Thursday, December 26, 2013

1 Year

1 year, 365 days.

Last year at this time we sat cuddling Riley on our couch feeding her pedialyte and water through a syringe.  Little did we know that the doctor who we saw in the ER that morning had missed the obvious signs that Riley had Bacterial Meningitis.  We rushed her back to the ER early in the AM on the 27th and the rest is... well is what it is.

We spent the first few days not knowing what the future had in store for Riley.  Quite honestly, we prepared to say goodbye.

This has been the toughest year of our life.  The toughest thing we have ever had to face.

Through it all one little girl has shown us that she is braver then anyone we know and is a fighter.  Riley is our hero.

Thank you for being along for the ride.  It's not over and has only just begun.  This is Riley's story and we are here to help her write it.

The video we're posting covers the last year of our lives.  It's long but, how do you cram 1 year in to 20 minutes???  Each song is a song that has helped us to get to today.  Whether we listened to them in times of deep sorrow or times of happiness they are songs that have helped us get to today.  As have each of you.
Team Riley 1 year later

Thank you for your amazing support.  We look forward to seeing what the next 365 days bring for Miss Riley and our family.  And as always we Fight On!

Dave, Megan, Logan, Mason and Courageous Riley


Tuesday, December 24, 2013

We Wish You A Merry Christmas

In an ideal world this post would be graced with a copy of our Christmas card but.... the company that shall not be named (whispers.. Vista Print...) messed up my order and our cards won't be to our house until the 26th.  Oh well.  I guess if I've learned one thing this year it is that sometimes things just don't go as planned.

Thankfully, things are going great for Riley.  We headed home Friday early afternoon and Riley rested all weekend without any complications.  Friday evening I had a phone call from Dr. Niparko as he stepped off a plane in Denver to visit his mom.  Really showed me through his actions that this was all meant to be.  Knowing we had his cell number "just in case" helped us all rest a bit easier this weekend.

We'll head back to the audiologist at the John Tracy Clinic (coincidentally right behind my sorority house at USC) in 3 to 4 weeks.  It's at that time that they will begin to program Riley's CI.  While we don't know that this will work, we do know that so far everything is looking up.  Now we just hope and pray the implant can provide assistance to Riley.  I had a friend mention that we shouldn't expect the "You Tube" moment when we turn Riley's implant on and all of the sudden it's like nothing ever happened and she's hearing and talking again.  We're being very realistic in knowing this is going to be another long road for Riley.  Getting a CI takes a ton of dedication and work on both the patient and support system parts.  For now we are continuing to learn as much sign language as we can and will be prepared to start 2014 with many Singing Time videos and other tools to help us help Riley.  One day at a time....

Friday night Tia T, Uncle Mike and Mia came over for dinner.  There is nothing like an almost 2 year to really show you that kids don't see disabilities or differences.  The first thing Mia does when she comes over is head straight to "RyRy's" room.  A part of me aches inside as I wonder what could have been but, the love that she shows to Miss Riley is so innocent and real.  We could all learn a thing or two from the little people in our lives.



Before they came over we headed to Costco to stock up on some necessities.  While we were there an older gentleman approached Mason and handed him a $1.  Just because.  He had a stack and was walking around the store giving them to kids.  All around us the spirit of the season has been evident and little gestures like this have really helped to keep us in the Christmas spirit.

We stuck around the house this weekend to make sure Riley was healing well.  We did sneak out for a couple hours on Saturday night to see Pa Doug's new Woodie.  It's all Logan can talk about!  Merry Christmas Pa Doug!

As we get ready to celebrate Christmas we're scrambling like every other parent to wrap all the presents and make sure everything is ready for the big guys arrival.  We'll visit with Santa tonight (better late then never???).  We really wanted to avoid the mall Santa due to flu season and Riley's compromised immune system so I am grateful for the opportunity to visit Santa in a more intimate setting after my families celebration together tonight. 

