Summertime, patience and the 2014 CHOC Walk

We're definitely in the middle of summer around here!  Most of our afternoons are filled with swimming and backyard time and the weekends are spent basically living in the pool and around the bbq!  We've learned to embrace the fact that we don't get the chance to go too far from home.  And we have an amazing family and group of friends that join us on the weekends to "hang out".  Logan is now a little fish swimming everywhere in the pool and begging to not get out!

We've also been busy with birthday parties, get togethers and 4th of July.

We're still in limbo mode as far as when we will head inpatient to get going on the keto diet.  We'll either be heading to CHOC 7/21 or 8/18.  We are pushing for 7/21.  It's SO SO hard waiting.  Especially since Riley is still having the "S" words daily.  In fact on 4th of July she had a pretty bad one at our framily gathering.  I suppose we've become semi used to them but in the past whenever she's had a series of "S" words or couldn't stop them we were immediately changing paths and finding a solution.  Patience is not my strong suit!

So we're doing what we can for Riley.  Our parental instinct is telling us that these are much more common when Riley is hot, around strangers or away from the comfort of her own home.  It just seems that any of these situations can exacerbate her "S" words.  So we wait and are still hoping and praying that the Ketogenic Diet is what makes a difference for Riley.

In the meantime Riley is working hard!  She is amazing us in therapy and continues to show us that persistence and patience are key when it comes to Riley.  We caught her on video the other day showing us what she could do while in the stander.

Riley playing with her piano

Riley continues to work on new things in PT.

 Spending more time on her stomach.

 Today she was having an "on" day with her visual therapist and was tracking a ton.  She even wore a  "patch" on her strong eye to help strengthen her weak eye.

It amazes us daily what Riley is able to do and when she does something new, no matter how big or how small, we celebrate.  She's making this progress while waiting to take care of the "S" words and being heavily medicated.  Riley is a mighty fighter and gives us strength on days when we feel like we've had enough.  Just one snuggle session with Riley can cure anything!

We are also happy to announce that we will be participating in the 2014 CHOC Walk.  Last year our little team came in 5th place overall and Pa Doug was 2nd place overall for individual participants.  Made me super happy especially since we joined in late August and had no idea what we were doing!

Well now we're veterans!  Haha.  Not really but, we know what to expect.  So, will you join us?  Whether you are in the So Cal area and can join us by walking on Sunday October 12th or live elsewhere and want to help support our team.  We will be changing things up a bit and doing some creative fundraising ideas in the next month or so.  I'm still putting everything together and will share soon what we're hoping to do.  We'll also have a new fresh batch of "Team Riley" shirts available in the next few weeks.

I'm sure I said it last year but it's worth repeating.  From a very young age my parents taught my brother and me the importance of giving back.  I had always wondered what my "cause" would be and what I would be drawn to.  Through Riley's illness we have been drawn to giving back to CHOC.  Eventually, we hope, that Team Riley can do even more beyond CHOC but it will be a while before any of my crazy ideas get off the ground!

CHOC and the PICU teamed saved Riley's life.  The feelings of gratitude we have for the care Riley received are hard to verbalize.  To this day, as you know, most of our doctors are through CHOC and we are frequent visitors to the hospital.  We feel "at home" at CHOC.  Just one visit to another hospital and we are reminded of why we are so thankful to live near CHOC.  Shoot the valet guys even know me by name and are always there to greet us no matter if we're coming for an appointment or for a short stay.

To join us in walking you can click the link below and it will take you to the Team Riley page.  The minimum amount that needs to be raised in order to walk is $50 by October 12th.  The money can be raised through donations or paid directly to CHOC the day of.  We hope to see you there!
Join the Team Riley CHOC Walk Team!

We'll have our individual pages set up in the next few days.  I will include the links next time.  We'll all be walking in support of this great hospital and hope that Riley will be able to join us this year!  (Last year, much to our disappointment, Riley was inpatient and unable to walk).

Fight On!

