Dad says my nickname is "Stitches"

Gruesome alert . . . even when I look at these pictures for the 50th time, I get the same jolt of nerves that shocks me from the inside out from complete dismay and disgust . . .

My poor, sweet Gavin.  We've pushed him so hard to use his canes more (otherwise known as arm crutches).  He's even got a deal right now with Jeff that he can earn $1.00 for every day that he uses his canes all day.  Gavin is working hard to earn enough money to buy a new game for the Wii.  And, he's been dedicated.

But, let's face it.  His canes are not as stable as his walker or his wheelchair.  And, he's five.  So, he's not the most observant.  He doesn't notice papers on the ground or a welcome mat or countless other things that trip him up.   And, he definitely doesn't notice little spots of water.

At his back-to-school night, Gavin was valiantly walking through the halls - gathering the typical stares and smiles of admiration.  The administrators had blocked off the corner with tables to sign up for PTA - making the corner tight around the water fountain.  And, just as we rounded the corner, I yelled for Gavin to stop.  But, it was a split second too late and he was down on his knees, angry that I had not given him enough warning.  Because - as you could guess - he's very sensitive about feeling so unstable.  He gets really upset when anyone makes him feel off-balance.

So . . . back to this Friday's events.  Jeff and I - and the babies - all went to school in the morning to volunteer at the school's Walk-a-thon.  We walked/spun with Gavin (in his chair) and jogged/walked with Autumn (who, by the way, set a goal the night before to get 10 laps - and was so proud that she accomplished her goal . . . and Mommy was super proud that she followed through).

Afterwards, Jeff grabbed lunch with Johnny and I took care of the boys.  While I was putting Gage down for his nap, he coughed so hard he puked everywhere.  Yes, everywhere.  After his bath, my wash down and a fresh change of clothes for everyone, the glider and the floor . . . I finally went to the library to work on an uber big report that was due by the end of the day (since Jeff had cancelled our internet access the night before - to set up a new one on Monday).

About two hours in, Jeff sent me a note to come home and feed Garrett.  I called Jeff on the short drive home and heard those dreaded words a minute into the conversation, "I GOTTA GO!"

I walked in to see Jeff wiping up the last drops of blood from the floor.  I wasn't even sure who or where he was referring to when his first words were, "he's going to need stitches."

This is why . . . prepare yourself . . .

I scooped Gavin up into my arms and rocked him like the baby that he is.  I wanted desperately to go to the hospital with him - but, Jeff needed me here with Garrett.  So, I watched them go and started calling the doctors' offices immediately to find the fastest and best solution for him.

Gavin was a trooper.  He came home happy as a clam.  He never complained about it again.

He showed me his stitches and described, in his five-year-old way, that his whole chin was numb.

The next day he said that his chin tickled.

This kid amazes me.

But, I'll be honest . . . part of me wants to put those canes up high on a shelf and revert back to something else way more stable.  I told him he was not allowed to fall again.  Ever.

But, he also has a way of not listening exactly.

I can live with tough love.  With pushing him beyond the limits that he thinks he has.

But, I've had to watch on the sidelines as he cries through difficult medical procedures.  To watch as he stays behind when the other kids go somewhere that even his canes can't take him.

And, I'll be honest.  It's awful.  My heart aches for him.  And, I try to make sure that all he sees on my face is a smile of encouragement . . . when I'm just crumpling inside.

Yes, I cried on his first day of kindergarten - like so many other moms - as he got on that big yellow bus.  But, I also cried three days later when I watched him be lifted up on the automatic lift (because the district refuses to let him work to get up the first step) and bravely maneuver to his seat.  To sit alone.  Every day.  On that big yellow bus all by himself.  Not one single friend that can sit with him.  Ever.

Oh man.  That's tough.

I've got a lot to learn from Gavin about courage and attitude and perseverance.  He's amazing.

Attitude is everything (*she says with a lump in her throat*).

Gavin's Birth Announcement and Updates from 2007

I have always viewed this blog as a sort of journal for our family.  This site houses the random things as well as the important events that mark our lives.  I was searching through old files and discovered the original emails I distributed when Gavin was born.  I wanted to include them here on the blog as well . . . if nothing else, for my own records. 

