Friday, January 9, 2015

Goodbye 2014!

2014.  What a year it was.  In many ways, for many reasons, we were ready to say goodbye to this past year.  And yet, while it has had it's ups and downs, it really hasn't been that bad.

More often then not I feel like I tend to always focus on the bad that has gone on and don't celebrate the good.  One of my hopes for 2015 is that we as a family continue to count our blessings and take time to celebrate the good that is all around us.  I also hope to return to blogging more consistently.  Attempting to update after weeks have gone by is hard!

 The last few days of the year were filled with many different emotions.  Getting past the 2 year "anniversary" of Riley's illness was a significant  milestone.  I hope that as the years go by the day doesn't hurt as much as it does.  Realistically, I know that is probably not possible.

Last week, Riley's new wheels were delivered.  Bittersweet.  While we don't really need the wheelchair right now (thanks to the awesome adaptive stroller) we needed to have it available IF we decide to send Riley to school after she turns 3 (in 2 short months).  We start the IEP process for real next week! Eeek!
Thrilled to be fitted for her wheelchair!  Love the little personality that comes out every once and a while!  She's my daughter!
 We were able to get the chair covered 100% by insurance.  As many other parents of children with special needs know the insurance game can be one you play all year long. Trust me January is a sucky month when it all resets!  We had reached our deductible.  Met our OOP max and thanks to a great company that we worked with to get the stander we were able to squeeze in the wheelchair with only a day to spare in our insurance plan year.  After looking at the invoice last week (around $13k) we knew we made the right decision no matter how hard of a decision it was to make.
Bling bling!  Hot pink with silver sparkles!
 I still remember laughing at the therapists at Healthbridge when they suggested a wheelchair for Riley.  My hope is that one day she will get out of that chair and take her first precious steps.  And we'll be beside Riley cheering her on no matter how many years it takes.

We're still battling the "S" words.  My hatred of them increases each day.  I find that we are constantly analyzing them.  How many?  How long?  How severe?  What time of day?  And that can be exhausting.  We won't accept that "S" words are supposed to be a part of Riley's daily life.  There are many other medicines and treatment options that exist.  And so my hope is that 2015 is the year that we can find something that works for Riley.  As it stands now she's doing really well coming off of the Depakote and is more alert and more active.  She smiles more and more everyday.  She's more present.  We're extremely thankful for that.

Today I finally hit make payment and submitted a request for a second opinion from the Cleveland Clinic.  My plan is that we get the report in time for our next neurology appointment and we can come in with ideas and open up a dialogue with Riley's neurologist's that tells them we want more aggressive treatment.  If this doesn't happen we may need to part ways.  The nightmares I have been having about Riley's seizures and the hours I have spent researching various meds, options etc. lead me to believe we as Riley's advocates need to be more aggressive ourselves (not mean aggressive, just push for more for Riley).  I think that makes sense?  We're also starting to explore alternative medicines (think CBD).  Something HAS to work and there HAS to be a combo just right for Riley.

We hit a bit of a bump in the road this week when Logan, Dave and I got the dreaded flu.  I'm hoping that by getting this out of the way early in 2015 we will be healthy for the rest of the year.  We've upped Riley's breathing treatments, avoided her as much as possible and disinfected the house to hopefully prevent Riley and Mason from getting sick.  It was awful and the sickest I've been in years.  Thankfully, Logan seemed to bounce back faster then either Dave or me.  We really don't want to start out the New Year in the hospital with Riley!

I thought it would be neat to do a little monthly recap of what the Hopper Household was up to in 2014.  Looking back it is amazing how far we've all come.

 New Year's Eve 2013
First hospital stay of 2014.  Still very swollen from ACTH. Sporting her new Cochlear Implant!

