A Few Tricks for the Camera

Upward & Onward

Success

 is not a doorway

it's a staircase.

~Dottie Walters

What's New?

{12.17}

Last night three of our four little loves spent the night at Gram's house while we enjoyed a mostly adults' night with friends. Gabe hung out with us.  Delightfully cooperative - eating, entertaining, and then quietly crashing in his crib.  

This morning I was able to give him some extra one on one attention.  We had out blocks, balls, trucks, and DOGS.  All faves. As we played, Gabe amazed me with the many words he is working in to his growing vocabulary.  I giggle every time he tells me to "go git it."  Anything new is greeted with "lookit dis."  I have no idea why he knows the word "pop" {accompanied by the frantic signing of PLEASE}?!?! He points to the tree and shouts "Christmas."  He reaches for our somewhat creepy Elf on the Shelf  "Santa." As he says "No" he Os his lips and blows out like he is ready to blow a giant bubble. And then again his stand by filler word "DOG!"  

Recently I have had a couple questions about Gabe's MRI {2 months ago already}!  The truth is we really haven't gotten results yet, but peace of mind we have.  The short story, our local neurosurgeon finally responded with "It's fine."  The long story is that we are still waiting for the films to be read in  Boston, we have many questions about Gabe's Chiari Malformation, we are waiting for a face to face appointment, we would like to see the pictures of his spine, we were supposed to hear from Boston last Tuesday, and we resigned to the idea that we likely won't hear anything more until his local appointment in February.  But, the initial "it's fine" lets us know that there is not an immediate need for surgery. 

Gabe had a rough November with ear infections, strep throat, and pneumonia.  Which lead to antibiotics... Which lead to yeast infection.... Which lead to more medicine.  Thankfully, he is back to his silly happy self and will likely get the all clear at a follow up appointment later this week.

We are all looking forward to watching him on Christmas morning as he opens presents, play with the paper, and appears to believe the bows are THE gifts.   We are thankful for the gift Gabe is and the new things the "baby" Jesus is doing in our baby's life!

SBA Christmas Party

{who me?}

Tonight was the annual Christmas Party hosted by the Spina Bifida Association of West MI. They certainly put great effort into making it a very special occasion.  I  was looking forward to the opportunity to reconnect with other families in our local community after a busy year. Our children could not wait to go this year in hopes that Santa would make a return visit to the party.

He did not disappoint!  

Gibson was the first of our kids to be called up to Santa's lap for a surprise.  He quickly opened his gift - a set of 4 monster trucks - and stared at them in amazement whispering "Awesome, Awesome, Awesome..."  Gabe looked over and yelled "TUCK!" and proceeded to tackle Gibson, grab the box, and throw a crying fit as he played tug of war trying to get the trucks for himself.  It was so not funny, but yet SO funny!  

Despite the small scuffle, all four of our kids came home with something special off their Santa lists and giant smiles on their faces.

12.6

{mmmm...I think I like this Sinterklaas deal}

12.4

{calm & bright}

12.2

{HEY!  What's Up?!?!}

11.29

{away in the manger}

Gabe took over the responsibility of setting up the nativity this year.  Gavin is usually the one to spend his time carefully assigning each creature a spot in the scene.  This year he moved up to helping with the Willow Tree nativity set up, leaving Gabe to cheerfully take on the Little People.

11.27

{don't even think about it mister}

I'm pretty sure Kevin and I both teared up just thinking about our baby being old enough to head off with a backpack on.  

Brothers

{thankful for each other}

These two spent Thanksgiving snuggling at home, too sick for the holiday get together.  When Gavin would leave his spot on the couch Gabe would crawl along after him and climb up for a hug. Melt. Melt.  Gavin recognized it was pretty special that Gabe wanted to be with him, so he made sure I took a picture.

11.26

{laundry time}

Look who climbed into my basket.  

11.16

{stuck}

It's official, everyone of our children have weaselled their way in to this trap and pitifully whimpered until we rescued them.  Of course, not before we took the picture!

Everyday Victories

Two weeks ago Gabe had his long anticipated MRI.  It was a lengthy study of his head and spine.  I thought the wait for scheduling was ridiculous? We are still waiting for results.  Trying not to be antsy, but I will admit to leaving another message with each neurosurgeon in hopes that someone will fill us in.  At the same time I like to believe that no news is good news, right? 

He's obviously not worried about it!  He has a contagious smile that he flashes often.  He also has a cheesy, teethy smile that he knows will always get a good laugh.  When he wakes up happy none of us can resist being the first to greet him.  Most often Gibson beats us to it and happily hops in the crib for some brotherly bouncing.