 Announcing Gavin Jeffrey Peterson

  

  

Hi everyone! I am finally able to give you an update
on our new baby. Gavin was born on March 1st in the
Heber Hospital at roughly 2:15pm. As soon as he was
born, the doctor discovered that Gavin has spina
bifida. He was immediately Life Flighted to Primary
Children's and underwent major surgery to repair his
spine on Friday. 

Spinda bifida is a defect of the spinal column that
occurs in the first 28 days of pregnancy, when the
spine does not close properly. The bones do not come
together and there is no skin covering the open part
of the sinal cord. Gavin has the worst kind of spina
bifida, called myelomeningocele. In this case, the
bones and nerves portrude and are completely exposed.
We were lucky that his defect was low on his back and
will likely only affect his hips down.
The doctors were pleased with the surgery but are also
coaching us that Gavin will likely not have the use of
his legs. He has a strong set of lungs and tremendous
upper body strength which will be very helpful in the
coming years. Other than the physical nature of his
defect, he has strong vitals and has never had
assistance breathing, etc.
My doctor discharged me as early as possible on Friday
morning so that I could spend the week at Primary's
with Gavin. We were finally able to come home this week.

Gavin's condition was not picked up on either of the
ultrasounds that were conducted and all signs pointed
to a completely normal and healthy baby. As I'm sure
you can imagine, we were completely shocked by the
news and needed a few days before we were able to
communicate with family and friends.
The next hurdle is monitoring him closely to see if
hydrocephalus develops, where excessive spinal fluid
builds pressure in the brain. Roughly 80% of spina
bifida patients have hydrocephalus and have a shunt
(or tube) surgically inserted into the brain with a
tube that passes under the skin all the way into the
abdomen. Gavin's neurosurgeon was hopeful that Gavin
may avoid this next surgery. But, we may not know for
weeks, or possibly months. In fact, most aspects of
Gavin's development are a "wait and see."
Our little Autumn is thrilled to have her baby brother
home and is even more excited when given the chance to feed him.

Jeff and I both are doing much better now and love our
little baby like no other. His special little legs
don't look unfamiliar to us at all. We are trying to
learn as much as possible and have millions of
questions - as we're sure you do, too.
Feel free to call or email. Please understand if it
takes a few days to respond. 
We have been overwhelmed in a good way by the support
and response we have received and appreciate every
thought and prayer on behalf of our family.
Jeff, Karen, Autumn and Gavin Peterson

 

Update on Gavin 3-23-07

We have had several appointments this week and last
week at Primary's as they watched Gavin closely as the
pressure and fluid seemed to build. On Wednesday, the
neurosurgeons still said that Gavin was borderline in
need of the shunt - and they were still trying to hold
out hope that he might avoid the surgery. Last night
at about 11:30pm, I noticed clear spinal fluid leaking
from the incision in his back. This was a dangerous
warning sign that the doctors warned us about. We
rushed him in to Primary's and they are placing the
shunt in his head today.
Hydrocephalus is an abnormal accumulation of spinal
fluid that builds within the ventricles of the brain.
Because Gavin's body was accustomed to draining the
fluid out of the opening in his back prior to his
first surgery, we had to watch him closely to see if
his body could regulate the spinal fluid on its own
after his spine was closed. Normally our bodies
produce spinal fluid on a continuous basis and it is
absorbed back into the blood stream. With spina
bifida kids, this balance is interrupted.
A shunt is a flexible tube that is placed in the
brain. Gavin will have an incision in his scalp,
behind his ear and in his abdomen. The tube will be
tunneled under his skin between these incisions and
will end in his abdomen, where the fluid can be
reabsorbed into the bloodstream.I think we all knew of the likelihood that Gavin would
require this surgery . . . unfortunately, as a mother
of a three week old infant that is having a second
major surgery . . . I am clearly devastated and not
handling it as well as I had hoped. Nevertheless, we
have developed an even stronger love for Gavin than we
thought possible and will do anything we can to
protect and care for him.
Again, thank you so much for keeping us in your
thoughts and prayers.
Please accept our apologies for not calling everyone
back or responding to emails . . . but, please know
that we sincerely appreciate everyone's support.
Again, I have attached a few pictures that our friend
took of the family at our house this week. Thank you
again, Sherry!
Jeff, Karen, Autumn and Gavin