Although we will enjoy celebrating and spending time with family and friends we also know what lies ahead.  It's hard not to.  The memories are still so vivid and raw.  But, for now we will cherish the moments we have together.  And celebrate the fact that we are all together on this special day.

It's been a year we will never forget.

We wish you all a very Merry Christmas!

If all goes as planned I'll be back on Thursday with a very special video to share.

Hug your babies, tell those that you love how you feel and remember to always Fight On!

Dave, Megan, Logan, Mason and Courageous Riley!

Thursday, December 19, 2013

It's go time!

I know I usually say we try and take things one day at a time but, right now it seems like we need to take them one hour at a time!  I have to apologize in advance as I don't have any pictures to add this evening.  We just got home from a city planning commission hearing (yes, our neighbors are still opposed to having a rehab facility for TBI patients in their backyard).  We did learn tonight that the facility will also have an outpatient rehab for PT, OT and ST.  This development may or may not have made me want to jump with joy.  But, I'll save that for the actual City Council meeting next month :)

Sunday I received an email from Dr. Niparko.  A doctor I’d  heard of but we'd never met with him.  He happens to be Professor and Chair of the Otolaryngology department at USC and just recently came to USC from Johns Hopkins.  He needed to talk to us and the fact that it was a Sunday sent a zillion red flags up that something was up.

Dr. Niparko has been part of the team trying to get Pediatric Cochlear Implants approved at USC.  We knew all along that the last hurdle before surgery proceeded at Keck would be to have the Board of Directors approve Riley’s case.  After a meeting sometime last week they decided that for now pediatric implants need to be done at CHLA.  And this is where we held our breathe waiting for what he’d say next.

Thankfully, Dr. Niparko has privileges at CHLA and works there in the ENT clinic a couple days a week.  So he will be taking Riley’s case on.  He also knew how important it was for us to have this surgery done so they made room at CHLA for Riley to still have her surgery done tomorrow.  Since things changed so unexpectedly we had to roll with whatever they had planned for us this week.  Which meant… instead of our Pre Op appointment at Keck today, we headed to CHLA for our pre op appointment and to meet Dr. Niparko yesterday.

We’ve never been to CHLA so this is a whole new facility for us and it’s going to take some getting used to!  And in LA traffic getting to CHLA is sort of a nightmare.  I’ve never been so thankful that the majority of our doctors are at CHOC then after yesterdays fiasco of a morning!

We pre registered, met with the nurse practitioner to go over Riley’s history (you know our most favorite thing to do ever).  The NP was quick and super understanding.  She didn’t dwell on how Riley got sick nor did she ask if Riley’s twin was “normal” (yes, we had a nurse do this last week).

After that we headed over to the clinic to meet Dr. Niparko.  Both Dave and I have spoken with him several times this week and emailed with him so I knew he’d be a decent doctor.  He's really gone out of his way to make sure we know Riley is being taken care of and is in good hands.

We’re set to go for surgery tomorrow at 730 am.  However, some more last minute changes were made during our meeting.  I’m still not sure how I feel about them.  It’s possible that I need to relax and realize that he’s the professional and he knows what he’s doing but, a part of me is scared that there is more behind his decisions.

Dr. Niparko only wants to do one of Riley’s ears right now.  After she heals from this surgery we’ll be looking at doing this again in the other ear in 3 months.  His reasoning is that due to Riley’s trach, g tube, seizures etc. he doesn’t want to keep Riley under for longer then necessary.  While I guess I agree I am frustrated because I think doctors that first meet Riley have a hard time looking past the trach and g tube and seeing that other that those extra accessories and a seizure disorder her other organs are fine.  So we’ll go with the flow and trust his decision.  I’m just taken aback that he walked in talking about a bilateral implant and left deciding to do one.  I also worry that they won’t see the type of response they want from this implant and they’ll decide to not do the other.  Irrational?  Perhaps?  But, when you are fighting day in and day out for your child every and I mean every thought crosses your mind.

