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!

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

Friday, August 8, 2014

2 weeks- Little to No Change

We're officially 2 + weeks in to the Ketogenic Diet.  I don't think we can really definitively say whether it is working or not.  I was really hoping at this point that we would know.

The positives are that Riley is:
*Tolerating the new formula
*Getting readings of higher ketones in her urine
*Not having any glucose issues
*Appearing to "thin out" some (although this could also be because she is growing)

The not so positives are that Riley is:
*Still having a few (1-3) spasms a day.  Like I said when we first started the Sabril they seem to be less in length and severity. Sounds too familiar to me.
*Seems to be more sleepy.  This is often something that Riley experiences with any new med change.
*Managing her meds has proven to be frustrating with the changes that have been made!  Thankfully, as of this moment I think we're good going forward!

I've tried to not focus on the what ifs.  Tried to put my thoughts about what we would do if x,y,z happens out of my mind but, as the days go on I am finding myself thinking more and more about what if this doesn't work.

So we're continuing to watch and monitor Riley and wait for our appointment with neurology next week on the 14th.  I have a feeling that this will be one of the harder appointments we've had to go to if things don't start to really click with the Keto Diet over the next few days.  

Last week Hannah, our amazing nanny/babysitter was on vacation so I tried to do fun things with the boys each day.  Chuck E Cheese, lunch out together etc.  And, the boys were able to spend some extra time with Grammie and Pa Doug.  First by spending the night in Arcadia (Mason' first time away from home!) on Tuesday and then going to Del Mar with Grammie and Pa Doug Saturday through Monday.  The boys were able to go to the beach, visit with Uncle Brad, Aunt Kara, Molly and Luke, play at the park, make OJ with my parent's wonderful neighbors and Logan even took a ride in the Corvette!  It was nice to have the house quiet for the weekend and we got some more one on one time with Riley.  I know they loved being spoiled by Grammie and Pa Doug!



We had our first ST appointment last week and it went really well!  I really like Riley's new therapist and think she'll be great for Riley.  Yesterday, we had our second ST session and I had to bring the boys so we headed over to the cafeteria to get treats.  It was probably for the best as the boys couldn't keep their hands off of Riley's therapy toys when we returned!  Riley was already doing more then she did the first visit so we're encouraged and hopeful that this will be a positive for Riley in terms of learning to communicate "Riley's way" and eventually starting to work on swallowing because....

Tuesday, we finally made it to Riley's swallow study which has been rescheduled a handful of times for various reasons over the last 6 months!

I have to preface what I am about to say with telling you all that we were fairly certain that Riley would fail this swallow study.  May sound mean but, to be fair to Riley she has not taken anything by mouth in over 18 months.  When she first "got sick" she was eating purees and taking bottles.  I tend to try and educate myself on what to expect before a "new" test so I had done some poking around on the Internet and read through postings on a Facebook page I've joined for mom's with trach babies and knew that a "fail" was not uncommon.  It still stings though.

The ST that helped to administer the test was nice but, unfamiliar with Riley as a whole so I took everything she had to say with that in mind.  If you think you know Riley on paper I can guarantee you don't know Riley.  

I can't really explain what was off about my interaction with her but, when asking for guidelines specific to what Riley's swallow study revealed, so that we could go back to our ST with a plan, she seemed a bit shocked.  I don't know about you but, it just seems logical to me that Riley's ST should know specifically what to work on with her.  For instance Riley did not do well with the barium liquid when presented and aspirated very quickly.  She did better with the mashed avocado but, still had  a delayed choke response.  These study specific things will give us a better idea of what Riley needs to work on.

She also left me with that pit in my stomach when we interact with someone in the medical field for a brief period of time and I can see the doubt in their minds.  The awkward dance they do around what words they are going to choose to use to explain to me what is going on with Riley.  The truth, the facts.  It's what we want and need.  It's how we can best help Riley.  Sugar coating or trying to make me feel better about Riley's situation, while gingerly trying to "explain" Riley, comes off like I am stupid.  I'm not.  We're not.  So I left feeling rather defeated from our whole experience which hasn't happened in a long time.

