Home!

It's a toss up between Dave and Riley on who was happier to get home yesterday.  Because Dave is an all around amazing daddy and husband he was staying overnight with Riley while we were in the hospital. (something that I just couldn't do this time)  We didn't follow our usual routine where we switch off every night and instead I was home at night with the boys and spent the days at the hospital with Dave and Riley. This trip was much more hectic then usual and as Dave said the days started at 5am and often didn't end until 11 pm or later.  It was exhausting.

The days were crazier then normal because we were switching over all of Riley's meds to Keto friendly, keeping track of her feeds and learning all about the Keto Diet!  Each day we had meetings with the doctors, pharmacist, nutritionist, neuro psych and case manager.  When one would leave the other would come in.

Along with the education that we were getting Riley was also rarely left alone.  Her days started with a blood draw at 5 am and the pokes never seemed to stop.  Her glucose was measured every 4 hours and her urine was tested as well which meant more frequent diaper changes.  Riley really is amazingly strong.  She's been through so much and yet pushes through whatever is thrown at her. 

Dave did catch a picture 2 mornings in a row after her blood draw that summed up how she really felt about the blood draws and pokes!

  (Hopefully, I don't offend anyone by posting this.  If we didn't laugh occasionally we'd go insane and Riley naturally did this twice!)

For now, we wait.  We wait to see if the Keto Diet is going to help make a difference for Riley's seizures.  We were a bit worried when the seizures were increasing while we were inpatient but we think it may have had to do with a drop in her valporic acid levels (Depakote).  Because of the drop she was given an IV boost before we left the hospital yesterday.

We need to give Riley's body time to adjust to the diet, for her ketones to get a bit higher and then we will be able to tell what our next steps will be.

We don't have to decide on any further actions until we make it through the next few weeks and to our follow up in the Keto Clinic on August 14th.

I know that the talk of Hemispherectomy has many concerned.   While it is not something that we want to put Riley through we are confident that if that is the path that we need to go down it will only be for Riley's best interest.  And to improve Riley's quality of life.  It will not be a decision that is made hastily and will take a team of Neurologists and Neurosurgeons to determine if it is something that Riley could benefit from.  While there are many risks associated with the procedure there are also many benefits.  We won't know for a few weeks whether or not this option is still on the table. 

Riley will continue on all of her same meds for now.  We'll begin to wean her off of the Sabril in August.  Because of the severity of the Keto Diet no other changes were made to her meds while we were in the hospital.  Once we wean off of the Sabril and hopefully Phenobarbital shortly thereafter, Riley will start on another seizure med.  Again, this will take time though.  But, there is a plan in place.

We've learned through the last year and a half that our patience will continually be tested.  It's not something you ever get used to but, keeping the faith and being hopeful about the future makes it all much easier to bear. 

So now we're easing back in to therapies and doctor appointments.  We're also looking forward to continuing to enjoy summer and our family time before Logan and Mason head back to school in a month.  Together, like always, we'll be okay.  And we'll continue to Fight On!

Thank you for all of your love, prayers, good thoughts, messages, texts and phone calls.  We couldn't get through the really rough days without all of you!

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

Day 2. Happy surprises, serious discussions and we wait...

Day 2 is almost over and I am emotionally exhausted.

We checked in yesterday morning after an explosive diaper 2 seconds after I posted this happy picture on IG.   

It took gloves and an entire pack of wipes to clean Riley off before we could head in to the hospital!  At least we got a good laugh out of the situation.  Riley was definitely showing us her displeasure about having to go inpatient!

We settled in and Riley was hooked up to the continuous monitoring.  We met with Dr. Tran and the rest of the Keto Team.  They already had Riley's formula ready to go for her 1pm feed so they started her pretty immediately on the 1/2 and 1/2 mixture with her old formula and the new concoction.

For the most part, aside from the million questions, yesterday was a pretty smooth sailing day.

This morning of course was different.

I left to go meet my mom and the boys downstairs when Dr. Tran came  in.  Riley's IS are still there (which we knew) and they are actually progressing (*$*@&#*).  She went over a few things with Dave and promised to come back this afternoon to talk to both of us.

