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!

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

 

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!

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

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!

Love,

Dave, Megan, Logan, Mason & Courageous Riley!

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

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

Silly

 

Dave carving the Turkey

 

Turkey Day nap

 

Grammie at the "kids" table!

 

Happy Cousins!

 

Thanks for checking in on us! 

Fight On!

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

Attitude of Gratitude

As we all sit back and take time to reflect on what we're thankful for this year during this week of Thanksgiving, I am sure we all can come up with a list of at least a few things we're thankful for. 

I've written this post multiple times.  Put my thoughts on the page and then just didn't have the desire to hit publish.  It wasn't until late last night, when I finally sat down to open our mail that I read a card from someone very close to us that brought everything back in to perspective.  Even though the holidays are going to be hard this year it is still okay for us to be thankful and really, we have a lot to be thankful for.

When I sat down to try and come up with my list I realized that some of the things I am thankful for this year are all a direct result of Riley getting sick.  And I wonder how crazy that sounds to someone who hasn't walked in our shoes over the last 11 months.  I mean I am not thankful for many things as well.  Not thankful for what Riley's illness has done to her body, to her mind, to her soul.  Not thankful for the way our lives have been turned upside down.  But, I am still thankful.....

Riley's illness has shaken every bit of me.  Twisted my thinking, realigned my priorities, made me really look deep in to who I am as a wife, mother, sister, aunt, friend and person.  And I am finally okay with that.  In fact I am thankful.

I've wondered often over the last week what my list would have looked like if Riley hadn't been sick.  Where we would be in life.  And then the reality that I can't change the past or rewrite
it set in. 

I'm trying very hard to stay positive and make it to the end of 2013.  Each day I feel like we are holding our breathe waiting for something to go wrong.  And, for many reasons I didn't even want to think about Thanksgiving and the actual day because my fear was so high that we wouldn't be together as a family.  And that would have devastated me.

As we watched Logan's Thanksgiving program last week "Attitude of Gratitude" I was teary.  50 or so K and 1st graders really got to me and I knew that it would be my attitude that would get me through the next few weeks.  Who knew the little people in our lives would be another reminder to me that it's all really going to be okay.

Riley is doing better this week.  Last week I was certain we'd be heading back to the ER at any moment.  She had a few break through seizures that while short they were concerning.  Thankfully, the levels of the medications in her system are where they should be now.  While still sleepy Riley is waking up more and more each day.  She was even awake for most of PT yesterday morning and participating!  I recorded a short video of Riley rolling on a wedge.
Riley Rolling

Yesterday, the GI department called and her endoscopy and biopsies all came back normal.  Just hearing someone say normal as it relates to Riley was a huge relief.  We're still waiting for the PH Probe results but, we're fairly certain that those will be normal as well.  So maybe when we head back to GI doctor in a couple weeks Riley will be able to be weaned off of some of her GI meds????  And most of all we're hoping to hear that we can finally table the fundoplication procedure for good.

Riley also had an ENT appointment yesterday with the new doctor we've decided to go with. Works in the same office as the old doctor if you recall.  I had Dave go with Riley because I really wanted him to meet Dr. Ho.  And, Dave left feeling nothing but positivity from him.  Encouragement about the importance of having the CI surgery done and belief that USC and the doctor doing the surgery were an excellent choice.  Quite a bit different from the feelings we got from Riley's old ENT.  After the first of the year and after Riley has had some time to heal from the CI surgery she'll have a bronchoscopy and laryngoscopy done.

I am looking forward to the next few days with family and friends.  And to celebrating a Trojan win on Saturday:).  We sincerely hope you all have a wonderful Thanksgiving with your family and friends.  Thank you for sticking by our side and continuing to pray for our family and for sending us all of the good thoughts you can. 

I know that right now more then ever I am truly thankful for my family; Dave who "gets" me and is my rock through thick and thin, my 3 kiddos (even in those moments when I want to ship the boys off to Grandma's house),  our families (every single one of you), our friends that are more like family, the roof over our head, the food on our table, the nurses that care for Riley in our home day in and day out and the fact that I have another day with my family of 5.  And we're thankful for all of you.  For all of that we are truly blessed. And thankful.  And today and always it's okay to feel this way.


Happy Thanksgiving
and
Fight On!

Love,
Dave, Megan, Logan, Mason and Riley

Mondays update!

It's always nice to be home.  There is just something about the hospital that wears us all out!

