Saturday, April 30, 2011

Sneak Peek

                                                          {the great gabe e.s.c.a.p.e}

Thanks to some amazing friends, with giant hearts, we have something big in the works.  We are looking forward to sharing the details and the fun very soon!

Friday, April 29, 2011

Rock and Roll

A few weeks back we had a house full of friends visiting and plates full of homemade cheesecake. (Why the heck is that important you ask?  Just wait!) While we were chatting someone asked if Gabe was ready to crawl.  A seemingly innocent question for a parent of a typical 6 month old, but at the time it was a bit difficult to answer, "No, it could be awhile."

"Before he can crawl Gabe will  likely need to learn to roll from stomach to back, back to stomach and to get in and out of a sitting position. Granted we have been encouraging the rolling for quite some time now and his therapist is hoping he is close." 

I walked out of the room to prepare the drinks to serve.  Then, a commotion.  Gabe smiled as if to say, "Whatever Mom!"  He stretched out his arm to grab our friend Dan's cheesecake off his plate and WhOoP, over he rolled.  Smoothly.  As if it done it a hundred times before. I missed it, but the 9 other witnesses cheered.  Running back in the room I grabbed the camera in time to see him do it again.  Back to the cheesecake.  A yummy scene all around.

I bragged to his therapist about the accomplishment, but after that night Gabe decided it wasn't meant to be repeated.  I figured it was because the rewards weren't sweet enough.  Until today.  Here he goes again. 

Untitled from Katie on Vimeo.
{the rock}

Untitled from Katie on Vimeo.
{the roll}

Thursday, April 28, 2011


We could really get used to this!  This week has been a wonderful change of pace.  This morning we got a call form Gabe's therapist that she would have to cancel his session for today because she was sick.  Sorry she wasn't feeling well, but I was really excited.  The change in schedule made this the first week since Gabe was born that we didn't have a single appointment we had to make.  Anne Hope's teachers are likely glad that I am not pulling her out of class early to get to Grand Rapids.  Gram is probably glad she isn't chasing to meet us somewhere to save Gibson from a waiting room. The gas budget is glad, as you can only imagine. And Gabe is glad to have extra time to play at home.  To explore on the floor.  To get to know his toys a bit better. To let his learning integrate. Next week we are back at it, but for now we are all enjoying a break from the constant intervention!

Tuesday, April 26, 2011



Monday, April 25, 2011


                                                                                    {ready to roll}

Friday, April 22, 2011

Tuesday, April 19, 2011

It's What's Inside That Counts

Today Gabe visited his neurosurgeon at Helen DeVos Children's Hospital.  We were relieved to see and hear that what is going on inside Gabe's head is not as big of a concern as it appears from the outside. 

At this point, although typically explained as hydrocephalus, Gabe has ventriculomegaly (say that 5x fast...ready, go!) Basically, his ventricles are enlarged due to cerebral spinal fluid that is not able to flow freely around his brain (due to an Arnold Chiari II Malformation).  He has not been treated with a shunt, or etv, (yet).  Due to many extra visits to our pediatrician in the last few weeks, the concern about his growing head circumference was heightened.  Although we understand that his head is larger than it should be, have you seen the babe?  His whole body is larger than it should be ;) (not really)! Head measurements alone are not enough to determine whether or not he has developed treatable hydrocephalus.  Thanks to his large (still) soft spot they are able to peek inside using ultrasound.  From the inside it appears that the CSF is not compromising Gabe's brain growth at this time.  Yay!  So, we will wait for two more months and return for more tests. 

{We are pretty happy here about that news}

Thank you to all of our dear friends who have been shouting out extra prayers on Gabe's behalf in the last few weeks.  We are certain they are making a difference - in his health and our peace about it all! 

Saturday, April 16, 2011

Friday, April 15, 2011


100_1487Born just days apart.  They may not recognize it yet, but these two cuties are destined to be besties.  They have another adorable buddy who blazes trails ahead of them by a few months.  I like them.  Our babies.