Love,
Dave, Megan, Logan, Mason and Courageous Riley

Hospital Day 4!

First, we have to thank ALL of you.  Sometimes I feel like we ask so much of you all.  For prayers, thoughts and support.  And every single time you are all there to hold us up.  My friend Kristi always describes the support they receive while on their journey with their daughter as their village.  I can truly say you are all our village.  Today has been an extremely emotional day due to multiple things.  We are happy to say though that our Little Miss has once again amazed us and is doing well.

This morning Riley's heart rate was all over the place.  I think for 2 hours straight she kept the monitor beeping every few minutes.  She was sleepy so a lower heart rate isn't unusual but, this was the type of sleepy that comes in the middle of the night.  Even when I tried to annoy her, for lack of a better description, she still stayed in the low wonky heart rate range.  Kept this mama on my toes and of course had me fearing the worst.  Just a natural reaction I suppose.

We had the sweetest nurse the last 2 days, quite the cheerleader for Riley in fact.  Even she was worried.  The attending pediatrician came in while Riley was messing with the monitors and had the "room" (techs monitoring the continuous EEG) check to see if there was any correlation with Riley's weird HR and her EEG.  Nada.  So, she ordered an EKG.  All along we have been so happy that all of Riley's major organs function fine so the worry that overcame me when I thought of the what if's was huge.  Deep down though I really thought it was probably just because of all of the medication in Riley's system.  Like I said last night she is sleepy!!!

EKG was normal.  Labs.  Well labs showed her Depakote level at 62.  Yeah 62.  We were not expecting that.  Last night they were at 136.  They are aiming for a level between 100 and 125.  So we have a ways to go....

Riley's seizure activity has calmed down.  The only thing showing on the EEG is a very small electric seizure that is not having an effect on her outside her brain.  Sort of like electric charges here and there.  I asked if these would have any long term effect on Riley and the general answer is no.  Riley has brain damage.  She has areas that will have this type of activity because of what she's gone through so... I suppose this is the best case scenario???  I mean they've figured out how to control the infantile spasms (IS/ACTH) and now the tonic/clonic seizures (Depakote) so I suppose we should be happy????

My biggest gripe with these meds is the state Riley is in right now.  Tired, sleepy, lethargic.  And I told the neurologists point blank that I really hope this isn't how she will be moving forward.  I've been promised she will get used to the meds.  And they have been super loading her to get her levels up so it is to be expected.  I can't stress enough that for Riley to progress she can't be this way.  And for Riley to live in life she can't be this way.  I believe I used the term "quality of life" and "future" multiple times today.

I still know deep down that most of these doctors don't see much potential in Riley.  I mean if I tell them she's smiled, rolled, held her head up etc. they still look at me like.........crickets.  I really should have busted out the video today.  Too many other things on my mind though!  And I'm ok with this.  She's already amazed them so I have faith she'll continue to do so.  It's just what she does :)

This is where the nurses are little angels.  They see these cases so much and have been able to tell us what happens after seizures are controlled.  And, they see progress.  Even the attending neuro I spoke to today agreed that a bit of regression therapy wise was expected but, Riley should pick right back up where she left off.  So maybe, just maybe, I should give her a bit of credit for being semi positive.... Most doctors with "neuro" in their title just aren't positive.  That's just the reality of what we've dealt with. 

So, because the EKG was good and because we are just waiting now for the med level to get to where it needs to be Riley, got to get the head wrap off.  Problem is that thing is HARD to get off!

I worked with the tech first to get the electrodes off (took some tangle spray and waterless shampoo) and then let Riley's hair soak in the detangler.

Once that set in for a bit we gave Riley a bed bath and I worked on each electrode spot one by one to get the gunk out.

For the most part Riley's hair is gunk free but, it will probably be a bit before it is all completely out.

Riley's looking better and her swelling is subsiding.  Now we pray, hope and cross all of our crossables that tomorrow is homecoming day!