Riley is doing okay.  She's still a bit sleepy but, is slowly starting to be awake a bit more.  She's on quite the cocktail of meds; phenobarbital, Depakote and the ACTH.  One of those alone can have sleepy side effects so you can imagine what the 3 together make her feel like!

So what is the plan now??? 
We're back to therapies and appointments. 

Therapy on Friday.  A bit sleepy but, still participating!

We'll have Riley's labs drawn weekly to test for various things. We attempted the first draw this AM at CHOC and it was a bust :( most of Riley's veins have been blown over the last week with all of the needle poking! But, my lifesaver "Gina" from the neuro clinic connected us up with a gentleman that is supposed to be fabulous and comes to the house to draw blood!!!  He'll be coming tomorrow morning and we hope he is able to get enough for this week's labs.  She's being titrated off of the ACTH still.  The last dose is the 2nd week of December.  Riley is free of the IS (infantile spasms).  She's still experiencing the electric type seizures according to when she was taken off of the EEG.  But, these shouldn't cause any further damage. Phew....

Today we were back at CHOC early (545am to be exact) for an endoscopy and ph probe placement.  The endoscopy didn't preliminarily show damage from acid reflux.  The ph probe will stay in for 24 hours and monitor the same thing, acid reflux.  Depending on the results of this test we will then decide if we proceed with a fundoplication (nissin) procedure or not.  I was under the impression that a bronchoscopy was also being done this morning.  The reason why we went to the aerodigestive clinic was to have all three specialties (GI, ENT and Pulmonology) in one place at one time and for ease of coordination.  I guess I missed something in there.  Just another one of those things.  So, I've learned my lesson and need to listen more closely when they call to review things for procedures or perhaps get out a medical dictionary so I know what each procedure entails.  I have a call in to the ENT's office to get the bronchoscopy scheduled ASAP.

All dressed up ready to head to CHOC!

Heading back to have her procedure done.

Riley also has a swallow study coming up and follow up appointments with her various doctors.

We're trying to stay very positive and keep pushing forward with everything that Riley needs to have done.  We're also trying to figure out how to fit everything in before the end of the year.  I realized today that Thanksgiving is next week and may have had a bit of a freak out!

This weekend we were able to spend time with Aunt Becky and Uncle Scott (Happy Birthday Aunt Becky!!!!), attend the fabulous USC Homecoming football game(a mommy/daddy date) and visit with Uncle Mike, Tia T and Mia.  It was a busy but, nice weekend.

 

Some fresh air on Sunday!

Kisses from Mia with crazy Logan in the background.

Kisses for sissy!

 

 

Thank you for your support and messages while we were back at CHOC.  We're becoming very familiar with the 5th floor (neuroscience floor) and figure that will be where we will spend most of our time if we ever need to be inpatient.  The pediatricians that work on the floor are amazing.  Professional, kind and encouraging.  The nurses are the same.  And it's nice that they have gotten to "know" Riley's case.  It makes it easier to not have to go through the entire chain of events that got Riley to where she is today with someone new.  The icing on the cake was a phone call from one of the charge nurses and one of our main nurses while inpatient on Friday just to check on Riley.  Who does that????  It really makes you feel like they really do care for your child and care about what they do. 

While we know this won't be our last hospital stay we hope it will be the last stay for a while!  We've been in and out of the hospital now every 2-3 weeks for the last 3 months.  :(  The valet guys even greet me with a "hello Mrs. Hopper".  That to me really shows that we've been there way too much!
 
Oh and one more thing, if you have a spare prayer or good thought could you send them to the Ross family and Miss Gracie???  I am continually amazed and blown away by the strong faith this family has and I know they'd appreciate it!  They are separated as a family right now while they fight for Miss Grace in Boston.    Keep fighting Gracie doo!!!!
Gracie

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!!!

Hospital Day 3...

Riley is doing okay.  She's very very sleepy.  In fact in the last 10 hours that I have been here she has maybe opened her eyes twice and one of those instances was when they did a finger prick to get more blood for labs. :(

I am really missing those pretty eyes.  But I know she needs to get adjusted to this new med and really if the only side effect she's experiencing is sleepiness then we'll take it.  When she first started the ACTH she was super aggravated (roid ragey).  This is much more peaceful.

They are continuing to wean Riley off of the ACTH.  Yay!  Overnight, Riley did not have any seizure activity and all day today she's been very calm and we haven't had any reports of seizures from the monitor room.  All very very good news.

