Tuesday, October 15, 2013

CHOC Walk and ACTH

**** Meant to post this last night and then fell asleep mid-post!  I know if I don't get this up it may be awhile before I can write another one!  We're waiting on a UPS delivery of Riley's meds and then we'll be headed home!!!****

You know those days when you are so exhausted you don't even know how you are going to make it to your bed.  Yesterday was one of those days!  Heck, I think I am still tired today.  However, my heart is so full and I am so happy we were able to be a part of something truly magical. (As cheesy as that sounds)  In fact, we're already talking about next year!  And the best news from today is that as long as everything goes as planned Riley should be home tomorrow!!! 

Riley is doing really well!  The ACTH is working from what we can tell so far.  This is such a relief.  But.... Riley is starting to feel some of the side effects.  We've termed this "roid rage". I had to step out of the room tonight for a bit of a breather because it is really hard to watch.  She can't get comfortable and tones and flexes until she is red faced. I don't know how we are going to get through 8 weeks of this.  However her startle seizures (IS:Infantile Spasms) have become fewer and fewer and without jinxing anything I think... just maybe we've crossed over to a new baseline.  Riley's phenobarbital will be increased a bit as well.  Last night she had an extra large does to load her up. Please continue to join us with prayers and good thoughts and whatever you have to help keep this positivity going!  And to help get us through the next 2 months.  I just keep reminding myself that this is best for Riley in the long run.  It's the unknowns that are leaving me a bit on edge though.   But, we'll power through this just like everything else and just take each day as it comes.

Yesterday was THE CHOC Walk.  It's been a crazy couple of days but, the memories that we made are priceless.  Simply wonderful.  And, because we decided with Tia T and Unlce Mike last minute to get rooms at the Hilton near Disneyland Saturday night the memories will continue for years to come.  It was, hands down, one of the best times we've had with the boys in long time and add in Miss Mia, Tia T and Uncle Mike and we now know we need to do something similar again.  Logan was SO excited to stay in a hotel and both boys loved playing around and exploring every nook and cranny in the room. 

Grandpa Hopper was able to come down to CHOC and stay with Riley so that this could all become a reality.  We always know when Grandpa is at the hospital that Riley will be taken care of.  It makes it so much easier to be away although I will admit that there were many moments Saturday night/Sunday morning that I felt sad.  We were supposed to be doing things with Mia and the twins and Logan all together.  Like we did last year when we all went to the pumpkin patch.


Those are the times that are hard for me.   When we're apart or doing things normal families do  my heart is definitely torn.  We were definitely missing a huge part of our family. 

We hit up Downtown Disney, without restaurant reservations Saturday night, yes I know all of you Disneyland lovers/planners are cringing.  Right around the time when I was ready to throw in the towel and just grab Mcd's we had a text from HOB that they had a table ready.  Thank goodness.  Mason without a nap is not fun!  Trust me!

After dinner we went back to the hotel and hung out before the fireworks at Disneyland started.  We had an amazing view from Tia T and Uncle Mike's room!  It was the perfect ending to a wonderful night! 

Yesterday I was up at 4am so that I could blow up the balloons we had for the walk.  Apparently Mason thought it was a good time to get up as well!  He's was in bed early last night.  4am is not good for anyone!

We had a bit of an issue with the valet at our hotel in the morning and I honestly didn't think we'd ever make it over to Disneyland.  Add in the fact that a zillion people were trying to get in to the parking lot at the same time and my anxiety was in full effect!  We made it though and met up with our amazing team of walkers.  The rest of the moring was wonderful, perfect.  Better then we could have ever imagined.

The entire event still leaves me choked up.  The support we had/have was/is amazing.  We've raised: $15,080 so far!  And I know we still have donations coming in.  How amazing is that!  For our first go round and deciding to walk pretty last minute I am proud of what our little team did!

Thank you to:

Andy, Aimee & Sam Swanson
Anne Fisher
Augie flores
Aunt Kathryn
Aunt Kathy & Uncle John
Aunt Linda
Beverly Marksbury
Charles McCluer
Community Bank
Craig Schmidt
Craig Stewart
Deb Blanchard
Diana Cravotta
Doug & Jan McEachern
Escarciga family

Eva Margueriette
Gatt Family
Gina Parrille & Family
Grammie & Pa Doug
Jan & Doug McEachern
Jeff Jaramillo
Jimmy Fahey
Kari McWhirter
Kathleen Malone
Katie Figueroa
Keri Sikich
Kristen Hill
Lindsay Jenkins
Lindy Evans
Lisa Mitrovich
Marie McDuffie
Mark & Joanna Crawford
Mark Miskinis
Mary McGinnis
Mike & Katie Shilling

Patti Hegarty
Penny Grund
Roberto Gutierrez
Rudy and Beverly Hopper
Sondra Stokes
Sue Montgomery
The Eggleston Family
The Giordano's
The Hopper Family
The Kneiers
The Leininger Family
The McEachern Family
The Puertas Family
The Schmidts
Uncle Ed, Aunt Toni, & Bailey
Yolanda Agajanian and Family
Chris Gallo
Maria Sacco
Steve Miller
Felicitia Colon
Naseem Waheed
Ewa and Richard Shilling
Jan McEachern
Selena Miller
Marty Salazar
Matt and Dana Stanman
Sue Seeker
Leane Stephens
Pat Seeker

Looking around and seeing all of the teams and hearing about their stories made the day even more special. I also think it was humbling. To know we have Riley and we're still fighting is a good feeling. Some families don't have that option.  As we walked out of Main Street and past the infamous Castle we heard "was in a wheelchair last year and is walking down Main Street this year". It was hard to not be teary. So many inspirational kids/families all around us.   We also ran in to many of the special people that have been a part of Team Riley while caring for her at CHOC and Healthbridge.  Some of the most caring, special people we have met along this road.  I just wish we'd had Miss Riley with us to say hello!
I'll leave you with a little picture story of our weekend and wonderful day.  We're looking forward to making this an annual tradition and hope to add many more walkers to our "Team" next year!  Fight On!

Our reason for walking!  My hero Miss Riley Roo!!!  Riley got a CHOC Walk medallion and daddy got to practice giving her shot.
Before heading to the hotel we stopped by to see sissy!  The boys had the 5th floor playroom to themselves!  I'm amazed we were able to leave!


 Downtown Disney fun!
Playing around in our jammies!  And... The Disneyland fireworks show!
Good morning Anaheim!!!  We're ready to walk!
Shoulder rides and walk fun!  Logan & Molly had a blast together! #memories
Checking out Disneyland!  Storm Troopers and Princesses cheering us on.
Grammie pushing the stroller!  Stroller dads!  One happy big brother!
Mia & Daddy (And some of our most favorite PICU nurses in the background!) Baby Luke walked too!  My love & rock!  More shoulder rides!
We made it to the finish line!!!!
Tired brothers!  The CHOC Walk is hard work!
Our amazing walkers!  The kindest, nicest group there was!  XOXOXO
Dave, Megan, Logan, Mason and Courageous Riley





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