We are still amazed, and so thankful, for the way Gabe is getting up to standing.  We pull out the camera at least once a day to capture it on film, half wondering if this might be the last time we see it. Anytime someone else sees his trick for the first time they eye us suspiciously, "Are you sure he has SB?” My response "Pretty sure no one has told him yet!" 

One of his therapists believes it is time for Gabe to start wearing AFOs to help him strengthen his stance for side stepping and longer periods of standing.  His other therapist does not agree.  To some of his doctors surprise we refused the recommendation for wear when they were made at four months.  Also to their surprise, he has full range of motion in his ankles even without using the AFOs.  To their chagrin this momma is putting up a bit of a stink again. I understand that they might be necessary in time, but we don't think it's time quite yet.

One day, one smile, one miracle at a time.

11.1

{our pride's brave heart}

Despite the spooky looking skies last night, it was a beautiful night for parading our costumed kiddos door to door.  Gabe really enjoyed the excitement and commotion around him. He was a people watching, sucker hoarding, daddy snuggling, trick or treater.

Happy Halloween

{pumpkin little}

Just when I feared this costume may have made its way into the donate pile last fall, I found it buried in a box of treasures.  Now we have a picture of each of our babes wearing the fuzzy, orange jack-o-lantern...at least  for a quick picture.  

10.30

{a treat}

10.20

{baby got bach}

Saturday Morning Stroll

This weekend Gabe's GEMs cheerful stepped out in support of our little guy. We hardly needed to put one foot in front of the other as we blew through the route. Never mind the clouds, chill, and WIND - the weather was no more unpredictable as the daily ups and downs of living with SB.  We've learned to make the best of it and look for the silver linings.  

And make the best of it we did...

In an effort to raise awareness for all those living with Spina Bifida, as well as to raise funds to support our community, the first West MI Stroll N Roll was a great success.  According to our amazing organizers, Leigh & Emily, initial counts show the event raised over $20,000!

Thank you to all of you who continue to walk along side our family and our new"extended family."

Be Aware

October is Spina Bifida Awareness month.  This accurate sentiment was written by another momma and shared on Facebook.  To which I say, "like. like. like."

Spina Bifida Awareness:

 You should be aware that having a child with SB may cause

 increased motivation to help others,

 a newfound perspective in times of trial,

 a desire to enjoy the little things & 

a commitment to change the way the world defines "disability".

 Studies show that raising a child with SB will

 induce strong feelings of  gratitude for even the simplest of milestones &

 produce a willingness to do anything,  talk to anyone,  try any method necessary

 to make life better for your child.

Side effects include feelings of 

worry, fear, uncertainty, and anger 

all tempered with love, faith, determination and hope.

 Having a child with SB is not easy

but loving him is !

It was also interesting to look back at my thoughts on Spina Bifida Awareness from last October.  Our sweet babe was just weeks old and had already taught us so much.

9.21

{one}

The More I Know You, The More I Love You

I know
Gabe currently weighs in at just over 30 pounds.
I love
when my arm is crazy tired from carrying his weight around he helps me forget by hanging on around my collar with his sweet paws.

I know
Gabe is 30 and a couple inches tall
I love
when he pulls his 30something inches up to standing at the front window to pound and greet our neighbors

I know
Gabe says: mom, dada, Gav, Gibson, Hope, up, hi, bye, uh-oh, ta-da, and ball
I love
his deep voice

I know
Gabe has 9 sharp teeth in his little grin
I love
the way he readily shares his toothy smile with everyone, earning him the "oh, what a happy baby" label and no one can resist starting a little conversation with him

I know
Gabe sleeps about 11 hours at night, wakes up for a pre-breakfast, and falls back asleep for another hour
I love
that even during the Idon'twanttobeleftaloneinthiscribtosleep screaming fit he will instantly stop, sniffle, and say "thnuggle" if we walk in to reassure him we are still close by

I know
Gabe loves to play Pat-a-Cake
I love
how he tucks his chin and acts shy every time we say "baker's man."

I know
Gabe has really blond hair after spending time in the summer sun
I love
the one giant swirl that is the back of his whole head

I know
Gabe wants nothing to do with baby food anymore.  He only wants "people food" and he prefers fruit to most other foods
I love
how his pincher finger curls around the teeny tiny pieces he is trying to pick up

I know
Gabe's kidneys are looking strong and healthy
I love
that the details of his spina bifida aren't always the first things that come to mind as I spend my day playing with, caring for, and getting to know my baby ONE year old!