The goal now is to get the Depakote to a certain level in Riley's system.  Right now they are aiming for a level of 125.  What that means exactly I don't know.  All I know is that before we can go home they need to make sure she is maintaining a certain level of the medication.  So in order to accomplish this they are giving her 2 regular doses a day (which have been adjusted multiple times already) and then they give her IV doses if they test her blood and it's not at the level they want.

For example this morning her Depakote level was at 92.  Down from 96 last night.  So, they gave her an IV dose in addition to her bolus dose.  Her afternoon labs showed her level at 136.  Which was great but.... it was 1 hour after the IV dose.  So, she'll get her regular dose tonight and then have labs again in the AM.

Please send prayers, good thoughts, vibes, whatever you've got that her level is where it is supposed to be in the morning and that she continues to show normal brain activity without seizures.  We are beyond happy that after weeks of hospital stays, worry and med adjustments they may have finally figured out a cocktail so to speak that will help keep the seizures away. 

So now we wait...once the meds are figured out and the doctors feel the seizures are under control, we can GO HOME!  And once we do leave we don't plan on returning as inpatient for a long, long time.  Hey, one can dream!

Thank you for your continued love and support.  It really means the world to our little family.

Fight On!!!

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

Hospital update- new seizures/new medication

   

So we're back in the hospital.  It all started Friday evening when I got a call back from the neurologists office after discussing things that had been concerning us with the wonderful nurse that I've been in constant contact with.  The neurologist felt that the seizures Riley was having were enough of a concern that we needed to head to the ER.

We waited a bit for traffic to die down and for Grammie to get to our house (fighting the same traffic) and then we were on our way.  The nicest part of the evening was that the nurse from the neurologists office had already made the ER aware that we were coming and the nurses and resident had already reviewed Riley's case.... So they were no lengthy waits and no scrutinizing questions.  You know this made us both very happy!

We didn't know at first if they'd keep us or just do a med adjustment and send us home.  It was finally decided that they'd admit us and most likely start the continuous monitoring (we were scheduled to do this for 24-48 hours this week anyway).  Dave and Riley had a pretty uneventful night on Friday and we really were just waiting for labs and doctors.  Made us both wonder if we could've just headed to the hospital in the morning....

Saturday morning they gave the go ahead for the monitoring and we knew we were settling in for another long stay.  We didn't know what was coming though.

What we know now.  The ACTH is working.  Riley isn't having IS (infantile spasms).  We're celebrating this fact.  The next medication they would have tried if the ACTH wasn't working may have had an affect on the limited vision Riley does have.  So for this we're extremely thankful.

Last night around 1am the nurse woke me up to let me know they were giving Riley Ativan  (a pretty high dose).  Riley had 10+ seizures in a row. While sleeping.  I believe the nurse called them tonic/clonic seizures.  I was half asleep when this all happened.  My heart sank when she told me and then the worry set in.  There isn't much to do as a mom at 1am except worry.

So I spent the rest of the night googling and worrying and praying.  I haven't been this scared for Riley in quite awhile.  I mean I worry daily about her future but, sleep at night knowing she's stable. 

Early this morning  Grandpa Hopper met me at CHOC so I could run home and shower and get the boys ready to head to Molly's birthday party.  I was already really bummed that Riley would be missing the party and it was important that I was there with the boys.  We rushed to get ready and get Dave back to the hospital in time for rounds.  We're thankful Dave made it because there was a lot to be told.

They have started Riley on Depakote.  It will help with the specific type of seizures Riley is having. They gave her the first dose through her IV in order to front load her today and have been giving her doses as needed all afternoon all while measuring her levels as the day progressed.  She's also still on the continuous monitoring so they can track exactly how the med is working.  The seizures Riley had today were much more severe and involved. I know now we headed back to the hospital at the right time.  I'm also thankful her second such seizure of the day didn't take place while the boys were with me visiting.  Logan is already SO worried.

For now we wait.  We hope this works and we hunker down again in the hospital.  We knew seizures were inevitable, we knew hospital stays would happen but, we're all pretty exhausted emotionally and physically from everything that has happened in the last few weeks and... We miss Riley.

I know Riley is sick of being inpatient and we're just hoping they get these seizures under control and at a manageable level soon.

I'll leave you with some pics of today.  Tomorrow our niece Molly turns 3!  It's hard to believe.  Happy Birthday Molly Elizabeth!!! We love you. xoxoxo

I'll update more tomorrow.  I'm doing this post from the IPad for the first time as I left my laptop at the hospital and it's not as easy for me to navigate the blogger APP!

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