February- celebrating Mia's birthday
Riley & Mason turn 2!!!
 March- Mason starts preschool
Jog-a-thon at Logan and Mason's school
 Neurology visit-started talking about Ketogenic Diet

Home after successful granulation removal
April Riley's new stander
Therapy with Mason
April- Priceless bunny picture
Easter 2014 McEachern cousins
 Love from Riley's bff Mia
May- celebrating a successful 1st CHOC Walk
 Logan and Mason supporting Riley on the day of her EEG
June- Logan graduates from Kindergarten
 Checking in for another hospital stay
Sweet present from our new friends in WI
EEG time
June- Luke turns 1
Eye dilation due to Sabril
Practicing RAOK's
OC Fair

The Angels come to CHOC 
July- pictures with McEachern cousins
August- Uncle Brad's birthday
Celebrating Grammie & Pa Doug's 40th Anniversary
September- Mason starts preschool again 2 days a week
A truly priceless gift.  The adaptive stroller comes home with mommy from WI!
October- Logan turns 6!
Cal Poly Pumpkin patch 
CHOC Walk 2014
ALS Walk in support of Shaun!

November- Thanksgiving at Grammie and Pa Doug's
December- Let's get our tree
Disney on Ice

Twin love

 Thank you to each and every one of you for continuing to be on this journey with us.  Our wish as a family to all of you is that 2015 is your year.  That the New Year brings you health, happiness and precious time with those you love!

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

Friday, October 17, 2014

Celebrating the positives

You would be surprised at the number of posts I have waiting to be shared that I never hit the publish button on.

Not sure if it's because I didn't like what I had written or what my reasoning was.

We've been super busy.  School started for the boys.  USC football returned!  Riley has had many therapy and doctors appointments.  The boys were sick.  Riley has had 2 UTI's.  I had an amazing opportunity to travel to WI via Chicago to pick up the adaptive stroller and meet Patrick's amazing mom.  We celebrated Pa Doug's birthday.  Logan turned 6!  I still can hardly believe that one.  We had a wonderful party with family and friends and corn dogs! We've been paired with a runner for Riley through the organization IR4. (Look them up on facebook and sign up to get a runner!) We participated in the CHOC Walk and spent the day before at Disneyland with the boys.  I'm sure I'm forgetting something!

It really feels like we have been on the go constantly.  Which is a good thing.  We're trying to appreciate each day.  Appreciate the opportunities we have to celebrate life.  Focusing as much on the positives as we can.  A few things have happened over the last few weeks that have knocked that sentiment back in front of us and reminded us that at the end of the day we do have a lot to be thankful for.

Riley is doing okay.  Not great, not bad.  Okay.

While we really wish that the seizures would just go away, we also know that unfortunately they never will.  They can be controlled with the right med combo but Riley's risk for seizures will always be there.  So we're continuing to try and find what works for Riley.

Our hope is that we are getting closer to finding something that will keep them at bay.  In fact a couple of weeks ago I was fairly certain we had.  Riley went a couple of days without any seizures or "S" words as we like to call them.

And then her UTI returned.  And so did her seizures.

Riley is amazing though.  We're hearing her voice more and more over her trach.  Because of the UTI's she's shed real tears and cried.  While it sounds mean it was music to my ears.  Hearing our baby girls voice in any capacity is wonderful and rare.  Seeing Riley have real emotion is encouraging.  In fact she hurt her ankle a couple of weeks ago and when she would be picked up she'd pull it in to prevent it from getting hurt.  These are all signs that Riley's brain is telling her what to do.

In therapy Riley is opening her hand and playing with toys.  She's choosing what toys to play with by making decisions with her eyes.  I'm moved to tears weekly while watching Riley work in therapy.  She tries SO hard.  When Riley first got sick I would squeeze her hand 3 times "I love you" is what I was trying to communicate to her.  While she was in her coma I did it all the time.  Wanting her to remember that we loved her no matter what.  Riley is now squeezing our hands in return.  We're proud of every little thing she is doing and look forward to seeing what she'll do next.

We had our follow up neurology appointment yesterday.  An appointment I was dreading.  Like pit in my stomach dread.  We decided after the last appointment that I would no longer attend these appointments alone.  Not only because the last appointment was so upsetting to me but, because it's important for Riley that we are both there to bounce ideas and questions off the doctor.

Over the last 3 months since we started the Ketogenic Diet Riley has lost around 5 lbs.  A fairly significant weight loss for Riley.  I'm looking forward to our GI appointment in a few weeks where they'll weigh her again.  If you recall last time they called her obese.