Update on Gavin 4-17-07

Gavin is already six weeks old. He's growing so fast
and weighs over 11 pounds. Since our last update,
we've had one more stay in the hospital. Within 24
hours of coming home after the shunt surgery, we saw
fluid once again leaking from Gavin's back incision
and were back in the hospital for three more days.
They had what would have been his 3rd surgery
scheduled two days in a row and ultimately decided to
delay and hope for the best. So far, we've set a
record for time at home and have definitely enjoyed it!

Our last visit to the Spina Bifida Clinic at Primary's
was this past Friday. His incisions are all healing
well and they are pleased with the progress his legs
have made. They are relaxing more and more and we can
even see slight bend in his knees the "right way" from
time to time (they still hyperextend). We have weekly
visits from the occupational and physical therapists
in the Early Intervention program and have been
coached to "get creative" in the way we stretch his
legs. They have us on the calendar to start casting
his knees and feet on May 4th to hopefully loosen the
joints and see what progress can be made before the
inevitable surgeries begin.

Gavin will also have a comprehensive bladder and
kidney exam in the next few weeks to determine
pressure, the possibility of reflux, and kidney
function among other things. Almost all children with
an open spine in the lumber/sacral area have bladder
and bowel issues - and many are ultimately on some
form of a catheterization program.
Gavin is truly one of the sweetest and calmest babies
I have ever seen. He is very mellow and literally
will go days without crying (of course - even this
stroke of good luck makes me a bit anxious). However,
I'm taking full advantage of his temperament,
especially since Autumn needs (and demands) the attention.

We are still working on arrangements for my return to
work. We don't want Gavin to attend day care and are
trying hard to work out our schedules so that one of
us is always home with him. Wish us luck!
Again - I'm very sorry that I have not been returning
individual emails. Somehow the time slips away too
quickly . . . But, we absolutely love getting your
emails and hope that you will continue to write, call
and visit. Please let us know what questions you have
. . . we are constantly learning too!

We wish you all the best!
Love,
The Peterson Family
Jeff, Karen, Autumn and Gavin

A new little Peterson baby

Today was our 20 week ultrasound for #4.  After going through the experiences we did with Gavin . . . it seems so trivial to even wish for a certain gender or anything else beyond 'healthy' and 'developing normally.'

But, our sweet little Autumn was 100% praying for a little baby sister.

And, although Jeff and I felt almost guilty for hoping for a girl . . . for Autumn's sake . . . we did just a little.

We always focus on Gavin and the trials that he goes through individually.  But, it should never be overlooked that this situation is incredibly difficult for Autumn as well.  She is the one that waits for Gavin, pushes him in his walker or wheelchair, endures countless hours at the hospital and doctors' offices and generally experiences a different kind of life than other little girls.  At every Spina Bifida event we attend, we always hear about the impact these special kids have on their siblings.  It is something we can't avoid, but we try to always consider.  His big sister waiting at the end of the hall for him was the only reason that Gavin even started using his walker.

So, even though I felt almost 100% sure that we were having another boy . . . I was kind of hoping that she could get the little sister that she had been hoping for. 

She told us that she would pack up her things and run away if we were having another boy.  She was looking ahead to the day that she might have to actually babysit three 'pesky boys' with dread.

When we arrived at the hospital for the ultrasound, Jeff took a quick picture of Autumn with fingers crossed and a hopeful smile on her face.

Within the first 10 seconds of the ultrasound . . . it was confirmed in an obvious way that #4 was indeed another boy.

Autumn spent the rest of the appointment waiting on the other side of the curtain in total despair.

The whole family went to lunch afterward and I explained to Autumn how special it was to be the princess of the family.  I reminded her of our special girls' nights and pedicures and crafts and all of the pink and frilly things that she loves.  I also suggested that she was one of the toughest girls I know - and that she needed brothers to try to keep up with her on her dirt bike and her snowmobile.  And, I topped it off by suggesting that she would never have to share a bedroom.

