9.6

{first day of first grade}

Where in the world has the time gone?

Super Gabe

Every family is made of SUPER people! 

As we work together to strengthen our capes we begin to recognize and encourage the super powers in each of the people we love.  While spending last week in Florida at Family Forward, our family had the opportunity to work on our figurative capes.  During our favorite session with Duct Tape and Cricut we were asked to brainstorm a project we could build together using the supplies at hand.  Gabe, who we would have guessed was oblivious to the message of strengthening our family based on his attention span, asked Kevin to make him a super hero cape.  It was fun to be able to do that for him and as soon as we tied it on he took off!  A thrilling display of running, jumping,and  giggling!  Those of you who know Gabe's story understand the Super {Natural} Powers at work here.  Physical limitations and abilities aside,  our family delights in Gabe's super powers of making people smile, entertaining, being playful, and empathizing with others.

2day

{birthday boy}

This morning my babe woke up happy, shouted "Morning Mama," climbed out of his bed, walked out of his room to snuggle, asked for pancakes and sausage, and sat in a chair across from me eating his breakfast with a giant smile. "Gabika's berfday Mama?" It is his birthday. It is also so much more than we dared to hope for! I am thankful for the miracles: big, small, and 2!

Wait for it...

Just days from now Gabe will be 2!  We can hardly believe it.

I remember meeting with his neurosurgeon before he was born.  At the time he explained to us our baby would likely need a shunt to help manage his hydrocephalus.  When Gabe was born they decided to hold off on the shunt when doing his initial back closure.  There were many tense days in the hospital where they monitored his head circumference.  Measurements were taken at each feeding to see if there was a significant risk and reason to proceed with the shunt surgery.  After a month in the hospital we were sent home with a tape measure and our adorable little “mega mind” for more monitoring. 

When he saw him for the first time, our thorough pediatrician wrote a pop up note on our electronic file that he would personally like to measure his head each time Gabe was in the office for any reason.  A shunt seemed inevitable. 

We returned to HDV often for ultrasound, CT, and MRI scans of Gabe’s brain to carefully measure the percentage of fluid versus brain growth.  We held our breath.  We prayed for miracles.  With each visit to neuro our Dr. would weigh the pros and cons.  He seemed to wrestle with himself, and the options, just below his breath, in the octave where we could sense the hesitation in his thought process even if we didn’t hear it in his statements.

 “let’s wait just 3 more weeks to decide”

“repeat”

“hmmm…3 more weeks”

“well, I guess I want to revisit this in another month”

 “let’s check him again in 2 months”

“the next appointment will be critical.  If there is ventricle growth in his CT scan we will proceed with a shunt.” {note: This is when we took him to Boston for a 2^nd opinion and a discussion about proceeding with ETV/CPC instead}

 “if he makes it safely to 1 year he will likely be okay without a shunt” 

"see you in 3 months"

“well, if he doesn’t need intervention by the time he is 2 the chance he will ever need a shunt is about 0%!”

"schedule a 6 month check up"

We recognize the amazing medical advances in shunts allowing doctors to save the lives of children with Spina Bifida.  Along the way we somewhat accepted the idea that Gabe might eventually need intervention. But, this week we are relieved, thankful, and thrilled to finally say...

We have a SHUNT FREE 2 year old!  

Gabe's 1st Bicycle

This week brought a very special delivery!  The generous people who come together at the Kenowa Ambucs purchased, put together, and presented Gabe with his first bicycle.  It is an Amtryke hand and foot pedal tricycle fitted specifically to his size and current need. They also brought him a helmet to wear when he is keeping up with his siblings on their bikes :)  

He was not sure what he thought at first, but warmed up to sitting on it quickly.  When he is buckled to his seat and strapped into his pedals he will be able to practice moving forward with his foot motion, arm motion, or both.  Kevin and I will also be able to help steer using the push bar.

This is an amazing gift.  We feel very blessed and appreciate the friends at Ambucs who made this a possibility for Gabe, and work all year to provide similar bikes to many other families as well.  

Hopefully by the September 22nd Stroll N' Roll  Gabe will be ready to roll with his buddies instead of stroll{er}ing with mama!

{side note: the summer is hot and the plants are dry, but the color focus on these photos is deceiving.  Kevin has actually been working diligently to keep our grass lovely shade of green and the bike has bright primary colors.  we will have to get an action shot soon with full color}

SpiderBabe

Since Gibson was napping Gabe finally had a chance to try out his superpowers with the Spidey costume.  He thinks Spiderman should roar!  He tried and tried to get a reaction from Gavin and Anne Hope, but they would not let anything distract them from their precious screen time.  But, he had me all tangled up in his adorable web.

"I Made It"

So...

this happened yesterday

and again today

and I am certain it deserves words


the story.

but, even before I put all that together

this miracle needs to be shared

 


And now we step to the rhythm of miracles.
― Aberjhani

Learning to Stand

This happens to be Gabe's favorite indoor activity.  Although with the wonderful sunny weather he spends most of his indoor time whining at the door to go out and chase "da ball, da ball, da ball."