While standing outside our room about a half an hour before I noticed Mike Trout (from the Angels) and a few other players visiting patient rooms.  Trout is Logan's idol.  He loves him and wears the silly Trout hat he got at a game all the time.  So I called my mom and told her to hurry.  It was my mission to get Logan to meet him!  And it was a nice distraction from the stuff happening in the hospital.

The team escorting them around let me know they were headed to the 4th floor playroom so after I met my mom and the boys we headed to the 4th floor.  As the elevator opened the entire group was heading in to the elevator to leave.  The nice lady I met earlier had them get out of the elevator to meet Logan and Mason.  What amazing young men.  Not annoyed, put out at all.  Genuinely sweet and they made Logan's day!  I'm sure these PR trips can be tiresome and yet they posed enthusiastically for a picture with Logan, my mom and Mason.  Logan didn't quite realize who it was until I told him when they were finishing up the picture.  He turned beet red when he realized who he'd met.  Highlight of Logan's day and mine.  Class act all of them!

The boys visited with Riley and we were able to take them to lunch in the cafeteria.  After they left we had a teaching session on how to make Riley's new formula, waited around for Dr. Tran and tried to keep Riley comfy.

We met with Dr. Tran this afternoon.  She reiterated what she had told Dave earlier and we dove in to a long discussion about the future.  At this moment I am numb.  I've had a good long cry on the way home and yet I am at peace.  Does that even make sense?

We're working Riley in to the Ketogenic Diet.  So far, so good.  However what if this doesn't work?  We now know (as I suspected before) that the Sabril IS NOT working.  It takes time for the Keto Diet to really work so for now we are playing the waiting game.  It could take up to 3 months.  But, what if?  What if this doesn't work?  What if Riley requires something more?

We'll be closely monitoring the seizures for the next few weeks as well as heading for an MRI and PET scan in preparation for a possible hemispherectomy. 

What is a hemispherectomy?

I still don't know how I feel about this.  This is all BRAND NEW to me.  While we hope and pray the Keto Diet works I now wonder what benefits a hemispherectomy could have for Riley.  It's also amazing to me how the human brain works.  

Could this be something that helps Riley really thrive long term?  To go from touching and grasping objects to lifting and moving them?  As Dr. Tran explained to us and as simple of an explanation I can give to you is that right now Riley's damaged part of her brain is hindering the healthier parts (aside from the obvious issues the seizures cause as well).  So if by removing the dead part will Riley not have to travel up the 5 across to the 101 and back to the 5 to get to San Francisco?  Will she be able to do something by just traveling up the 5? Will the seizures happening in one part of her brain not transfer to the other side (healthier side)? That's pretty much the comparison we were given.  It's a ton to take in and think about.  But, it's brain surgery.  Brain surgery.

 

We talked in depth to Dr. Tran and I know she has Riley's best interest in mind.  I know she's on the same page as we are in regards to improving Riley's quality of life.  I know she knows that we are going to give Riley EVERY opportunity to continue to write this story and do it on her terms.  For the first time in a long time I feel like we are working with a doctor who sees the potential we see or at least knows we see it and that we are going to help Riley to build on it.  She understands our determination and is as committed to minimizing and/or getting rid of the seizures as we are.  That is her job but, she is also in my opinion not going to option dope Riley up and see what happens first.  Now this is also one of the last cards that can be played for Riley's seizures.  So what if?  

So my feelings are all mommy feelings.  I hurt for Riley.  I hate that we even have to discuss or consider something like this.  I hate that she is being poked and prodded and having to stay in the hospital when she should be home where her family is.  And for the first time in a long long time I am sad and a bit confused.  Do I ask you all to pray for the surgery?  For the diet to work?  For new meds to work?  For the diet plus meds plus surgery to work?  Right now we just don't know what the best answer or scenario is for Riley.

So for today we are taking all of this information in and regrouping in the morning.  We'll spend another day in the hospital as they monitor how Riley does with the Keto Diet.  And then hopefully home on Thursday to closely watch Riley.

As I told Dr. Tran, Riley is still making progress with these awful seizures.  If we can get rid of them what is her potential?  So many questions today.  So many questions that will not be answered any time soon.