9.18

{ball?}

9.17

9.6

{you thought today was hard, mom?  wait until all 4 of us are off to school}

9.5

{neighborhood watch baby}

9.4

{gabe's newest word: snuggle}

Gabe's GEMs

In honor of the new community of friends we have found in the last year, the children and adults living with SB, all that the West MI Spina Bifida Association is doing for families like ours, and in honor of Gabe's 1st Birthday we invite you to stroll and celebrate life with us!

Join The GEMs as we walk, talk, and have a great time celebrating your support for our family during the last year and all of our Glimpses of Everyday Miracles:)

When: October 15, 2011 at 10:00 AM
Where: Millenium Park 1415 Maynard Ave SW Grand Rapids, MI

As we build our team we will be designing a simple t-shirt for those who will be strolling with us. I will let you know when they are available if you are interested.


The Stroll ‘N Roll is a family friendly event being held to raise awareness about Spina Bifida and to celebrate those living with it. The goal of this event is to create teams that will collect donations for the West Michigan Spina Bifida Association. All proceeds are used for programs and services for people living with Spina Bifida.

For those of you who would normally attend Gabe's birthday party and bring a gift we would like you to consider making a donation to our stroll and roll team instead. You have already been especially generous with our family this year, so we want to be clear that no donation is required or expected for your participation. Whether or not you would like to donate to the team we would LOVE to have your company during our stroll.

Credit card donations will be accepted through WePay.


For more information about the event: http://wmspinabifida.org/strollnroll/Home.html

9.2

{apparently no one mentioned to him that standing was not in his DNA ;)}

9.1

{I'm coming home}

8.31

A few weeks ago I shared with you that we had been given the opportunity to travel to Children's Hospital Boston to see a pediatric neurosurgeon who specializes in research and leading edge procedures for babies  with spina bifida. We were thrilled that each piece of the puzzle came together so perfectly: scheduling, child care, insurance, and travel - all just in the nick of time.

This week we made our trip to visit Childrens.  In addition to being a gifted researcher and skilled surgeon the Dr. we met with was compassionate, thorough, and kind.  He reviewed many pieces of the Gabe's Big Brain puzzle.  He sent us for a test in radiology to use in comparison to data collected at DeVos in April.    After spending time with all the information he ordered an MRI of Gabe's brain and spine to ensure there are no other considerations or hidden problems we may not be seeing.   He agreed the MRI could be done in our home town with images sent to him to study.  We will travel back to Boston if need be after he sees the new films. 

Although the endoscopic treatment of Gabe's ventricles (done by this particular Dr.) would be in his best interest (instead of a shunt) if intervention is necessary, at this point the Dr. believes that Gabe is NOT a candidate because his head is stable and does not need ANY treatment.    

That is the BEST possible news we could have gotten from our second opinion AND

 this sweet guy was pretty excited about it!

 "Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us be the glory... forever.

8.30

{1st plane ride}

8.25

{wishing you a merry birthday Gram}

8.21

                                                                       {11 months}

Might Want to Bring a Tissue to This Party

Getting There from Katie on Vimeo.

After a few weeks of more intensive therapy things really seem to be clicking for our Gabey Babe. This weekend he put some more pieces together to reach a pretty significant milestone.

Then the whole crowd of disciples began praising God for all the miracles they had seen.
Luke 19:37

Show and Tell

I am going to flood you with videos, but we were having fun recording Gabe's play time this evening. (Someday I will figure out how to actually edit these things)


Experimenting from Katie on Vimeo.


Keeping Up from Katie on Vimeo.


Sweet Parrot from Katie on Vimeo.

Music

Today we saw Gabe's Early On therapist for the first time in a LONG time. She is the one who works through the school system, so during the summer months her schedule is a bit lighter. Our plan was for once a month between June and September, but because of unexpected obligations on both of our parts today was the first time she caught up with Gabe.

When she arrived she shared that she was not sure what to expect after not working with him for 3 months. She mentioned it isn't uncommon for kids to lose a bit of ground in the summer months, but yet she had high expectations for how Gabe would be progressing.

We visited, and they played, for about an hour. As she left she said, "He is doing so much more than I expected for him at this point."

That my friends is part of our miracle. That is your prayers. That is an amazing secondary therapist who is working confidently with what Gabe does have.

That is music to my ears.

Determination

Take THAT Spina Bifida from Katie on Vimeo.

Sure of What We Hope For

This week took a *small turn with a whirlwind of appointments and phone conversations, which have all lead up to some big news for our babe.  

