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

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!

Dave, Megan, Logan, Mason and Courageous Riley