They’ll start with the left ear.  We know Riley could respond to us from this ear all along so I guess this  is positive.  Most of your speech comes from the right side of your brain which is why they start with the left ear.  My fear with this though is that the majority of Riley’s brain damage is on the right side of her brain….

But, only with time will we know what the implants will do for Riley.  And for now we are doing our best to get Riley what she needs. 

After months of trying to get this surgery scheduled.  After switching doctors, hospitals and calling more people then I can count I sit on the eve of this surgery still in shock that tomorrow is THE day.

Please keep Riley in your prayers and thoughts.  Her surgery is the first one of the day and we’ll be up bright and early to get her to CHLA at 5:30am.  Surgery should only last a total of 90 or so minutes.  The actual procedure will be more like 30-45 minutes. 

If all goes well and Riley comes out of the anesthesia okay we hope to be home by the early afternoon.

Now to try and sleep…

Love you all and thank you for continuing to support us as we take another huge step for Riley.

Fight On!


Dave, Megan, Logan, Mason & Courageous Riley!

Friday, December 13, 2013

Busy, busy, busy!

We've had a quiet but, busy week.  Last weekend and Monday Riley was still very sleepy.  It's possible she was fighting the cold we all had or still was having side effects from the ACTH and addition of the Depakote.  We're hoping the sleepy days start becoming fewer and fewer!  We got our tree last weekend and made the obligatory gingerbread house with Logan.  It is definitely feeling like Christmas is near!

Yesterday, we had a GI appointment.  It was a follow up to the endoscopy and PH probe study.  The good news is that we can stop talking about the nissin (fundoplication procedure).  The doctor we met with yesterday seemed a bit shocked that it was ever brought up.  While Riley's study showed that she was on the high end of normal for acidic episodes ,which was good, the episodes she is having are lengthy.   But, the biopsies done were normal so the doctor wasn't concerned.  Fortunately, these are occurring in the lower esophagus and not higher up which would be a concern because she would  be at risk for aspirating.  So for now we'll continue with the Prevacid and hopefully that will manage the acid reflux she's experiencing.

This morning we all loaded up in the car and took Logan to school so that we could attend the family Chapel service that the school was having.  Logan really wanted us to all be there.  Unfortunately Dave is working a couple hours away right now but, Mason, Riley and Riley's nurse Kathy were able to be there with me.  My heart has been heavy lately and the music and words were what I needed to hear to start off the day.  Watching Mason grab Riley's hand and leg as we listened from the back reminded me that those two will always be close no matter what.  Like Riley's nurse Kathy said to me as we were driving home from therapy today, Logan and Mason are really the best therapy Riley could ever have. 

After dropping Mason back off at home and getting Riley her meds and morning feeding we loaded back up to head to therapy.  Riley was sleepy.  And I was nervous that my decision to take everyone this morning was going to backfire and Riley would sleep through PT.  She spent the first 10-15 minutes being sleepy while she was being stretched.  Then it was as if the "lights" came on and Riley was rolling from side to side.  She was also looking all around and following voices.  The Riley we were seeing before the Infantile Spasms appears to be back.  While Riley's therapist was out of the room I sat Riley up and touched her hands to the musical toy they had out for her.   I did it for her a few times and then encouraged her to try on her own.  Although Riley's hand didn't make it all the way to the toy she was moving it and trying as hard as she could to touch the toy.  It feels like we are watching Riley's brain re wire right before us.  And as I type this I'm teary thinking about how hard she is trying.  For a 21 month old who has already been through so much and who goes through so much daily she really is a fighter.

Next week is the CI surgery.  We have a pre op appointment on Thursday morning.  I am hoping that all goes well on Thursday and that we get the all clear from the anesthesiologist and pediatric internist for the surgery.  I really don't see any reason why we won't.

As we get closer to December 26th I try not to relive the day over and over in my head.  I can still vividly tell you all that happened from that first ambulance trip on the 26th until Riley was intubated and transported to CHOC on the 27th.  And, it doesn't feel like it was almost a year ago.  Sometimes it feels like just yesterday. 