Riley was on a calorie restricted diet when we started the Keto Diet which is why her keto ratio started at 2:1.  It was increased a bit while we were in the hospital to 2.25:1 but,  we've been hoping they could work to get it closer to 3:1 and ultimately ideally a 4:1 ratio.  Everything we've read has said that there is more success the higher the ratio is.  The goal is to get her in to a high level of ketosis.  So we left the appointment with a new recipe a 2.75:1 ratio.  Because of her weight loss they were able to make changes and add in more fat.  We'll be in constant contact with the nutritionist (who by the way has been my savior when it's come to my zillion questions) and track Riley's weight over the next month.  Our hope is that she tolerates this change and we can then bump her up to the 3:1 ratio.

We will also be weaning Riley off of one of her meds.  Depakote.  Since starting Depakote Riley hasn't been able to maintain a level in her system that you need for the med to work.  For example her last blood draw had her Depakote level at 22.  A therapeutic level is in the 60's.  I think the only time her level has been decent was when she had a IV of Depakote before leaving one of her inpatient stays.  So yay for one less med!

We discussed the hemesphrectomy, where we go from here, Riley's future etc.  And for the first time in a long long time I am at peace with how we are proceeding.  There is a plan.  A loose plan that Riley is in charge of ultimately.

We're going to continue to watch Riley.  We're also going to be trying to avoid the hospital as much as we can over the next few months.  Cold/flu season is not a time you want to be in the hospital and given Riley's susceptibility to illness we really don't want her there.  Due to this her continuous monitoring won't take place again until the Spring.

We hope you have all been doing well!  I have so much more to share and am looking forward to telling you more about my trip to Chicago and the CHOC Walk.  2 highlights of the last couple of months.

Thanks for your continued thoughts and prayers.  We feel them daily.

Fight On!

Dave, Megan, Logan, Mason, Courageous Riley & our fabulous CHOC Walkers!

Friday, August 22, 2014

Why I still hate Neurology appointments...

Last Friday I sat down to write an update.  Read it.  Edited it.  And then walked away.  I know now that it was for the best as I needed a few more days to calm down from last Thursday's neurology appointment.  I did get a chuckle on Monday though when I opened my "TimeHop" app and a year ago I posted on Facebook about how much I hated neurology appointments.  I guess not much has changed since then.

Wednesday evening, the night before the appointment, I was holding Riley and Logan stopped to give her a kiss and say hello.  He then looked at me and asked "When is sissy going to get better mom?  When can she get up and play with us?"  A very tough question from a smart kid and I didn't want my answer to be misleading or give him a false sense of what the future will bring.  So I simply answered that I did not know.  He went on his way, back to his show I am sure, and I broke down and cried. 

We have no idea what the future has in store for Riley.  But, we know that we have her here with us.  We also know that she's already beating the odds and doing new things each day.  We're thankful we have another set of eyes (our nursing staff) to see her progress as well.  We will never stop fighting for Riley or celebrating her accomplishments.  No matter what we're told is supposed to be.  Riley is her own special little girl who I know is going to do things that many don't think she will be able to.

I also want to say that I hope my (really ours as a family) positive approach to Riley's journey, my desire to seek out more for her and to never give up doesn't come across as me being naive as to what we are faced with.  We live the reality day in and day out.  From day 1 we decided that to get through this together, as a family, we needed to be positive, hopeful and keep the faith.  It's what gets us through both the good and the bad days.  I'm saying this because after Riley's neurology appointment I felt like I was being misunderstood.  I left feeling like I had the wind knocked out of me and I am assuming it is because we are so positive, we are so hopeful and we aren't willing to give up.  It's an approach that has been met with some resistance over the last year and a half in the medical community.  Some doctors see things as very clinical.  Some are more patient oriented and deal with what's in front of them.  You know the actual patient.  It's a real joy having to navigate this with all of the personalities that come in to play.

I started to like neurology appointments before we had to switch to a new doctor.  Maybe it was because Dr. G (and yes I am going back to anonymity for personal reasons when referring to Riley's care team) had been with us from the beginning.  And when I say beginning I mean day #1.  He celebrated right along with me when I would praise Riley's newest "thing".  He about fell over when Riley smiled at him before he left the room the last appointment we had with him.  I've wondered this last week if it was because he was able to see how far she'd come and he saw a bit of the hope we did?  Am I over thinking this?  Maybe.