{Kelly and I joke about how we too were destined to meet eventually.  Our lives before September ‘11 crossed many paths.  Now our redirected flights are on a similar course.}

Collectively, “I like us too.”  These amazing mommas, our collaboration and conversations are a significant source of comfort on this new journey. Where ever it leads us (wink)!

Thursday, April 14, 2011

An Unlikely Suspect?

Babies seriously love Sophie. This adorable French giraffe is “an ideal first toy…which stimulates all of baby’s 5 senses.”  Since he was old enough to grasp anything, Sophie has been Gabe’s favorite toy. Even this week, as Gabe dealt with some crazy digestive issues and gnawed through his first top tooth, he continued to show preference to his best toy. 

Since we have few answers about why Gabe is having issues this week, everything he has interacted with recently is under investigation.  Perhaps Gabe is demonstrating an allergic reaction, so the mama bear in me set to work examining every thing he puts into his body – food, medicine, and toys.  In fact, I spent time looking up product information for a few of his toys to find out if any of them  might be made with latex. (Note: Children with Spina Bifida are treated with “latex precautions ” because the instances of latex allergies are higher in our kids.)

So what about Sophie?  Well…I knew for sure this toy is famous for being made completely out of the sap of the Hevea tree.  What I didn’t know is the common name for Hevea: the Rubber Latex Tree.  Ahhhhh! Oh, Sweet Sophie, you may or may not have contributed to our issues, but either way you will be missed!


{See my big deal bottom teeth? Now this week I’ve added the first top tooth to my grin}

Wednesday, April 13, 2011

Keep Calm and Hop(e) On

I have seen many cute variations of the stay calm printables. For a long time, my favorite was “Stay Calm and Eat a Cupcake.”  Since I’d do better to stay away from cupcakes for a while forever,  I think the following is a good alternative quote.

Hopping – a good exercise, right?
So, is Hoping.
{printable available here}

Mr. Gabe has been having some weird symptoms in the last three days. We’ve been to the Dr. with him and at this point we don’t have any real answers, just a lot more questions.  One unrelated (we think) piece of this week’s puzzle is the size of Gabe’s noggin.  We have been on a three month break from our routine neuro check ups. In the interim, our pediatrician has been actively following Gabe’s head measurements.  Based on this week’s stats, he felt like it was time to for a more thorough investigation of just what is going on in Gabe’s head.  Today we are waiting for appointments to be scheduled and test results to come back.  We are also playing, napping, eating, stretching, cutting teeth, running children back and forth to school, and making cupcakes  (uh! oh!) for daddy’s birthday. 

Trying our best to Keep Calm and Hop Hope on!

Friday, April 8, 2011

Favorite Recent Reads

So This is Life by Tiffany
In so many ways I feel like she just reached in and pulled out my words.

"Even though you don't understand completely what they are going through, you can't help but feel like you're being pulled closer, emotionally towards them. You don't understand what it's like to be in their exact shoes but you can understand the emotional aspect of things that they are going through. You sit there wishing that you could do more for them... Wishing that there was some way to make it all easier for them..."

Boy Sent Home to Die is Now 78 (...or 81) by Matt Cuthbert

"My daddy walked 10 miles (from the train station to his home), carrying me on a pillow after my surgery," said Whatley, who was head of Huntsville Aviation for 30 years."

That Night by Lisa
Our night is sneaking up on us here. I too feel it with each spring breeze.

"With every surge of pain, a mother was learning how to love deeper, live fuller, and appreciate each and every blessing. Like a magnet, the crumbled heart pieces found the space where the love pulsed deep and, slowly, built a new home. This new creation was now beating for new reasons, reasons that not only held the broken pieces together, but formed them into a shape far more beautiful than the original."

3.21 by Kelle Hampton
Learning & Loving.

"Sometimes it takes wearing the shoes or wondering what it would be like to wear the shoes of a tsunami victim, a mother with cancer, a soldier's wife, or the parent of a child with a special need to force us to be more compassionate. A child must understand the concept of "self" before he learns to share; so it is a person must wonder what it would feel like to personally experience something to be truly altruistic."

Tuesday, April 5, 2011