And, then I saved my own few, guilty tears until a little later in the day . . . when Autumn and Gavin were happily playing at a friend's house.

I couldn't be happier that Gage will have a brother so close in age.  I hope that they will be little buddies forever.  And, I'm so extremely happy that so far the baby looks healthy.

But, if I truly admit it . . . I can't stand the thought of getting rid of Autumn's clothes.  But, it's not about the clothes.  It's about my little girl.  And, the small little hope in the back of my head that I might have a little bundle of pink one more time.



And, I really, really wanted - for Autumn's sake - for her to catch a little break and get her wish.

In the last 3 1/2 years, Autumn has lived in two countries, four houses, gone to three different schools by first grade and had one new baby added to the family. She has gone through quite a lot for a six year old.

I spent some time tonight looking back through pictures of Autumn and Gavin. Oh to relive those days of my sweet, crazy little princess.

Although she desperately wanted a sister, Autumn is so sweet to her little brothers.  At six, she's the best helper for Gage.  And, loves to take care of him without my asking.  She loved Gavin from the start.

 

Our little girl constantly keeps us on our toes.

But, everything pink aside . . . we have some cute little boys in our house.  And, we absolutely adore them.  Even though Gavin's first year was riddled with unusual circumstances . . . man, that kid was a sweetheart.

And, then there's our little G-man.  Could a kid get any cuter?

 Honestly, I just think it will be so fun to grow our family and to have a little newborn of our very own to hold one more time.  I feel so grateful for the little angels we have and can't wait to meet our new little Peterson.

And, truth be told . . . Autumn is very likely to get a baby girl kitten for her birthday.  Small consolation for not getting a sister . . . but, we're hoping it might help.

Pioneer Day Holiday Camping Trip

Over the years, I've transformed from a backpacker who used to hike into the mountains for days and filter my own water . . . to a mom of three that appreciates the conveniences of a trailer.

I am lucky to be involved in a Spina Bifida Moms' group where I gather ideas and support from other parents who have children with unique needs.  The timing of our first meeting was perfect . . . I called Jeff on the way home to discuss the need for Gavin to have his own private bathroom and toilet.  We were nearing the final stages of our house plans and had drawn in one bathroom for Gavin and Gage to share.  After talking to the other moms, I realized how critical it would be for Gavin to have his own, uninterrupted space . . . especially as he grew older.  And, we were able to quickly make a change to our blueprint.

The other realization from that initial meeting was that our traditional style of camping would be transformed as Gavin aged and his bathroom needs changed.  There are certain things that you just can't do with a cooler of water and a bottle of sanitizer and a shovel.  So, we began the hunt for a trailer to accommodate our changing family needs.

The trailer is an integral part of our developing family plan.  I was fresh off of a day away at a Power of Moms conference with 100 other moms, Richard and Linda Eyre (NY bestselling writers of various parenting books who I absolutely LOVE), and other members of their family, where we discussed the importance of family identity and culture.  And, we had just been privileged to visit with Aaron Hicken's cousin's family, an amazing family, during Spring Break, near St. George. Jeff visited them once before on a dirt bike riding trip.

Within an hour of being at their home, I started asking them a million questions to learn their family secrets.  They are everything I hope to be as a family.  Their teenagers even hung out with us willingly, virtual strangers, on a Saturday night.  And, their answers were somewhat simple . . . they said something I won't forget. "We just love spending time together as a family."  And, the kids adamantly shook their heads in agreement!!  They have a fairly structured schedule, specific days of the week where friends can play, chores that are expected, and very regular family trips in their trailer.

They are exactly the kind of family we want to emulate.  So, Jeff and I made some decisions.

I'm not so naive to think that getting a trailer alone is the answer.  It's the decisions you make as a family to spend time together.  We asked ourselves, what do we want our kids to remember about their childhood when they leave our home.  And, we want them to remember us being together.  Making memories the old-fashioned way, with sticks, dirt, marshmallows and a frisbee.

Of course, we would have been absolutely content with our massive Costco tent.  But, we don't have a typical family . . . we do have special needs.  And, we want to do whatever we can to ensure Gavin has the same experiences that every other kid should have.

