Tuesday, May 30, 2017

Memorial Day Weekend

On Saturday, we took Kaitlyn to see the new Pirates of the Caribbean movie.  She loved it!

Sunday was Superhero day at Hadlock.  Kaitlyn met Ironman and Spider-Man.  Kenzie still wants nothing to do with anyone in costume!   On Sundays kids 16 and under get to run the bases after the game.

On Monday, Kaitlyn's Girl Scout troop marched in the town's parade while Kenzie and I watched.  Daddy had to work.

Afterwards, we brought Daddy lunch at work and brought all the dispatchers dessert.

Saturday, May 20, 2017

Kenzie update and results

This past week has been a struggle as on Tuesday I came home with Kenzie while Cyndi was still at work and Kaitlyn at school.  As soon as we got inside Kenzie went unresponsive and shortly thereafter started seizing.  Needless to say a short ambulance ride later we were at Maine Medical Center.  After spending a few hours there and several lab tests we were discharged. It is believed the seizure was brought on by a high fever Kenzie developed.  With Kenzie's condition apparently colds, lack of sleep, and some other things can make her more susceptible to having a seizure. For now her seizure meds have been increased and her fever or cold seems to have finally fully left her yesterday.

In other news Kenzie's blood work from her full genome genetic workup came back Friday.  It showed no clear findings.  There were 2 maybes found though that would require further testing.  One is a nuclear DNA cell.  It seems unlikely but is showing 2 pairs hence maybe a cause.  For this one Kaitlyn would need to be tested to see if she has the same pairs.  If she has them then thst finding would be insignificant because Kaitlyn is healthy.  The other maybe is a mitochrondial cell which shows only 2 percent affected.  For this to be checked further most likely a muscle biopsy would need to be done.   All of this information thus far has been delivered only by the local geneticist office.  We are waiting for Dr Rodan in Boston to get and analyze the results. Once he contacts us we will have a clearer view of what the next course of action is.  We would much rather have any further testing done in Boston.

So really still no clear answers at this point.  We will send another update next week after Dr Rodan calls.  Thank you all for your continued prayers.

Sunday, May 14, 2017

Mother's Day 5K

This morning despite the yucky rain and cold, Kaitlyn and I participated in the Sea Dogs Mother's Day races.  Kaitlyn did the Kids Fun Run and I did the 5K.  The crappy weather must have motivated me, I shaved over 3 minutes off last years time although I was less prepared!

Saturday, May 13, 2017


Kaitlyn has had a busy past few weeks.  It started out with the Girl Scout Father Daughter Dance.  The theme was the beach.  Luckily, we had an unseasonably warm day. 

For the past two years, Kaitlyn has been attending monthly sacramental prep classes ahead of her First Communion and Confirmation.  This month's was her last formal retreat.  Some of the parishioners make "Blessing Cups" for the kids as gifts. Each one is unique.  Kaitlyn was so excited to be presented with hers. 

On Tuesday, Kaitlyn's class led the prayer service and May crowning for Mary. Kaitlyn did so well reading in front of everyone!

On Wednesday, Kaitlyn had her first cross country meet.  I'm not sure if they measured the course wrong or if Kaitlyn got significantly faster!

And today was her dance recital!