So we continue to wait and pray and hope that we see some positive changes as far as Riley's seizures over the weekend.  Even with everything going on Riley is still amazing us (like she always does).  She was awake all through PT today and did some cool new moves.

Wednesday afternoon she showed off her skills with her passy muir valve (a valve placed over the trach so Riley can make sounds) and had my mom, Dave and me in tears.  Her coos were like a 4-5 month old that has just discovered their voice.  I posted a longer video on FB but, figured I'd post the shorter video here.

The boys are in the background and the 45 seconds I recorded pretty much sum up what life is like in the Hopper Household!
Riley making sounds!

We hope you all have a fantastic weekend and as always Fight On!

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

Friday, July 25, 2014

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

Tuesday, July 22, 2014

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. 


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!

Thursday, July 10, 2014

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

Friday, June 27, 2014

Ketogenic Diet and an Amazing Gift

Yesterday, after waiting a few weeks for the appointment, we finally met with the Ketogenic Diet "Team" at CHOC.  We had already decided this was the route we wanted to go and  had labs taken while we were inpatient a few weeks ago just so we'd be a few steps ahead in the process.

I've mentioned that I'm not 100% sold on the Sabril.  Perhaps it's because when Riley was on the ACTH her IS's went away, completely.  On the Sabril she'll still have a few a day but, they are less frequent, not as lengthy and not as severe.  So I suppose this is a small victory in the grand scheme of things but, long term, we need a better solution for these awful things.



When I say we met with a "Team", I'm not kidding.  I was expecting a few people in the room.  When the door opened  in walked a pharmacist, dietitian, nutritionist, social worker, psychologist, therapist and NP.  I only recognized one so this was a new audience to talk to about Riley.  I also always feel a bit of anxiety when there are so many people grilling me with questions.  I even commented to them that it reminded me of the days in the PICU during morning rounds.

After a series of questions the NP looked Riley over and Riley was a rockstar.  We had taken her "ear" off because Riley is now startling to loud noises. We think this is HUGE for Riley as it must mean she's hearing the loud sound and knowing she's supposed to have a startle reaction.  She has only started doing this recently and when we both had the same jumpy reaction to a sound in the neuro waiting room yesterday it made me smile.  Perhaps her sense to sound really is reconnecting?  Riley followed the NP's light when she tracked her eyes, reacted to her when she tested her reflexes and moved her head towards the NP when asked.  This was a good exam and make me think Riley liked her.  If Riley doesn't like someone examining her she basically plays possum.  Riley is much smarter and aware of her surroundings then most give her credit for.

After our exam and discussions Riley's doctor, Dr. Tran, came in to discuss moving forward.  I had a list of questions in my head and was trying to make sure I got them all in before Dr. Tran was done!  I feel confident that we did address everything and that we have a plan in place.  We're on the same page in regards to the number of meds Riley is on and she knows what our expectations are as Riley's parents.

Riley is approved for the Keto Diet (almost).  We're waiting on 2 more labs (see why it was so great to get these going early) and as long as those look good we'll prepare to go inpatient to switch over to the Keto Diet.

We're looking at a date in July and a date in August and we'll be back inpatient for 4 or 5 days as they figure out the right formula for Riley and switch her meds to ones that are "keto" friendly.

I'm actually excited about this hospital stay and cautiously optimistic about what the keto diet can do for Riley long term.  We'll let you know once they give us the final go ahead which I am hoping will be in the next couple weeks.

I also want to share with you all  ( sorry for the repeat if you're my fb friend) something so wonderful that is being given to Riley.  And a bit about the family that is making this possible.

One of the things I least expected when Riley got sick was to be so touched by others who had medically fragile children and their stories.  I also never expected to be so overwhelmed with the generosity, concern, care and support that we as a family have received.  To this day  we'll receive a gift or a message and it touches me the same way it did day 1 of Riley's journey.

I "met" Patrick's mom shortly before Riley was to start ACTH.  I had known Patrick's Aunt for a few years and she put us in touch because I had so many questions and concerns about the ACTH.  Stef had lost her angel baby Patrick and was still so open to replying to my emails and giving me information that I needed to be prepared.  I think she gave me the most realistic explanation of what ACTH would do to Riley.  Prepared the most for what was to come.

