Graham wrote the Christmas letter this year, his words are all in CAPS, we filled in the rest to help you decipher the hidden meaning.  Even with our experience there are some random words that we were unable to connect.  As you read this we ask that you imagine a very enthusiastic blonde hair blue eyed two year old attempting to communicate with you.

2013 has gone so FAST!

Graham went from a crawling BABY with NO words to a little boy running around our house, wanting to jump on the COUCH, and talking pretty much non-STOP.

GRACIE has also gained a lot of skill in the WALKing department.  She absolutely smashed every distance goal that was set for her by her therapists and SCHOOL.

We lost Hoover in May.  We miss him terribly.  It’s sad to report that when we put out a picture of Hoover and SANTA a few weeks ago, Graham only recognized Hoover as PUPPY.

Graham is starting to SING.  His repertoire includes such classics as BUS! (Wheels on the bus) C’s (the ABC song) LA LA (ELMO’s song), and AMEN (Johnny Appleseed).

GRACIE is in first grade.  We continue to be grateful for the opportunities this provides, but have found first grade a lot more difficult to figure out a place for Grace with her peers than kindergarten ever was.  We recognize that this is just the beginning.  There are a few kids who are really phenomenal with her and we are incredibly grateful for their willingness to embrace Grace.


We were excited to go on a family vacation this year.  We spent THREE days in Kansas City (with some help from JILL).  We saw FISH at the aquarium, did some SHOE SHOPPING, did some EAT-EAT-EATing, and went to the ZOO where we saw BIRDS, BEARS and rode a CHOO CHOO.

Many of our summer Sunday afternoons were spent at the Union Park Carousel (the DING-DING).


GRACIE continues to DANCE with DANCE Without Limits.  She loves DANCE.  We know because she smiles more there.  She also lets JILL, JACQUE, and CHLOE move her into positions she would normally fight – additional proof of her love for DANCE.

PPTTTTHHHH (elephant noise)

She also plays BASEBALL in the Miracle League and rides HORSEs at Wesley Woods.  More than once we have commented to ourselves how lucky we are to live where we do so that GRACIE can have so many opportunities.

This year GRACIE also got a SWINGset from Make-a-Wish.  It’s so fun to have to just take a few steps OUTSIDE (backyard) and have a special swing just for GRACIE and a porch swing that we can SWING on with her.  There is even a TOWER with STAIRS for GRACIE to WALK UP.  We were asked to do a TV commercial for Jolly Holiday LIGHTS, which is the major fundraiser for Iowa’s Make-a-Wish organization.  GRACIE has received many compliments on her new found STARdom.

In July GRACIE had a surgery where she received a Vagus Nerve Stimulator.  It sends an electrical pulse to the brain by way of the vagus nerve and can disrupt and sometimes even STOP a seizure.  It will take eighteen months for it to become fully effective but the good news is that Grace’s seizures have been reduced.

Graham had to have surgery too.  He had a plugged tear duct that the EYE DOCTOR had to take care of.   He had to have EYE drops in that EYE for 10 days after surgery.  When we would tell him it was time for the drops he would make us laugh by declaring ALL BETTER and trying to get away long before the cap was off the bottle.


Just before Thanksgiving we attended the dedication of the new Epilepsy Unit at GRACIE’S DOCTOR DOESCHER (Children’s Hospital of Minnesota).  With more space, state of the art facilities and private patient rooms it will be a welcome change for any future hospitalizations for us and all the other people we know who seek what happens in that space.  While we were there we were able to see the commissioned artwork of DANCING that was donated in Grace’s honor. Earlier this summer we were able to see a bench also given in honor of GRACIE in the new rooftop garden.  We were amazed at the outpouring of support that allowed the pictures and bench to have GRACIE’s name associated with them.  THANK YOU!

Graham is an early riser, sometimes as early as 4:30 in the morning yelling into the baby monitor MOMMY WAKE, depending on our response time this can transition into DADDY, GRANDPA, HEATHER (who lives in Michigan), SANTA, and NATHAN (cousin in Hudson).  He enjoys BOOKS, BUSes, COLORS, making ANIMAL noises, and EATing carbohydrates such as COOKIES, CRACKERS, CAKE, MUFFINS, PANCAKEs, and CHIPs.  Graham has got quite the vocabulary as you can see and is very curious, just like Curious GEORGE the MONKEY.  Graham is good with GRACIE and it has been interesting to see how he responds to her.  Recently he picked up a magnet that we use to activate Grace’s VNS and held it to his own chest the way he sees us activate hers.  It is just amazing all that he picks up without us even saying a word.

Joy (MOMMY) continues to WORK at the Iowa Department of Public Health.  Kevin (DADDY) continues to WORK for Unity Point Health.    Both have had some time-intensive components this year – luckily not usually at the same time.

All in all not a bad year.

THANK YOU for checking in on us!

We hope you have a Merry Christmas and wonderful 2014.


Kevin, Joy, Grace, and Graham