For now, we continue to take this all one day at a time, like we always have.  We believe in Riley.  Have faith in the team that is working to get rid of these seizures and have hope in the future.  Riley is not a typical patient in any way shape or form.  She's our special little miss and we'll figure this out one way or another. Always in Riley's best interest.  Always fighting for the little girl that we love so, so much.

Fight On!

Love,

Dave, Megan, Logan, Mason and of course COURAGEOUS Riley!

Summertime, patience and the 2014 CHOC Walk

We're definitely in the middle of summer around here!  Most of our afternoons are filled with swimming and backyard time and the weekends are spent basically living in the pool and around the bbq!  We've learned to embrace the fact that we don't get the chance to go too far from home.  And we have an amazing family and group of friends that join us on the weekends to "hang out".  Logan is now a little fish swimming everywhere in the pool and begging to not get out!

We've also been busy with birthday parties, get togethers and 4th of July.

We're still in limbo mode as far as when we will head inpatient to get going on the keto diet.  We'll either be heading to CHOC 7/21 or 8/18.  We are pushing for 7/21.  It's SO SO hard waiting.  Especially since Riley is still having the "S" words daily.  In fact on 4th of July she had a pretty bad one at our framily gathering.  I suppose we've become semi used to them but in the past whenever she's had a series of "S" words or couldn't stop them we were immediately changing paths and finding a solution.  Patience is not my strong suit!

So we're doing what we can for Riley.  Our parental instinct is telling us that these are much more common when Riley is hot, around strangers or away from the comfort of her own home.  It just seems that any of these situations can exacerbate her "S" words.  So we wait and are still hoping and praying that the Ketogenic Diet is what makes a difference for Riley.

In the meantime Riley is working hard!  She is amazing us in therapy and continues to show us that persistence and patience are key when it comes to Riley.  We caught her on video the other day showing us what she could do while in the stander.

Riley playing with her piano

Riley continues to work on new things in PT.

 Spending more time on her stomach.

 Today she was having an "on" day with her visual therapist and was tracking a ton.  She even wore a  "patch" on her strong eye to help strengthen her weak eye.

It amazes us daily what Riley is able to do and when she does something new, no matter how big or how small, we celebrate.  She's making this progress while waiting to take care of the "S" words and being heavily medicated.  Riley is a mighty fighter and gives us strength on days when we feel like we've had enough.  Just one snuggle session with Riley can cure anything!

We are also happy to announce that we will be participating in the 2014 CHOC Walk.  Last year our little team came in 5th place overall and Pa Doug was 2nd place overall for individual participants.  Made me super happy especially since we joined in late August and had no idea what we were doing!

Well now we're veterans!  Haha.  Not really but, we know what to expect.  So, will you join us?  Whether you are in the So Cal area and can join us by walking on Sunday October 12th or live elsewhere and want to help support our team.  We will be changing things up a bit and doing some creative fundraising ideas in the next month or so.  I'm still putting everything together and will share soon what we're hoping to do.  We'll also have a new fresh batch of "Team Riley" shirts available in the next few weeks.

I'm sure I said it last year but it's worth repeating.  From a very young age my parents taught my brother and me the importance of giving back.  I had always wondered what my "cause" would be and what I would be drawn to.  Through Riley's illness we have been drawn to giving back to CHOC.  Eventually, we hope, that Team Riley can do even more beyond CHOC but it will be a while before any of my crazy ideas get off the ground!

CHOC and the PICU teamed saved Riley's life.  The feelings of gratitude we have for the care Riley received are hard to verbalize.  To this day, as you know, most of our doctors are through CHOC and we are frequent visitors to the hospital.  We feel "at home" at CHOC.  Just one visit to another hospital and we are reminded of why we are so thankful to live near CHOC.  Shoot the valet guys even know me by name and are always there to greet us no matter if we're coming for an appointment or for a short stay.

To join us in walking you can click the link below and it will take you to the Team Riley page.  The minimum amount that needs to be raised in order to walk is $50 by October 12th.  The money can be raised through donations or paid directly to CHOC the day of.  We hope to see you there!
Join the Team Riley CHOC Walk Team!

We'll have our individual pages set up in the next few days.  I will include the links next time.  We'll all be walking in support of this great hospital and hope that Riley will be able to join us this year!  (Last year, much to our disappointment, Riley was inpatient and unable to walk).

Fight On!

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