I'm going to share a video from Stef's  facebook page that tells their story and shows what an amazing family Patrick has here on earth.  They truly are incredible.

Team Patrick

It's hard to watch without tears because they describe what our life felt like when Riley was first diagnosed and yet they don't have their sweet baby to love on today.

This Saturday it will be 2 years since Patrick passed away.  He was 27 months old.  I was thinking about this last night and Riley will be 28 months old on Patrick's Angelversary.  Gave me the chills when I really started to think about Patrick and his family.  They decided to honor this day by gifting Patrick's adaptive medical equipment.  If you don't know equipment like Riley's stander is expensive and rarely covered by insurance.  Ridiculous.

When I saw that they had an adaptive stroller available I emailed Stef. We've wanted this exact stroller for so long but, didn't think that we could justify the expense as we will need a wheelchair in a few years(possibly next year) and we needed to save our medical coverage for the day that we pulled the trigger on the wheelchair.  Well they picked Riley and now, again, for the millionth time in the last two days I am getting teary.  Being that they live in WI I was doubtful that they would pick Riley.

From Stefanie Gerberding's FB page.

  "So many things with Patrick felt meant to be and, honestly, a bit magical. We are feeling that magic with finding homes for Patrick's adaptive equipment. Riley is a beautiful girl in California with Infantile Spasms, like Patrick. Her mom, Megan Hopper, and I have talked a few times as my sister put the two of us in touch. They have participated in Team Patrick fundraisers even. Turns out the adaptive stroller is something they have been searching for and need! They will be flying out to pick up the stroller because they want to thank us in-person...doesn't that tell you how amazing they are?! We are so thankful Patrick's stroller is going to Riley. They are giving us the best gift of letting us share Patrick's memory and legacy. Please go and "like" Team Riley!"

I am blown away by the generosity and kindness that The Gerberding's have.  So, after a quick chat with my mom and Dave I decided to go pick up this stroller myself.  Shipping versus plane ticket is not that big of a difference and my heart is telling me that I must give Stef and Tim a hug in person to say thanks.  I know that parting with these items can not be easy for them.

So I am sharing this today because it is my hope that you will think about the Gerberding family tomorrow.  Whether you say a prayer for them to get through the day, just think about Patrick and the impact he had on all that knew him or do your own random act of kindness in his honor.  We, as a family will be keeping  Patrick's family in our prayers and will be finding ways to pay it forward in Patrick's memory tomorrow.  And soon, hopefully in a few weeks, I hope to be meeting Stef and Tim in person and giving them a gigantic hug from Team Riley.  We're just blown away by this amazing family and their incredible generosity.

Riley can not wait to use Patrick's adaptive stroller and feel his love through this amazing device that will allow us to include Riley in more of our daily activities.

People are good.  These special children that are placed in our lives can teach us more about humanity then most adults can.  Acts of kindness really do make an impact.  If you doubt what a simple act of kindness can do for one person I hope your doubts are calmed by Patrick's memory and the impact his family is having on so many.

As a family we will continue to pay it forward in Patrick's honor.  I hope you will too.

Fight On!

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

Tuesday, June 24, 2014

Decisons

Having to make big decisions for our kids (all 3 of them)  is probably one of the most stressful things we've had to do as parents.  I remember the angst we felt (well more me then Dave) last year about whether or not to send Logan to Kindergarten or wait another year.  And Logan did great, exceeded our expectations and reassured us along the way that we didn't mess up the rest of his life (at least for now :))  I know as we navigate parenthood there will be tons of other decisions we need to make and I am sure it won't get easier.

For Riley we need to make decisions that scare me sometimes.  It's the same type of anxiety I had when trying to decide to send Logan to K but, different.  I am not an MD.  I was never in medical school.  My hospital experience before Riley got sick was working with nurses to help cover them with insurance policies. So yeah not exactly a hands on medical background.