Thanks again for your support!  And remember to hug those you love and tell them you love them tonight.  We've been reminded how precious life is today and we're thankful we still have Riley here to fight for.  It's something we will never give up on....  Ever.

Fight On!

Love,
Dave, Megan, Logan, Mason and Courageous Riley!!!

More ACTH....

Often times I sit down on Mondays to update you all and then forget where we left off!  Sometimes the days and weeks just all blur together.  It's possible that I will end up updating you all more now so that I don't lose track of what I need to tell you.  Really it takes me 15 mins to go back and re read what I wrote the last time!  Which will either be annoying or welcomed depending on how much you like my updates :)

Ready to head to PT.  Looking very swollen. :(

We had a wonderful Halloween.  If you're my fb friend or follow me on IG some of these are repeats!

Super girl with her Superhero brother!

Our crazy family!

Trick or treating crew minus a couple.  The 3 superhero's were too cute trick or treating together!

Friday we had Riley's EEG.  All went ok.  We didn't have to stay overnight so I was pretty happy that what I told Riley this time was true.  No needles and no staying at CHOC.  We've noticed that Riley's anxiety starts to increase when we drive to CHOC.  As soon as we get off of the freeway she starts drooling more and breathing more heavily.  I've tried taking different exits and going through different entrances but, she still knows when we are headed there!

Getting ready for the EEG machine.  Looking at mommy like really this again.

All bandaged up for the EEG.  You can really tell how swollen Riley is in this picture.

I had a call this morning from the neurologist's office that I just missed (and of course it was the doctor) so I am waiting to talk to him about the EEG at some point today.  Hoping for decent news and nothing too surprising.  I'd assume if it was a pressing issue we would have been called Friday.

I also made a new bff Friday.  She works in Riley's neurologist's office.
I could seriously hug her and owe her a gift basket of some sort.  You see all last week I was having a difficult time getting through to the staff at the neurologist's office that I needed certain things done and needed answers.  So Friday after the EEG we drove across the street, I parked Riley and her nurse outside of the office, and I just stopped by.  If I've learned one thing working in sales it is that more gets accomplished face to face then over the phone!

I encountered another rude lady that works at the front desk when I walked in. And by this point I'd had enough  so I  just blurted out that Riley was on a med that we were told we couldn't "ef" (yes I said "ef" not the real word) around with and I needed answers now.  Not tomorrow when they would be closed, not later that day but, now.

In comes Gina (I changed her name for privacy purposes) and seriously it was like an angel was sent that understood everything I was saying and was ready to help in any way possible.  I left with dosing instructions for the ACTH, an order for the lab, promises of a follow up call (we've spoken no less then 15 times since Friday) and the peace of mind that if I needed anything Gina could help.

Why was this all so important to me?  It was decided on Tuesday that because Riley was having breakthrough seizures again, she needed to go back on the higher dose of ACTH.  This was given to me verbally over the phone though with no further instructions.  I waited and waited for the promised fax that was supposed to be sent.  And like I suspected it never was.  There was no way we were going to play the what to give game with this medication and I needed explicit instructions so that our nurses could actually give Riley the extra dose (Ya know, Doctor's orders).  Apparently, this is something that some people in the office didn't take as seriously as we did!  Add to this the fact that Riley's specific neurologist is on vacation and I wanted to scream...

 So Riley has been back on the higher dose for a week and we'll try again tomorrow to start titrating her off of the ACTH.  As it stands now she will be on the med until mid December which makes me very nervous about her upcoming CI surgery.  If you recall before I said that everything needed to fall in to place for the surgery to take place.  That included the ACTH treatment working.  With the added week of medication I am not so sure where we stand.  But, instead of worrying about that now, I am just going to focus on getting through November.

Finally snuggles on Sunday night with mommy & daddy.

Friday afternoon/evening it was apparent that we were all getting a family cold.  It hit Logan and then Dave and then me followed by Mason.  Seems Riley has been spared for now.  We were extra precautious over the weekend and really didn't even get to hold her as we didn't want to spread any of our germs to Riley. 