Gabe had an unexpected appointment with the pediatrician this week where we discovered  he had been dealing (still with a smile) with a double ear infection. My prompt to get an office visit came mid way through a conversation with his nurse when I discovered yellow gunk oozing from his ears.  The goo turned out to be the leftovers from a ruptured ear drum.  Poor buddy!  He is feeling much better after several day with a few good meds. 

Coincidentally In His perfect timing, this unscheduled visit with our doctor (along with encouragement from a few good friends) jumpstarted our plans to pursue a second opinion on an alternative treatment to dealing with Gabe's ever enlarging ventricles.  After several conversations with our current specialists, our insurance companies, and tentative travel accommodations all of the pieces have quickly fallen into place.

While we would prefer not to be talking about brain surgery at all, we are very thankful to be headed to Boston to consult with the leading pediatric neurosurgeon in the country who is paving a new way for babies with congenital hydrocephalus. We will do our best to keep you in the loop in the weeks to come!

7.28

{well...hello there tooth #8}

7.22

{peek a boo}

7.21

{10 months}

I'm just happy to be here!

Processing

Sometimes in the rush of appointments, therapy, and exercises at home it is easy to miss the progress Gabe is making.  The time is spent thinking and learning about they next step, the next need, and the next milestone.  Last week our family took a break. A week off appointments, therapy, and the extra exercises outside of Gabe's daily care routines. A perfect chance for Gabe to sleep, eat, and play on his internal schedule rather than his calendar schedule.  Interestingly,  during the week of rest he was able to process all that he is learning and snap together some new connections.

It appears this week he figured out a few fun things (or maybe we just slowed down enough to notice):

~Gabe discovered how to purposely move his fingers to wave.  He waves at us when we say "Hi" or "Bye" and when we aren't talking to him he waves to himself.

~He started shaking his head for "No!"   Specifically, he shakes at us when we say, "Gabe, are you ready to sleep." We are working on "Yes" too, but when we do that he just looks at us and smiles.

~Gabe finds a way to get where he wants to go by rolling, pivoting, and scooting...backward.  This week he began pushing up to all 4s and rocking, but hasn't quite figure out how to get his momentum going forward.

~We are borrowing balance bars from CLC for the summer and nothing pleases Gabe more than holding the bars while sitting on his stool and then pulling up to standing. {video to come}

~The week wasn't without a runny nose and a little extra drool - tooth #7 is just below the surface.

Guess we need to head out on vacation more often...

7.16

{phew}

How beautiful is it to do nothing and then rest afterward

~spanish proverb

7.15

{golden}

After a week in the summer sun, Gabe's strawberry blond is looking a lot more like his big blond brothers.

7.4

{happy 4th of July}

Gabe was a little worried about why today's walk required a decorated stroller, but once we got going he happily smiled as he paraded.

7.3

{his first beach visit. thank goodness he loved it}

Finding His Feet

Untitled from Katie on Vimeo.

During the last few months of therapy Gabe has made progress in many small ways.  It would be easiest to measure progress in big movements: rolling over, sitting up, pivoting, crawling, creeping, etc. Yet, we have learned to watch intentionally, and celebrate quietly (sometimes), the itty bitty milestones. 

One type of therapy Gabe is receiving is called the Anat Baniel method. The theory is that the parts of our body can be mapped to our brain through light, slow touch and movement.  In fact, they believe we all learn to move through random movements that are successful.   All movement is initiated by the spine, so they teach that rolling, sitting, crawling, standing, and climbing climb can all be learned from our most natural position - lying on our backs.  We believe with them that Gabe's brain has the ability to change and form new connections in place of some that may currently be missing.  His therapist works intentionally with the movements and abilities he is displaying, instead of prematurely pushing him into positions that accentuate his diability.

A major goal in our last 3 months at BRAINS has been to help Gabe recognize his feet and to be able to rock his pelvis and bend his spine enough to get his feet up to his mouth.  This is the "map" he needs to be able to sit correctly and to eventually get in and out of sitting on his own.  As you can see he is finally initiating this movement on his own and we could not be more pleased that Gabe is finding his feet.

If you are interested in reading more, Kelly, who is trained as a "traditional" therapist wrote about her experience with BRAINS and is now in the process of training to be an Anat Baniel therapist.

You might also enjoy checking out some great clips highlighting the changes in another cutie and the way he is moving.

6.10

{he may have missed Gavin's 1st day of 1st grade, but was more than happy to be there on his last}