On the road again…

Before talking about our new journey, I think it is important to mention the road has had some twists and turns since the last update.  We have had some challenges, lost some important people along the way, most notably my mom.  We have also made some great new memories, friendships and had some wonderful things happen.

We have watched our children grow into amazing little people.  Their personalities have morphed in a way that usually has us laughing, or wondering how they have become so smart, creative and insightful.  At other times we wonder how we are going to get through everyday challenges of being a parent such as a stubborn stage, tears before school, refusal to wear insert clothing item here, etc… without our heads exploding!  It is hard to fathom that Vivian is about to complete Kindergarten and Jonah will be starting in the fall.

When we started this blog almost 5 years ago we never imagined we would be faced with a detour like the one we are faced with today.

Our children have been relatively healthy; rarely do they get sick other than a runny nose now and again.  We were slightly alarmed when at Vivian’s 6 year appointment on Valentine’s Day Dr. Christine Bennett, known fondly in our home, simply as Dr. B noticed a curve in her spine.  She wanted it to be looked at more closely.

The following week we met with Dr. Michele LaBotz and an Xray was scheduled.  The results came in the next week; it appeared Viv had Juvenile Idiopathic Scoliosis.  Rare for age 6, the curvature measured approximately 35 degrees thoracic and 20 degrees lumbar.  Dr. LaBotz referred us to Dr. Philip Anson, as the degree of Vivian’s scoliosis was more severe than she typically treats.  We also contacted Boston Children’s hospital and set up an appointment there with Dr. Lawrence Karlin.

This certainly became more alarming, however, as we have with most challenges we are faced with we started researching…  We found some great information on the Scoliosis Research Society website.  http://www.srs.org  We were prepped and ready to meet with Drs. Anson and Karlin.  Based on the visits with both a plan was set in place for Vivian to begin wearing a brace to help limit the progression of the scoliosis.  Dr. Karlin strongly recommended a MRI be done to insure there was no other cause for the curve.  Dr. Anson agreed and we moved forward. 

Vivian was measured for a brace and was able to choose a design for it.  She was quite pleased to find the wide variety of choices and immediately chose pink with hearts of various colors.  She began wearing the brace May 13^th.  The transition to the brace went much better than we had anticipated.  If you are reading this you probably know Viv is a rule follower (with everyone except Mike and me!) At her brace fitting her Orthotist, J.P. Donovan said 21 hours of brace time per day and more if tolerated she was all ears!  The brace has not slowed Vivian down; she is able to do most things including her favorite, monkey bars with no issue.  She has adapted quickly to the few challenges she has encountered.  

On Thursday, May 23^rd we were off to Maine Med for an MRI which was done under anesthesia.  She was pretty loopy after the MRI but all in all it was a non-event.  She was back to school the next day and we celebrated Memorial Day with a fun three day weekend.  

Tuesday, May 28^th Dr. Anson called to let us know that the MRI was not normal.  Vivian was diagnosed with Chiari Malformation.  Dr. Anson had already contacted pediatric neurologist Dr. James Wilson on her behalf.  The following day Wednesday, May 29^th we met with Dr. Wilson.  He explained what was going on and recommended surgery, although the surgery is not emergent it is necessary.  We decided not to hesitate.

Vivian will be admitted to Maine Medical Center tomorrow morning to undergo a Craniotomy, posterior fossa decompression.  Some websites we have looked at that explain the surgery and the condition include http://www.mayfieldchiaricenter.com/ and http://www.wichiaricenter.org/

We are very thankful that Viv has not suffered any of the neurological symptoms that can accompany Chiari Malformation.  We feel fortunate to have had the care of each of the doctors she has seen.  We are remaining positive and trying desperately for her and Jonah not to be aware of our fears. 
  

Just to be safe Jonah will need to be checked as well.  Vivian, as any sibling would, has been torturing him with the information that when he wakes up from anesthesia he will have a needle in his arm.  As soon as he has moved on to something else she mentions the MRI again…  His response is typically “I don’t have a crooked spine.  I’m NOT having a MRI!”

We are lucky to have an amazing support system of family and friends to help us along the way.  

Please keep her in your thoughts. We are aiming for a daily update as time allows.

Gilda