As time has progressed and we've started to add words to our vocabulary that I never knew existed we're learning that our decisions on behalf of Riley are as important as the input we receive from her doctors.  Now we always go in to these situations with as much information as possible but, having the ability to use the words we've learned to work through scenarios with Riley's doctors makes us feel as if we are doing everything we can for Riley.  We have to go with our gut though in most instances because again "we're only her parents".

Thursday we will be back at Neurology.  This time in the Keto Clinic.  We will turn in our zillion page questionnaire about what Riley eats (remember everything is via gtube so the paperwork has had me rolling my eyes) we'll meet with the nurses and dietitian and we're making a decision to put Riley on the Ketogenic Diet.  It's what my gut is telling me that we need to do for Riley.  It's also something her doctors agree to.

Unlike other families who have children on the Keto Diet we are lucky, if you can even say that, in the sense that Riley is 100% gtube fed so we won't need to adjust her diet or what she eats but, just change formulas again.  Here's to hoping the keto formula is nicer on Riley's digestive system then the one we are on now!

We also hope to discuss taking Riley off the Sabril.  We had our first appointment last week with the Ophthalmologist and although everything looks perfect in regards to the health of Riley's eyes, I don't believe Sabril is doing what we were hoping and I don't want this to be a med that is given on top of other meds if it is not helping. Remember a lot of children end up on a handful of seizure meds because the doctors just keep trying and adding and don't take away.  So we'll see where that discussion ends up.  I have a feeling though that they won't want to go this route.  Perhaps it's the pessimist in me.

The good, although frustrating news is as I mentioned everything looks great in regards to the health of Riley's eyes.  It's her brain that struggles to help her see. (which we've known since day 1)  I was skeptical when we first arrived at this particular doctors office about what his demeanor would be in regards to Riley.  His encouraging words as we left about the health of her eyes and his use of the term we've come to know well "plasticity" of the brain reassured me that we are doing all that we can to help Riley.  She has all the "equipment" so to speak it's just a matter of continually working with her and for her to see what she will be able to do.  We'll see this doctor again for another exam in September.


Riley has been doing well given all that is going on.  She is amazingly strong and brave.  We had to take her to the pediatrician last week for a couple of shots and she took them like a champ.  At first I think she was having ACTH injection flashbacks but, she didn't even cry.  Just held my hand and whimpered a bit. Logan can hardly believe that his sissy was so brave.  He could use some of her strength for his shots!  We were able to have lunch at my parents house after which made for a nice afternoon.



Summer is definitely here.  We had a wonderful time this weekend swimming a ton and  Logan loved having Tobin and Uncle Scott over to swim on Saturday.



I messed up registering the boys for VBS  this week so we're spending a lot of time together.  And really it is probably a blessing in disguise.  Dave also happens to be out of town until Friday so I am just hoping we make it until then! And yes I know we will.  We have such an incredible support system and "back up" team in place in case anything goes wrong and at the end of the day I am thankful for that.

Just today I met a grandmother whose daughter had spoken to my mom at the park before.  She noticed Riley's suction bag (it's hard to miss if you know what it is) and we struck up a lengthy conversation about her grandson who got "sick" at 9 1/2 months old and has "S" words and also has a gtube and trach.  It's funny and may sound silly but, the decision to go to the park was pretty last minute but, was what I needed.  Meeting this grandmother and hearing her story and the struggles her daughter goes through (as a single mother) with a child very similar to Riley (although he is 7) was the kick in the booty I needed to see that although some days are rough, others have it much harder and do this without the kind of amazing circle we have surrounding us.  I've learned that you just never know when these moments will be placed in your life and can't stop thinking about it.  I also hope to meet this mom/son one day as I am pretty sure we'd have a ton to chat about!

Because of our amazing support system, the kids were able to spend some time with Grandpa and Grandma Hopper yesterday while I attended a funeral and I think I can speak for everyone that they had a nice time together.  Spending time with the Grandparents while mom and dad are not around really is good for everyone!

We hope your summer is going well!  Hard to believe the 4th is just next week.  We're living in the moment and taking advantage of time together before school starts again!  In between the craziness that is naturally our life,  Riley is working hard at her therapies and should start ST again in a couple weeks. She's also continuing to prove to us that hope, faith and love really can get you through!

Fight On! and Go Team USA!

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