As far as our little miss, she's doing okay.  We met again with the Ketogenic Team to discuss how Riley was tolerating the diet and where to go from here.  Riley is still having the seizures.  They are getting less severe and while that is a good thing I still wish they would stop.  I know I sound like a broken record.

Because of the limited number of calories that Riley is on her recipe is only at a 2:1 ratio.  Max and most ideal is 4:1.  Because Riley has lost some weight, +/- 2lbs we were able to tweak her recipe a little and add more MCT oil.  Her ketones weren't as high the last week and I wondered if it was what was causing her to have a higher # of seizures.  It's possible.  So we're now at a 2.25:1 ratio with Riley's recipe and we're going to make a few other changes in hopes that we can maximize ketosis.  We're changing the brand of a few over the counter meds she's on and switching toothpaste.  Every little thing counts for Riley.  We'll follow back up with Neurology in 2 months.  Riley is stable though and we're still hopeful that this will be what works for her.

I came to the appointment with a list of questions.  And I had actually written them down.  That's how important they were to me.  The appointment went south when the doctor opened up her Ipad and showed me Riley's MRI from August 2013.  The one we had done to prepare Riley for her CI surgery.  I have the CD of the MRI on my desk.  I open the images occasionally.  Google.  Compare.  I am VERY familiar with what Riley's MRI looks like.  And I am not a fan of looking at it.

The demeanor of the doctor.  The way she approached showing me the MRI, like I'd never seen it before was awful.  I'm not unaware of what the MRI shows.  I know Riley faces a lifetime of challenges.  I know it's not going to be easy.  But, we're not giving up.  At this point during the appointment I felt like Riley had become an image and not a real person to her doctor.  This was an MRI that is 1 year old.  Do you know how far Riley has come in just 1 year?

She also used the term "risk, benefit, reward".  A term that the first ER doctor, who decided not to do the spinal tap on Riley said the first day in the ER.  A term that makes us both sick.  She repeated it so many times that I had to ask her to move on.  My definition of risk, benefit, reward and that of the doctors are very different.  I also wonder at what point in medical school this term is taught.  Yes, me thinking out loud again.  Is it when you just don't know what the course of action really should be or when you don't want to have to make a difficult call regarding a case?  Again, a term we don't like because of the past and it definitely stung a bit.  I am just thankful Dave wasn't able to be at the appointment as he is probably more sensitive to this term then I am.

So that's why the appointment was bad.  That's why I waited a week to return to the blog and update all of you.  There is a bit more to it but, I think after careful thought I am going to hold back on sharing it all.  For now.  I'm also going to think about making our little space on the interwebs private.  I love writing.  I love sharing.  I love that others who are praying and thinking of Riley and our little family are able to share as well.  I don't like feeling so vulnerable.  I don't like feeling like my venting and writing has been read out of context.  So we'll see.  Again something I need some time to think about.

Other then that we are doing fine.  It's HOT though!  We've enjoyed time with family and friends over the last few weeks.  Logan got to finally go to Raging Waters with Dave, Uncle Scott and Tobin and we celebrated our dear friend miss Addison's 1st birthday last weekend.

It's our last weekend before school starts.  We'll be spending it in the pool and celebrating Grammie & Pa Doug's 40th Anniversary on Sunday.

I'm excited for the new school year.  Excited for what the boys are going to learn.  Excited for things to come for Riley.  And, almost giddy to get back in to a routine.  And really we're only 8 days away from another college football season!  That always makes me happy.

Since school is starting I will most likely pull back on updating on here as often as I have been.  And because I can have a bit more control of my audience I'll be using Riley's Facebook Page "Team Riley"  for more frequent updates.  You're welcome to join our page!

We're also a little less then 2 months away from the 2014 CHOC Walk.  I've included the link again if you'd like to join us!
CHOC Walk 2014

And of course as always Fight On!

Dave, Megan, Logan, Mason and Courageous Riley