A Strolling, Rolling Success

rolling...rolling...rolling...

The 2nd Annual Stroll N' Roll was a wonderful celebration of friendship, support, everyday miracles,  and real life superheros!  The GEMS won the team spirit award with our gem-ified crowns and our streamer-fied wagon {Gavin declared the jeweled ring pops to be especially "spiritual"}. The event raised over $18,600 for the West Michigan Spina Bifida Organization. We are so thankful for the opportunity to be part of this community and to call the other families of the WMSBO our friends.

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!  

A Beautiful Community

Since the time of Gabe's diagnosis we have been blessed to participate in an amazing community of families from West Michigan who are also living with Spina Bifida.  At first the group served as reference desk for my many questions about "What to Expect When Everything is the Unexpected."  Very quickly these caring and giving women became some of my closest friends.  There is something very comforting about being in the company of people who "get it."

In the past 2 years {that 2 thing...not quite ready to talk much about it ;)} I have also appreciated getting to know many amazing women from my own neighborhood, preschool, church groups, etc. who are parenting children with special needs.  In our conversations these moms are impressed by, and somewhat envious of, the community of support we have established in West MI, for families dealing with SB.  Two of my "mentor moms" {I use the term loosely since they are younger than I am} have often suggested trying to create opportunities to connect moms - who may otherwise feel like they are alone in their parenting journey - for conversation, advise, support, giggles, and encouragement.

I am so excited to have recently been given an opportunity and an outlet for bringing Holland moms together!  Working with Jenny, the heart behind Moms in Tow, we will be reaching out to bring moms together.  Our goal will be to plan at least two opportunities a month for families raising children with special needs to get to know one another.  It is our hope, within this large group  support system, small groups of families with similar diagnosis will be able to build special relationships.

Our first get together will be a play date at Christ Memorial Church's indoor playground on Monday, September 17th from 10:30-11:30 AM.  It will be a very casual chance for us to visit while the kids play.  We are looking forward to hearing from families who come about what types of events/support they would like to see in our community.  If you are interested, please know that you do not need to be a Moms in Tow member to participate.  However, the events will always be posted on their main page activity calendar!  You will also find information about these, and many other wonderful events on the  Moms in Tow facebook page.

To see the invitation and/or RVSP ( rsvp is not necessary) click HERE!

The 2nd Annual Stroll N' Roll

Calling Gabe’s GEMs!  

It’s that time of year again - the 2nd Annual Stroll N’Roll.  This year’s stroll will be held at Millenium Park in Grand Rapids on September 22^nd.  A perfect way for us to celebrate Gabe’s 2^nd birthday with our friends and family - that means YOU are invited!  

The Stroll N Roll benefit raises funds for The West Michigan Spina Bifida Organization. Our participation, and contributions, will enable the WMSBO to continue the important work of supporting children and families affected by Spina Bifida.

Spina Bifida is the most commonly occurring permanently disabling defect. The diagnosis itself is emotionally challenging, as is the resulting financial strain placed on the families who are affected. 

The WMSBO exists to alleviate emotional and financial burdens for the families it serves. The organization provides assistance for adaptive sports, special camps, and educational conferences. In addition, the WMSBO provides programs and events where the local Spina Bifida community connects with those who share and understand the unique challenges associated with this complex birth defect. The need for support in West Michigan is greater than ever!  

If you would like details about joining the GEMs to stroll, roll, or scoot send us an email (listladykatie{at}gmail{dot}com) and we will let you know how you can participate. 

If you would like to donate to the WMSBO Stroll N Roll in Gabe’s honor we have set up a donation page for our team, or you may donate by cash or check (payable to WMSBO).  Online donations must be submitted by September 14, 2012.

Thank you for your consideration!

Mimicle

Gabe’s favorite word is “mimicle.”  He’s always looking for them, always pointing them out, finding them in the most unusual places, making people smile as he identifies them, and encouraging conversations about how a 1 year old knows what a “mimicle” is.  We love it! Driving M22 during our recent family vacation, Gabe was so excited to announce, “Look, a mimicle!” as we passed the most amazing scenic turnout featuring nothing but Lake Michigan shoreline and water as far as you can see (and many tourists who also stopped to appreciate it). The natural beauty is a “miracle” for sure, but now we know for certain he is actually saying “motorcycle.”

8.20

{love}