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

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.

October!

It's hard to believe that it is now October!  We are going to be busy this month.  Logan's birthday is this weekend and the CHOC Walk is the next weekend.  We have many appointments this month, sporting events, a concert and we'll end the month with Halloween of course!

Last week Mason had a double ear infection on top of cutting 6-8 teeth.  I've lost count!  I often find him chewing on whatever he can get his hands on!  We were happy when Friday finally arrived but, knew we'd be busy. We had a ton of house stuff that needed to be done so we would be ready for Logan's party this weekend.  In the midst of all of that we were without a nurse overnight Saturday and Sunday.  When it rains it pours. 


Love this silly kid teething and all!

Helping clean the backyard!  Logan is thrilled :)

Yesterday I was up at 4 am worrying about everything that needs to get done and making sure I got Riley her meds at 430 am and feeding at 5 am.  Of course Riley takes after mommy and slept through everything!  I was able to get 3 loads of laundry and a cycle in the dishwasher done before the rest of the family was up so that was a plus.  As Dave joked with me about the beauty of the couple hours before the sun comes up I briefly considered making it a more regular habit of getting up early until I remembered how much I love my sleep!

We're still in a holding pattern so to speak in regards to the Cochlear Implant surgery and I am getting impatient.  I know things will all work out but, not having something in the calendar and not prepping to actually have the surgery done is driving me crazy.  My unorganized self that has now become attached to my email and google calendar is cringing! 

At the end of every month I look at next months calendar and take in what we are up against.  October has us following up with the Neurosurgeon, Neurologist, Pulmonologist, GI, ENT and Neuro Rehab doctor along with an EEG, lab work, botox and hopefully a bronchoscopy.  We also need to schedule a swallow study.  Looking at all of that exhausts me at first glance and then I start to add in therapy appointments, Logan's school activities and life events in general and I feel out of breath.  This is where the help and support we receive really saves us.

October has also always signaled to me that the end of the year is fast approaching and usually I feel like I blink and it's Christmas.  I'm hoping to be able to fit in a trip to a pumpkin patch with the kiddos again this year and hopefully we can take some time to stop and appreciate the changing season (if it ever decides to really change!).  I have a feeling though that before we know it the calendar will change again and it will be November!  I seriously wonder where the last year has gone....

Last Friday Riley did SO well in PT and had me grinning ear to ear.  She was sitting with slight assistance from her therapist who supported her ever so lightly in her trunk but, she was holding her head all on her OWN!!!  I sent Dave a picture and he was just as proud.

Riley sitting up in PT!

Sunday while hanging out together on the couch I tested Riley again and she was able to hold her head up while I held her arms and pulled her up towards me.  It made my day.  These milestones make all of the hard work and worry worth it.

This weekend the twins also turned 19 months old.  I used to lose count of the month birthdays but, they mean so much more to us now.  Sometimes the day brings back happy memories and then there are the times that I start my "it's been xxx since" and "Riley got sick xxx months ago" or "when the twins were xxx months old they did xxx."  And then I snap out of it and realize I need to get back to living in the moment.  It's the only way to really get through the day.

Trying to get a good month birthday shot was impossible!

I still have a long list of to-do's before the big 5th Birthday Batman shindig on Saturday.  I always run around like a crazy person the week before parties and I am lucky that this year I was able to enlist the help of a few special people to help put the finishing touches on the day.  I can't wait to see what arrives in the mail this week!

Before I go though I have to thank, Pinterst Told Me To and Sheaffer for an amazing gift that I am receiving.  On a whim on Friday I entered her contest for mom's of special needs children. 

Pinterest Told Me To

 

I really did not think that I would ever win and when I woke up Saturday morning to her email saying I'd won I was giddy.  Once I get some time to use the Loft gift card I will have to share what I am able to get.  For a mom who's wardrobe additions recently have been from Target and Old Navy, because really who has time to make it to the mall, I am excited to spruce things up in my closet!  Thanks again Sheaffer!  It really came as a complete surprise.

I also have to share the success that our team is having with raising funds for the CHOC Walk.  I initially set a goal of $2500.  As of right now we are up to....... $8670!!!

CHOC Walk Team Riley

 Much of that is thanks to Pa Doug who has been telling Riley's story to anyone who will listen and drumming up donations.  Uncle Brad and Hannah have also raised quite a bit for the walk, thank you thank you thank you!  It's quite possible that by the day of the walk we will surpass the $10,000 mark!  It makes me teary just thinking about it.  So thank you to all of you that have donated whether it be through our team page or through our individual walkers.  It makes this mama happy to know that there are so many people pulling for us in every aspect of our life.

We hope you all have a great week!

Fight On!

Love,

Dave, Megan, Logan (the almost 5 year old!!!), Mason and Courageous Riley