So, Pioneer Day/Weekend was our first trip together in our new (used) trailer.  And, it was wonderful (minus the mosquitoes and the most aggressive flies we have ever encountered).

Waiting 9 to 5 . . . what a way to make a living . . .

Our first official night in our new house wasn't in our new house at all.  It was in the ER of Sick Kids hospital.

After a long day, the moving trucks had just pulled away and we were working quickly to set up beds for the kids.  I was working on Autumn's room while Jeff set up Gavin's crib (yes, he is still in his crib . . . he can't easily get on or off a bed, we fear he may fall out and he hasn't complained yet).  Jeff just finished up and ran outside to move our cars off the street.  Within 30 seconds of him leaving, Gavin shrieked out in pain.  The kind of cry that makes you run.

He had crawled under the crib - something that had never been an option because a drawer usually occupied that space.  And, he got stuck and scraped all along his back - right down his spine - as he was trying to escape.  When I picked him up, a humongous, hard lump had formed right at the spot of his defect.  Huge.  Gruesome.

This is the exact spot where spinal fluid leaked through his healing incision when he was three weeks old - resulting in a rush to Primary Children's and immediate surgery to place a VP shunt in his brain.  This is also the spot where spinal fluid leaked again - even after the shunt was placed.  So, it was a big deal.

Typically Jeff and I both have to take a moment and try to assess the situation as calmly as possible - to try to understand whether we are overreacting or not.  Right from the start, all of the symptoms of a shunt malfunction, for example, are all of the 'normal' things you'd experience with any baby . . . unusual fussiness, sleepiness, spitting up, etc.  It's a fine line between trying to treat Gavin as 'normal' as possible and not freaking out with any little symptom.

But, this time . . . we both knew.  And, we immediately split up to try to search a house that we had officially lived in for 10 minutes for everything we'd need for a trip to the ER.  

Luckily Autumn had been playing with Alida all day - and they walked in the door at the same moment we were about to walk out.  So, Autumn was able to have that sleepover that she had been begging for.

Here's a brief run-down of our night:

9:05pm   Arrive at Sick Kids ER

9:40pm   Register Gavin's name

10:30pm Meet with the nurse to discuss Gavin's case.  She lets us know that she is very concerned and is placing us at top priority in her queue.  She also warns us that several other patients are ranked at top priority in the waiting room and that estimated wait times for the most urgent cases are 3 to 4 hours.  Other lower priority cases were waiting 6 or 7 hours - just to get a room.

Jeff and I discuss whether we should drive to Buffalo.  We discuss whether we should go home.

I reiterate to the nurse that either the spinal fluid will be reabsorbed on its own and everything will be fine.  Or a disturbance in the flow of the spinal fluid could have been created and pressure could be building, potentially causing permanent brain damage . . . which could not wait 3 or 4 hours.

She was sympathetic - but, explained that there were no rooms available.  And, waiting was the only option.

12:45am  We were called back.  A room became available.  The boys got a little bit of rest.

3:20am    Gavin is finally seen by a doctor.  Luckily - because I was irrational at this point - he was extremely nice.  Unfortunately, he also openly admitted that this was a very unusual case and he was 'giving us good advice but making it up as he goes.'  He leaves to consult with the neurosurgery team.

4:30am   He finally returns.  No tests will be run.  He feels fairly confident that no additional damage has been done to Gavin's spine and that the injury has not caused blood to mix with the spinal fluid - which can also cause brain damage.  And, he schedules us for a follow-up visit with neurosurgery in a few weeks.

5:20am   Arrive back home.

7:20am   Wake up to my alarm to go visit with Autumn before school - and make sure she understands what happened the night before - and take her fresh clothes, backpack and snack.

Gavin's back is recovering.  The swelling went down.  He still complains that his back is sore.

It took us all a few days to recover from the lack of sleep.  I still haven't recovered from how insane the wait times are here.

I'll report back after the follow-up appointment.

Look Mommy! No Hands!

Gavin has a new trick. Standing. All by himself. For a few seconds at a time. It's a huge deal. And, he's so proud. And, we are so happy.  This picture says it all.