Anyway, his chatter in this video makes me smile (so does the standing work he is doing!).

This video was actually taken a couple weeks ago now, but I couldn't resist sharing it.  Notice the couch cushion.  He usually  pulls one down when he wants to practice standing.  I think it is fascinating that the activity is self initiated and shows that he is a bit cautious not wanting to smack all the way to the floor while he is experimenting. Although, he is able to do it without the cushion also.
 
"Balance is not being rigid, but being able to catch ourselves, support and steady ourselves and move on....one of the things we explore is how to use support from the environment (usually the floor, sometimes a chair or the wall) to facilitate effective movement." Clyff Smith

Oh, you want to see more?
Sure!


Speaking of experimenting, while I have yet to catch it on video Gabe has been taking 2-3 steps completely independently when transitioning between pieces of furniture around our house.  Talk about exciting days in our home!

Something to Talk About

I was gently reminded yesterday that it has been almost a month since I've updated here and quite a bit changes for a toddler in a month.  It's true.  We certainly have plenty to talk about, yet we're feeling a bit speechless.

Gabe has picked up several new words in his growing vocabulary.  Although we may be the only ones that recognize a majority of his phrases he is beginning to use more phrases and is having fun exploring animal sounds.  As anyone who has spent time with him in January will tell you, "Woof!" is his best friend and his best word.

{sweet talking}

In the last few weeks we have been experimenting quite a bit with Gabe's diet in hopes of finding the right combinations for his digestive issues.  Just when we think we are on to the right balance of natural supplements we are tipped off to new research that suggests that maybe the right balance isn't right after all.  Thankfully Gabe has no complaints about eating. anything. ever.  and he cooperatively gobbles whatever is offered.

Last week we visited our ABM therapist a few times.  It is incredibly exciting to see the progress he is able to make in such a short amount of time when he is working with her specifically starting with the movements that he is already confident with.  I have embraced the idea of only working on movements he is already using independently.  I have defended the controversial, and somewhat experimental, stance on not using AFOs with our therapist and orthotists. We have had several conversations with our in home therapist where we do not see eye to eye on what Gabe should be practicing. I had quite a light bulb moment last week about Gabe's amazing progress and capability. When explaining my frustration to Rene about Gabe's IEP goal of standing for 25 minutes she asked me what our therapist would do about that goal if Gabe was walking by the next time she saw him.  It was just the reminder I needed {again} that despite Gabe's diagnosis I need to dream beyond the limits.

Oh... about that MRI!  Our last neuro appointment was in August and the MRI was in October.  There seems to be inadequate conversation between our doctor here and the doctor in Boston, and neither of them is willing to speak out independently other than to say "It looks ok."
Okay, no syrnx? Okay, how is the Chiari?  Okay, are the vents growing?  Okay, what is the next step?  We obviously still have a lot of questions.  Last week I decided to call for my own copies of the MRI films and radiology reports and Dr. and Dr. Gabe's Mommy & Daddy took our own peek at "OK."  From our untrained eyes we felt there were some good surprises and some expected bummers.  But, overall it will be okay:) We did call for a follow up with our neuro in GR and they were able to get us in for February to discuss our questions after seeing the films.

This week Gabe started a Parent and Child group session at the Conductive Learning Center.  It is a group program with one of his best buds.  We entered the two week session with the hopes of learning how to implement their proven techniques for bladder and bowel training for children with spinal injuries.  Although I  am glad to be learning the strategy, we are already seeing other benefits of participating in the class.  In the first three days I have really appreciated the chance to see Gabe: interact with another child his age, see empathize with each other as one or the other of them cries, mimic his peer, become increasingly more comfortable with his instructor, follow directions, stick up for the things he doesn't want to do, participate in small group fine motor activities, paint, play, experiment, serve his own snack, drink out of a big boy cup, copy movements with his mouth and belly, chase his "woof", shoot hoops, and be downright determined!  I have to admit I have never had as many reservations about trying something with Gabe as I did about this session, but I already feel  the effort to be there with him daily is worth it!  Speaking of needing constant reminders, this class is reminding me{again} on the many pieces of Gabe beyond the gross motor skills we spend so much time focusing on.

However, tonight we bought him a sturdy walk behind toy.

{sweet walking}

No words. Just tears, smiles, and thanks to Him who is able to do more than we ask for or dream of - infinitely.  To Him be the glory in Gabe's life forever.

1.4

{baby's 1st official haircut - we will not be counting the NICU shave}

{c'mon mom, bangs in the eyes are in...see!}

{too busy building to pose for the after shot}

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!

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!

9.2

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

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

Determination

Take THAT Spina Bifida from Katie on Vimeo.

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...

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.