The family cold made for a long weekend around the house but, thankfully we all seem to be on the mend.  Yesterday I was even able to take Logan on a mommy date to see "Free Birds".  Super cute movie that we both really enjoyed.  Although, my plans to get Logan to eat turkey this year may be foiled now!

We're back to the grind today.  My phone started ringing early this morning.  Gina was the first call of course :) followed by ph probe/bronchoscopy scheduling, medications, delivery confirmations and therapy rearranging.  These are the days I am thankful for unlimited calling plans!

I'll leave you with a video from therapy last week.  It's of Miss Riley lifting her head 100% on her own and holding it, on her own.  Doesn't seem to be that big of a deal but, I spend a ton of time trying to explain to doctors what she can do.  Most only focus on what she CAN'T do.  Encouraging I know.  Riley CAN do things.  Riley IS doing things.  And as far as I am concerned the sky's the limit!  So here's my video proof for our next appointment.  Yes, I am that mom  :)

Riley lifting her head


Mr. sick saying Yay Sissy!  One of Riley's biggest cheerleaders!

Fight On! 
Love,
Dave, Megan, Logan, Mason and Courageous Riley

Week 1 of ACTH and a Giveaway

We're home and man is it nice!  Riley's meds arrived an hour earlier then scheduled Tuesday at 9:30am.  They were sent from Tennessee so I was a bit worried about them making it in time but, UPS came through!

Tuesday morning was a bit hectic as Logan had Grandparent's day at school so we had to put a plan in place to get all the Grandparent's to school and make sure someone was home to sign for the medication.  Thankfully, everything fell in to place and the timing worked.  Grandpa and Grandma Hopper were able to bring Dave down to the hospital to meet us and we were ready to go around noon.

Riley is still doing well.  I know she is so happy to be home.  Her agitation last night wasn't as severe as it was in the hospital and I am hoping that continues.  She's starting to get a bit puffy and swollen.  Hopefully, this will only last for the first 2 weeks that she is on the higher dose of ACTH.

I was hesitant to write this (fearing I'd jinx it) but, in the last 36 hours Riley has only had one small seizure.  ONE!  Yes, I am yelling.  She's only been on the ACTH for 1 week so this is fabulous progress!  It means the ACTH is working!!!!

I thought I'd explain a bit about ACTH and what it is doing.  It is amazing to me the things that are available now that weren't available just a few years ago.  I've pulled some info from the pharmaceutical company and Infantilespasmscenter.org.  .

From Infantilespasmscenter.org:
"According to the American Academy of Neurology (AAN) and the Child Neurology Society (CNS), the goals of therapy for infantile spasms (IS) are: [3]

• Completely stop the spasms
• End hypsarrhythmia (chaotic brain waves)

Many studies show that when hypsarrhythmia (chaotic brain waves) lasts for long periods of time, brain development can be damaged. However, when babies with IS are treated early in the course of the illness, they may have a better outcome.[3]

Hormonal Therapy

ACTH (Acthar)

ACTH (Acthar) is a prescription medication that may work by helping the body produce natural hormones such as cortisol and by having a direct effect on the brain. It is in gel form and is given as an injection into the muscle. The gel is designed to slowly release the medication into the body after it is injected.
ACTH (Acthar) is a prescription medicine that is used to treat infantile spasms in infants and babies under 2 years of age.[8] (Acthar Medication Guide) In one clinical study, 87% of subjects who received ACTH had no spasms and no hypsarrhythmia within 2 weeks.[7] (Acthar Prescribing Information, 2010)
The recommended dosage of ACTH (Acthar) for treating IS is 150 units per meter squared, divided into two daily injections of 75 units per meter squared each. After two weeks of treatment, the dose may be gradually lowered over a two-week period and then stopped.[7] (Acthar Prescribing Information, 2010) If treatment is successful, the spasms and hypsarrhythmia (chaotic brain waves) should disappear.


