Hope

We had a great semi normal weekend last weekend.  Filled with family, friends and fun.  It was nice.  I'm exhausted.  But, I'm grateful for the memories that were created. 

Last Thursday we headed here:

It's no secret that I LOVE my Trojans and Trojan Family (yes it does exist) and so ending up at Keck with Riley was relieving.  Why?  Because after months of wondering when? where? how?  we finally landed somewhere that will be able to help Riley with her bilateral Cochlear Implants.  I can't even tell you the number of times I've cried, vented, called, tried.... to just make this a reality. 

We met with Dr. Rick Friedman.  And just as his bio says he is one of  the nicest  and easiest to talk to doctors I've met in a while.  When he asked if I had any questions I let him know I had done a ton of Dr. Google research.  He then asked if he checked out ok.  He does.  He has a ton of experience and passion behind what he is doing.  Doctors like that are the ones you want to be in front of and want on your team.  My only nerves that day came from navigating the parking structure.  Really, trust me, if you'd driven around the parking lot maze like we did for 37 minutes (yes, I timed it) looking for a parking spot, you'd understand!

If all goes as planned, Riley will have her CI surgery on December 23rd.  The best Christmas present I have ever received.  Really.  Now we just need to get past the ACTH and hope that all goes well with that and we're good to go.  And..... Riley will be the 1st ever Pediatric CI at USC.  That my friends gives me chills.  The excitement I had walking out of that appointment really helped set the tone for the rest of the weekend.  We are so thankful to each and every person that is helping to make this happen.

Friday morning Riley had PT and she jumped right back in.  Her therapist had her on her knees and arms practicing lifting her head up and she did this:

Riley trying her hardest to lift her head,

Holding her head up with some support.

Friday afternoon I ran over to Logan's school to join his class for the October birthday celebrations.  There were 4 birthdays in the class in October and Logan had been waiting since September's celebration for his party!  He really is my child, making his birthday last all month long!

 

Mmmm cupcakes!

At the front of the class with his birthday balloon!

Friday night we were able to meet up with Tia T and Uncle Mike for the Zac Brown Band concert at the Hollywood Bowl.  Grammie (my mom) came over to stay with the kiddos and hold down the fort so we could get out for some grown up time.  It was a blast and a night we'll remember for a long time.  I really wish we could make these "date" nights a more regular occurrence.  And trust me we try! 

Saturday morning we headed home early so I could grab Logan and head to the USC game.  Logan was so excited about seeing Traveler and the guy on the horse (Tommy Trojan).  We met up with Grammie, Pa Doug, Uncle Brad and Molly before the game and Logan and Molly had a blast playing around together.

Best Cousins

Cheese with Grammie

Tallest to shortest with Pa Doug

 

Seriously!!!  Where did this big kid come from!

Game time with mommy

I've missed this view!  Finally at a home game!  My happy place!!!

I absolutely love that Molly and Logan just adore each other.  Logan was so worried about Molly holding his hand and staying close to us!  Our seats are a couple tunnels away from my parent's and by the end of the 1st quarter Logan was anxious to get back to watch the game with Molly.  There happened to be a few seats open around Grammie and Pa Doug (not a surprise to those following college football :() and so Logan was able to watch the rest of the game with Molly.  I'm thrilled I decided to go to the game and take Logan.  He had a blast and is turning in to quite the USC fan!

Sunday we headed to our first Halloween activity which was Trunk or Treat at Miss Mia's preschool.  Batman and Robin were adorable and although we missed being able to bring Riley (crowds are not good for her) we still had fun.

Batman and Robin!

Mason learning how to "Trick or Treat"

Smiles with Mia

Yesterday Logan had his first field trip to the Pumpkin Patch.  I was so happy that I was able to attend and watching Logan and his classmates together is hilarious!  Those kids have some energy.  The rain held off just long enough for us to take the tractor ride, visit the animals in the petting zoo and have a quick tour of the park.  The trip ended with the kids picking out small pumpkins and decorating them.  Being the daughter of the ultimate PTA mom I've always wanted to be able to do the same for my kids so,  it was nice to be able to participate and be there for Logan.

More selfies with Logan

Yeehaw

Some of Logan's K friends

Today we had an ophthalmologist appointment and all went well.  We take Riley to The Center for the Partially Sighted and everyone that works there is just wonderful.  The doctor that Riley sees lost his own sight a few years ago.  He works with an optometrist and uses his computer to notate what is going on during the exam etc.  He explained Riley's actual vision to me today which I found interesting.  I was under the impression that Riley could not see out of one eye at all.  This isn't the case.  Without glasses Riley sees everything very thinly.  The example he used is that a 32 inch door opening looks like 12 inches to Riley.  Being me I joked that Riley thinks her mom is skinny!  Her glasses help to correct this and make things look like they normally would.  Once we get the written report from them I will have to consult Aunt Kara (my SIL) to have her explain to me more what it all means.  They were throwing around terms I have never heard of.

Tomorrow Riley has Visual Therapy, PT and ST.  It will be a busy day! 
Riley is doing ok right now.  Riley's ACTH dose was cut in half on Friday.  Unfortunately, with the dosage decrease Riley has started back with her seizures.  Not as severe at all.  Much shorter.  But, they are still back.  I am anxiously awaiting a call back from her neurologist's office to see what's next?  Dosage increase?  Office visit?  I'm just not sure.

Friday we'll have a repeat EEG.  I'm hoping it goes well.  I say hoping because the last time we had a routine EEG we ended up inpatient for 6 days.  We're still not recovered from that stay and would really like to avoid being inpatient for a while!

Queen of the side eye!

After all of that I am ready for a nap!  I will admit though that it was nice this weekend to feel "normal".

We hope you all have a very memorable and Happy Halloween.  Fight On!

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

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