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!  

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.

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!

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! 

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!

A Happier Holiday

Sometimes it isn't until the big sigh of relief that I realize I have been holding my breath.

We live in this place of expecting the best, but preparing for the worst.  This time the "worst" was an impending brain surgery.  At our last neuro appointment we were given the impression that we had met up with decision time on whether or not Gabe needed a shunt.  Based on his steady ventricle growth we were "teetering on the fence."  Since Thanksgiving it has been on our minds that it might have to happen between our appointment on the 16th and the Dr.'s holiday vacation schedule.

Kevin traveled to the appointments with me yesterday where we got the sweet, sweet news that Gabe was safe to grow - shunt free - for another month! 

Another answer to our prayers. 

Breathing more easily for sure. 

In fact I think I might finally consider some gift wrapping and baking, just in time for a celebration.