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.

8.30

{1st plane ride}

8.25

{wishing you a merry birthday Gram}

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

Show and Tell

I am going to flood you with videos, but we were having fun recording Gabe's play time this evening. (Someday I will figure out how to actually edit these things)


Experimenting from Katie on Vimeo.


Keeping Up from Katie on Vimeo.


Sweet Parrot from Katie on Vimeo.

Music

Today we saw Gabe's Early On therapist for the first time in a LONG time. She is the one who works through the school system, so during the summer months her schedule is a bit lighter. Our plan was for once a month between June and September, but because of unexpected obligations on both of our parts today was the first time she caught up with Gabe.

When she arrived she shared that she was not sure what to expect after not working with him for 3 months. She mentioned it isn't uncommon for kids to lose a bit of ground in the summer months, but yet she had high expectations for how Gabe would be progressing.

We visited, and they played, for about an hour. As she left she said, "He is doing so much more than I expected for him at this point."

That my friends is part of our miracle. That is your prayers. That is an amazing secondary therapist who is working confidently with what Gabe does have.

That is music to my ears.

Determination

Take THAT Spina Bifida from Katie on Vimeo.

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!