And from the pharmaceutical company:

Acthar Is Not a Steroid

Acthar is not a steroid. It contains the hormone ACTH, which stands for adrenocorticotropin ("a-DRE-no-cor-ti-co-TRO-pin"). Acthar is a highly purified preparation of ACTH in gelatin.

How Acthar May Reduce Inflammation

Acthar works in 2 ways:

• Directly with your immune system and central nervous system and with your body to help it produce its own natural steroid hormones (cortisol, corticosterone, and aldosterone)
  • These natural hormones may help reduce inflammation causing your relapse
• Acthar is believed to affect T cells and B cells
  • This action is believed to impact the inflammatory processes

If this doesn't work which we are praying that it does there are other treatments available.  ACTH is the first drug to try though.  So now we sit back and watch this medicine do it's magic.  It's going to be a long 2 weeks until our next EEG!

I have two exciting things to share with you all today as well.

The first is that one of the first doctors that was a part of Riley's case from day one is going to be doing a case study on Riley's missed diagnosis and treatment etc.  Why is this exciting you might ask?  For us, as parents, the one thing we've hoped to eventually do is educate either families or doctors about Febrile Seizures, signs of bacterial meningitis and ways to diagnose it early.  Those 24 hours that we lost were so precious. And can't be given back to us.  When she asked if we would consent to her using Riley's case I couldn't say YES fast enough.  If just 1 family is saved from this heart ache, if just 1 child is diagnosed properly because of what this doctor is doing we will feel like we've made a difference.  And, because we are human, hearing that a doctor is seeing things the way we have from day one was vindicating.

So we're excited to see what becomes of this case study and we'll anxiously await the presentation in February to a conference of 500+ doctors!  We've been told we can attend the presentation.

I also want to invite you all to enter a little giveaway.  I've never done this but, after all of the support we've received and after such a successful CHOC Walk, we figured it was time to give back.

So......
We'll be giving away.........

Your very own 2013 CHOC Walk Tshirt!  Riley is not included in this giveaway!!!

A 2013 CHOC Walk medallion and lanyard........

1 Disneyland Park Hopper ticket (to ship in December and valid through 11/2014)

A $25 Disney gift card!

So.... How do you enter????

2 ways.

Leave a comment here on the blog. 1 entry
Like our NEW Team Riley Facebook page 1 entry
Team Riley Roo

Of course I've waited forever to start this page and Team Riley is already taken!  So Team Riley Roo (Riley Roo being a nickname we have for our little Miss) it is!

I'll take entries until Sunday night at midnight PST.  We'll draw and announce the winner on Monday.

Thanks for continuing to pray for us, think of us and follow us on our journey.  And.... Good Luck!

P.S. Feel free to share the FB page.  The more the merrier!!!

Love,
Dave, Megan, Logan, Mason and Courageous Riley Roo!

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:

Alegria

Andy, Aimee & Sam Swanson

Anne Fisher

Annonymous

Annonymous

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 Grandma 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   Love, Dave, Megan, Logan, Mason and Courageous Riley            I think looking around and seeing all of the teams and hearing about their storeies was inspirational. I also think it was humbling. To know we have Riley and we're still fighting is a good feeling. Some pictires and stories broke my heart. But, as we walked out of Main Street and past the 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 inpsirational kids all around us. I'll leave you with a little picture story of our wonderful day. If you ever feel down or need a pick me up refer to this post. So many happy, wonderful moments with so many amazing people. Life really can be okay if you just choose to see the good all around you. Today was proof it does exist. I think looking around and seeing all of the teams and hearing about their storeies was inspirational. I also think it was humbling. To know we have Riley and we're still fighting is a good feeling. Some pictires and stories broke my heart. But, as we walked out of Main Street and past the 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 inpsirational kids all around us. I'll leave you with a little picture story of our wonderful day. If you ever feel down or need a pick me up refer to this post. So many happy, wonderful moments with so many amazing people. Life really can be okay if you just choose to see the good all around you. Today was proof it does exist.