And, when he wants to get super fancy . . . he lifts his walker up and holds it in the air.  It's so amazing and cute how he feels more secure with that walker nearby.  And, Autumn is his biggest cheerleader.  She can coax him up stairs better than anyone.  I love it when I overhear their conversations and she is encouraging him to try harder.

Speaking of walkers . . . we've ordered this new fancy model that Gavin chose himself.   It's called 'the crocodile' - which just makes it that much 'cooler' to Gavin.  We look at the picture on the computer regularly and are counting down the days until we bring that puppy home for a test drive.

Guess Who Rode a Trike Today?

If that's not worth blogging about . . . I don't know what is. Gavin has come so far since we moved to Canada.

He first got a stander from the physical therapists in September . . . it may seem useless since he is completely bound to a metal frame. But, as both hips are out of socket, it is incredibly important for him to bear weight so that cartilage forms around the ball joints. Since both hips are out, this is not something they will correct. They have discovered after years of attempts, that spina bifida patients do not respond to surgery and hips pop back out of joint because they lack the nerves and muscles to hold them in place. Gavin was thrilled the first time we strapped him in to the stander that allowed him to stand up straight for the first time. And, Jeff and I were amazed that he was so much taller than we thought since we'd never seen him stand. Who knew?

Then, two weeks ago he graduated to a walker. The very first time Jeff propped him up at the walker, he was successful. The therapists could not believe that he was able to hold himself as upright as he does and with no practice. They say it is an indication of great trunk strength. It's a great validation since Jeff spends a lot of time working on strength exercises with our little man. And, the therapists also suggest that Gavin is definitely one of the most active spina bifida patients they have seen. I guess that's a bonus of having an absolutely unstoppable big sister.

On Friday Gavin gained another apparatus from the orthotics unit . . . twister cables. When Gavin stands, he is most comfortable with his toes pointing at each other, a full 90 degrees in from where they should be. The orthopedic surgeons confirmed that the rotation was not from his hips or twisted femurs (which were both possibilities), but from his ankles. The surgery last April helped to correct his clubbed feet, but considering their severity, they still curve sharply in post-operation. The "twister cables" are actually plastic strips that run from a harness around his waist down to his braces (where they screw in). They have joints that allow his knees to bend and they keep his toes pointing straight forward - all the time (which makes it really difficult to crawl, but good for walking).

So, today we attempted his first trike ride. And, we hadn't even finished strapping his shoes to the pedals with velcro before he took off across the kitchen and pedaled all the way to the front door. He was - as he is with every new movement or achievement - absolutely thrilled. We took him outside into the driveway and let him pedal back and forth over and over until we were all too cold. He was super fast pedaling towards the road and made it up the slight incline of the driveway with a lot of focus.

What an amazing kid . . . absolutely unbelievable. We are so proud. Nothing will stop him. And, this is just one more example of why you can never label people or set limits on what you think people are capable of.

The silver lining of our move has been a matter of refreshed expectations. Dr. Tayler, who delivered Gavin, was shocked a year later that he could even sit up on his own. All he had seen was the open cyst on his back and the first few weeks of his life.

Our Heber-based physical therapist, who helped Gavin relax his hips so that he could literally unfold and then helped him bend his knees, saw no possibilities of Gavin ever walking.

And then our Toronto-based physical therapist, who met Gavin when he was 17 months old and had no history or knowledge of the progress he had already made, saw no reason why he couldn't be a candidate for a walker. It was only last week that we showed her pictures of Gavin from birth through his first year. And, she said that had she been the therapist working with Gavin initially, she would never have suggested that he would be where he is today. She was absolutely stunned.

Now . . . all of this said . . . we have no idea of what is in store for our little one . . . or the mental, physical, or emotional battles that are ahead . . . and there will be many. But, our goal is to never put a limit on his potential. We want to push him to the very edge of abilities and not beyond. And, in the end, I think this is what we want for Gavin and Autumn. It's no different really. It's ultimately what every parent wants for their children.

I just feel lucky to be witness to such an amazing life. I am honored to be Gavin's mommy.