Friday, November 14, 2014

Make-A-Wish trip, K's for Keegan, & other tidbits

Hello again!

I want to start out by giving a heartfelt "thank you" to everyone who supported our decision to sign off of the blog on a regular basis.  It's been nice to have some time to ourselves without worrying about maintaining these updates.  As promised, we will be sure to post when there is news that needs sharing, and thus, I have a few tidbits and housekeeping issues to address.

Best news first: Keegan successfully made it through his Make-A-Wish trip to Disney World in September!  It was a fantastic trip for all of us.  Keegan struggled a lot with the break in his routine.  Most of each day was not happy ones for him, but there was a moment each day that made it all worthwhile.  On our first day at the Magic Kingdom, he and Audrey had a private audience with Elsa and Anna.  He was scripting from the movie, and the princesses played right along with him.  Our chatterbox, Audrey, was utterly speechless and in awe.

On Tuesday of our weeklong trip, we visited Hollywood Studios, and Keegan was able to meet Lightning McQueen.  It was one of the few times he was quiet and not internally scripting for comfort.  He just ran his hands over the car slowly, taking it all in.  I adore this picture!

Wednesday was the one day he was happiest - at the beach.  We managed to wait out the rain, and his only meltdown of the day was when we had to leave.  Can't blame him there.

Thursday, we visited Epcot and met a LOT of princesses.  Keegan did much better with the "face characters" (like princesses, Mary Poppins, Peter Pan, etc) than with the costumed characters (Mickey, Donald, etc), so this day was a little less stressful for him, even though we had a lot of ground to cover.  It was also the soft opening of the Food & Wine Festival, which made the day easier for the adults.  Ha!

Friday was Keegan's seventh heart transplant anniversary, and what a day it was!  We started out with a character breakfast at Ohana.  This breakfast featured Lilo & Stitch, two of his favorite characters.  We think he identifies most strongly with characters that don't speak clearly, like Stitch and Chip & Dale, since Keegan doesn't either.  As the rest of the week had gone, he was overwhelmed by Mickey, Lilo, & Stitch in their costumes.  When he is scripting internally for comfort, it is rarely understandable.  Near the end of the meal, Pluto came by our table.  Keegan was scripting something we couldn't identify, but all of a sudden, he said "now sit!", pointing to Pluto.  Gray realized he was scripting from a classic Chip & Dale episode with Donald and Pluto.  The person playing Pluto must have heard it.  And sat!!  Keegan looked intensely at him and said, "lay down!"  Pluto did.  Keegan started jumping up and down with excitement.  "Roll over!"  "Now, sic'em!"  God bless the actor playing Pluto because he went through this charade two more times to Keegan's delight.  That moment alone was worth the whole trip!

Later in the day, the photographers at Disney World in the Magic Kingdom made one of our biggest wishes come true.  A private photo session with Keegan and a set of ears we had made in honor of Johnston, Keegan's donor.  I think the pictures are worth more than words here.  Without Johnston, this trip, this life, would not be a reality.  He is with us every moment of every day.

Since the trip, Keegan has managed to make it to one whole year outpatient!  That's only happened one other time in the last 7 years.  As nice as it is, sometimes it gives you a false sense of stability.  Things are pretty much going well though.  We are waiting on an appointment with the new neurology group with baited breath.  Keegan has begun showing some regression of his short-term memory, and we are anxious to meet with the neurologist to discuss how we can help slow the dementia process or at least make it easier for him.  We have also been having difficulty controlling Keegan's blood pressure.  He is back on his old doses of hypertension medications, but his numbers are not where we would like them.  He has had a few more episodes of massive swings between high and low with no explanation of that either.  We were hoping to avoid a heart cath in January, but it looks like we will likely not be able to this time.  Cardiology is pointing the finger at his kidney function, but that remains to be seen at this time.  Either way, prolonged hypertension will harm his graft (donated heart) and his kidney further, so it is an issue we are aggressively watching.

One little update on K's for Keegan:  Our last race of the year will be at the North Texas Turkey Trot in Frisco on Thanksgiving morning.  This race benefits the Miracle League of Frisco, a sports league for kids with special and medical needs with whom Keegan plays soccer, baseball, and track.  Fall track focuses on increasing endurance and culminates in the athletes walking or running in the Miracle Mile or 5K at Turkey Trot.  There is no team registration option for this race, but we will be wearing our K's for Keegan shirts, weather permitting, and will meet up before the race at the northwest corner of the AMC movie theater.  Please comment below or email me for more information!  I will also be running the Dallas Marathon for Texas Scottish Rite Hospital for Children, where Keegan sees his rheumatologist, on December 14.  If anyone is running the full or half and wants to meet up and wear a K's for Keegan shirt, I'd love to see you there!

Last bit of housekeeping - we have deleted the email account for this blog after some spam problems and a false Facebook account being set up with it.  If you don't have an email contact for me or Gray, you can always comment below a post, and we will get in touch with you.  

Whew, I think that's all for now!  Hope everyone is staying warm in this weather.  Have a great holiday season!  


Unknown said...

Thank you for posting. I still pray for Keegan and you all.

Anonymous said...

Hi Maddie! Good to hear an update on Keegan...those pictures are so awesome and he looks like such an adorable little boy! It's so crazy how they are becoming little boys and not babies anymore!

I am also running the Dallas Marathon, with Team in Training to benefit the Leukemia and Lymphoma Society. My uncle Paul (Matthew Gephart's/Gray's Jesuit classmate's dad) died of AML in March. He was a runner/marathoner and is the reason I run. It'll be my FIRST marathon!

Please email me your new email...I'd love to keep in the loop with your K's for Keegan races and just keep in touch in general. XO, Tari Anne

Unknown said...

The Johnston pictures just made me cry. God bless Keegan and Johnston. Many prayers for both families!