While thinking about the day and what we wanted to do together as a family I also had an idea for a special video.  It is very possible that I would have been able to put something together myself but, my nephew Drew is much more talented in this area so he's helping me out.  Last night he posted a "trailer".  And I've watched it at least a dozen times.  If you haven't seen it yet you can view it through the link below.  It's just the quick version of what I think is going to be a wonderful final video!
Fight On!

We'd like your help with one thing if you don't mind???  I believe I have most of the pictures together of everyone wearing the Team Riley shirts but, if you haven't sent me your picture could you?  If you've already sent it I have it (yes, even if you sent it months ago)!  Thank you!

We hope you have a wonderful weekend wherever you are!
Fight On!
Dave, Megan, Logan, Mason and Courageous Riley

Thursday, December 5, 2013

CI Surgery is a Go! Happy December!

It's definitely December in Southern California now!  I mean it was a whopping 40 degrees this morning when I dropped Logan off at school.  And yes, I realize that is warm to some but, we are freezing!!!

Yesterday marked 8 months since we came home with Miss Riley.  Sometimes it is hard to even remember being inpatient and life without a mini hospital room in our home.  And really the last 8 months have flown by!  Each day that we have Riley home is truly a blessing.

Tuesday we had a follow up appointment with neurology.  Always an appointment that keeps my stomach in knots for hours before we get there.  And it's not that I don't like the neurologists, the team we are working with now is wonderful, it's that I always fear being sent across the street.
We were happy to report that Riley had been seizure free for 5 days.  I really hate even writing that and I don't dare say that out loud because usually if I do it leads to her having one.  We discussed the titration of the ACTH, Riley is doing well as she comes off of it which is good.  It will be completed on December 17th.
And then I had to ask the question I was fearing the whole entire day........  Would they clear Riley for her Cochlear Implant surgery??????  I seriously held by breathe waiting for the answer and was happy to hear them say "yeah no problem".  Words I was hoping to hear but, you just never know.

Riley had a blood draw this morning.  Second attempt as yesterday didn't go so well.  Riley is either really fighting it when the needle goes in or her veins are just that hard to get to!  Once we get the results from the blood work we'll know what the doctors want to do with her Depakote dose.  It's possible that they may lower it a bit.  At least we hope.

I also talked to them about the number of meds Riley is on.  Riley's sleepiness the past few weeks has been very hard for us to watch.  It's not the way we want her to be.  It's inevitable that Riley will be on some seizure med for the rest of her life and that it will probably need to be adjusted here and there, we just don't want her over medicated if it's not needed.  On the flip side we also don't want her under medicated because seizure activity in any capacity just isn't really good at all.  So with time and monitoring I hope we can find a good mixture of meds or 1 that work for Riley.  We are happy though that we are working with doctors that believe in trying new things and want to limit the number of meds Riley is on as whole. 

We also have a new date for the CI surgery.  And it's like someone intervened to calm my fears about having the surgery done so close to Christmas.  I was really starting to second guess my decision.  But, the anesthesiologist will be out of town the week of Christmas so they'll be doing the surgery on Friday December 20th!!!  I am waiting for a call back from Doctor Friedman as I have a few questions that Riley's neurologist's want me to address but, for now, I think it is safe to say we are good to go!  Finally.......

We're starting to get in to the Christmas spirit.  Our outside lights are up.  Our Elf returned yesterday and we'll get our tree this weekend.
Protesting pictures on our way to PT
Elfy in action
Our new obnoxious blow up decoration courtesy of Grammie & Pa Doug

We hope you all had a wonderful Thanksgiving.  Once we relaxed and really made a conscious decision to enjoy the day we did.

Mason checking out Luke!

Attempting a group pic with Uncle Brad

Dave carving the Turkey
Turkey Day nap
Grammie at the "kids" table!
Happy Cousins!

Thanks for checking in on us! 

Fight On!

Dave, Megan, Logan, Mason and Courageous Riley