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!

Eye, Eye, Ice Cream

This morning Gabe had his first appointment with a pediatric opthamologist.  After his recent evaluation with Early On there was some concern that perhaps he had a vision problem.  This momma is pretty sure it was more about wanting the big, noisy, colorful toy than the small pieces of rice. Anyway...they wanted to rule out a vision difficulty before moving forward with occupational therapy.

I am all about ruling out obstacles for Gabe so today we saw the specialist.  What is amazing is that in a short amount of time they are able to get very specific information about his optic nerves, eye muscle strength, and vision.  Since he is still dealing with cerebral spinal fluid in his ventricles there is a chance the extra pressure could damage the nerves and muscles.  However, at this point we were thrilled to hear that Gabe's eyes checked out perfectly.  This is one specialist we will not need to see again for a year.  Yay!

In celebration, we thought we should share a sneak peek at just one of the many Great Gabe Escape packages available to win in our upcoming fundraising giveaway!  Over the next few weeks we will look forward to previewing the rest of them for you as well.

Appointment Week

It was not easy to keep up this week.  Our house and my hobbies fell behind, but we did focus on health, therapy, and friends!  Really, that is all that matters anyway. 

Gabe recently had his first urodynamics study and kidney ultrasound, which will serve as baseline norms for him.  At this point both of those tests are showing appropriate results for an infant with Spina Bifida.
We were also glad to finally meet with the pediatric orthotist.  She was encouraging with her reactions and conversations regarding the strength and movement in Gabe's legs and feet.  Interestingly, she is the first to give a "defect level label" to Gabe's lesion based on his sensation.  The orthotist also spent a bit of time talking with us about therapy and things we will watch for in the future.  Although I have still been struggling with Gabe's AFOs she agreed with the prescription and encouraged us to use them during his nap times.  Basically, he will only wear them when he is not actively moving his ankles.  This will be less time than was originally recommended and I'm a little more okay with it.  A little. 

Our in home PT visited this week and felt like we were making good progress with the tightness in Gabe's upper body. 

Near the end of the week we had a visit from our Early On nurse who updated Gabe's IDA and found him to be meeting the expectations for his adjusted age.  More encouraging news.  We spent a bit of time talking about what services will look like for Gabe in the months and years to come.

Overall, the week brought many good answers and plenty more questions.

Perhaps Neurosurgeons Are People Too?

After waiting much longer than we expected, Kevin and I were finally able to meet with the pediatric neurosurgeon last week. We came prepared with many questions, yet a bit intimidated to ask someone so smart and skilled.

We had heard plenty of warnings about what to expect when talking to this scientific specialist: worst case scenarios, confusing vocabulary, goofy doctor-isms, and inflated self esteem. We were so pleasantly surprised by how the visit actually progressed.

Our doctor was incredibly honest with us about what to expect. However, he explained so many things to us in language that we were finally able to understand and statistics that we were able to hold on to. He has professional opinions on whether or not to proceed with a shunt surgery right away, as well as whether to use programable or non-programmable shunts {a confusing sentence if you're not a SB insider...sorry}. Yet, he is willing to listen to our concerns about each of these issues and involve us in the decision making process. 

There is peace in knowing what to expect from this specialist in the weeks {and years} to come. At this point it is high on our prayer list that this neurosurgeon will be assigned to us after our baby's birth. At this point it is the plan, however his {the Drs.} family is dealing with a personal medical uncertainty of their own which may change his schedule. For those of you who have willingly joined us in prayer for the days and weeks to come, we ask that you will add this concern to your list. Thanks!