can't use his facial muscles and can't blink or smile" (what I wanted to say was "Stop!  You are hurting him!  Put that thing away!")
Tech:  (she quickly puts away the light and leaves the room)

Tim and another mom are watching Sarah's basketball game, while Michael and the other little baby are both practicing standing and interacting with each other.  The other baby was probably 5 or 6 months old.
Mom (to her little baby):  "Look, you have a friend!  What a cute little baby."  (to Tim) "How old is he?"
Tim:  "18 months"
Mom:  (gets an alarmed look on her face and quickly moves away before Tim can explain)

It gives me and Tim a good chuckle when things like this happen. 

Other more "normal" random things going on around here:

A few nights ago a horrible burning smell started coming from our dishwasher.  It took a couple more nights of running it and our house being filled with nasty smoke to discover that the wiring was melting inside of it!!  We are so lucky it didn't catch fire (found out that it's been a problem with our model!).  So we got the awesomeness of buying a new dishwasher although we won't have it up and running for at least another week.  It's been a great opportunity to teach the kids how to hand-wash dishes, a lost skill if you ask me.

Spencer has a totally horrible infected toe.  He's on anti-biotics now and we get to wrap that baby up twice a day.  He's had to be a pretty brave kid for awhile and we will find out in two weeks if he'll need some more minor work on it.  (last year it was healing those darn scabs on his face, this year it's the toe).  He spends his days riding his green bike around and around and around the house.

He also thinks he has to insert his play keys into his bike so it will go

Whitney has already decided her Valentine this year will be dad.  She made him a big fancy Valentine and gave it to him last week.  She's also counting down the days to her half-birthday.  For some reason, this is a super big deal to a 5-year-old.  It probably helps Tim in her book that they share the same half-birthday.  She's been struggling with fatigue and concentration issues for quite sometime.  After wondering if she was just becoming lazy, we are now looking into medical causes and have a couple of strategies in place we are giving a try.

Sarah thinks she's got a half-crush on a boy and made him a very fancy Valentine the other day too.  She wanted to give it to him in secret, but realized she couldn't, so she just gave it to him.  Thankfully, he was pleased, so the world is still turning for her.

We also are cracking down on routines, responsibilities, and asking the kids to step up around here.  We've had way too much whining, screaming, and fit-throwing when we ask them to do the simplest of things and we are far overdue for some changes around here.  Tim and I are crossing our fingers that our new charts and rewards will work for a long season instead of a brief one.

Tim still remains the ever popular parent around here.

Just TWO days and we discover if we're having a boy or a girl.  Stay tuned...