Tuesday, June 10, 2014

An update of sorts!

First, I am sorry for our lack of an update.  Life. Is. Crazy.  And I'm not sure this update will provide many answers.

Sunday, finally, for the first time in 2? 3? 4? weeks I finally really had a chance to sit down and let you all in on the craziness that is our life.  Dave and Uncle Scott took the boys to the beach and Riley had  her normal lazy Sunday, which always involves sleeping in.  She's a lot like her mama in the sleep department. Much like most of you, we've been running around like crazy people with end of the school year activities and just life in general.  And my delay in posting may also be a result of me trying to finish OITNB as fast as I could!

We've had birthday parties, tball games, Kindergarten pictures/parties, activities, CHOC Walk awards, Kindergarten graduation and celebration, and a fun wedding!  We've also moved out of our office in hopes to find something more suitable for what we need (which means our garage and home office are overflowing with "stuff").  We snuck away for a couple of days of grown up time which was good for our marriage and good for my soul. (7 hours on a lake with no cell service is amazingly cathartic)  We've had doctors appointments, therapy appointments, insurance fiascos, evaluations and decisions to make regarding Riley's care.  We've also tried to keep everything balanced and we're working hard to continue to make sure our boys are happy and don't feel forgotten or less of an importance to us as their mom and dad.  Through all of this there has also been an elephant in the room.  A fear.  A rock in our stomachs that makes it really hard to go about each day.











Last week I finally decided to just roll with everything going on and stop worrying about what I can't control.  You know the teacher gifts that never made it in to the teachers hands.  The classmates birthday party that slipped my mind until it was over.  The fact that Logan missed closing day for Tball because before we left out of town I forgot to mention it to my mom.  I had to clear my mind so that we would be ready for Riley's VEEG.  We had tons of questions.  We needed a plan.  I had to make sure that the new team we'd be meeting knew where we stood.  Knew what our feelings were in regards to Riley's care and knew that we wanted to be able to work together for the common good of Riley. They also had to know that we meant business.  I'm finding that more and more children that have a diagnosis like Riley's have doctors and family members often "give up" on them.  Not all of them but, the stories I hear make me sad.  We will never stop fighting for our little miss.

The elephant in the room is the return of Riley's Infantile Spasms. (They have a new name btw but, I'll get to that in a sec.

Riley is proving that she isn't a textbook case.  She's going to make the doctors work to figure this all out.  Even her audiologist seems to have a hard time working with Riley as she isn't the typical CI patient or more obviously a typical 2 year old.  It's not her fault.  Riley is a bit complicated.  But, as her parent's we will make sure we can develop a "Team" willing to work with us and work in the best interest of Riley.

Riley started Sabril (pronounced Say bril) on 5/22.  Her VEEG was 2 weeks after starting it and although we'd seen some improvements in her spasms they are still around.  I had a nice long chat with Riley's now old neurologist before starting the Sabril, about our concerns, about other options etc.  If, it doesn't start doing it's job soon we're going to need to move on.  We also do not love the idea that one of the main side effects is peripheral vision loss.  In fact this is the one that keeps me up at night.  He reassured me then that there was a very low chance of this happening but, when your child's vision is mainly peripheral to begin with it't a tough chance to take.  So we started the Sabril and hoped for the best.  We have an appointment with a new Opthamologist next week and we'll be tracking Riley as she continues on Sabril.

Friday morning, after being on the monitor all night we met with the doctors.  Dave had spoken to a few of them the night before but, this was the chance for us to really put a plan in place.

It was a team of doctors which included a few of the newer residents who just stand there, most likely told not to say a word, the floor pediatrician, a neuro fellow (who has been around since the PICU days and had very little to say positively about Riley then, wait until you hear what Riley did for her :)), and our new epileptologist,  We're impressed with her so far and she seems to know her stuff.  She also is very open to constant communications in regards to Riley.  If we don't like something and want to change it up she's open to that.  Most importantly though she looks at Riley like she is a person.  She talks to us, as Riley's parents, like we are human.  She's open to our ideas.  If I ever have to give another family advice on picking doctors those 3 things would be at the top of my criteria list.

We started the chat with the fact that Riley's EEG is still abnormal.  Her spasms are still there.  And for funsies my poor child's constipation issues are also showing up on her EEG as she's using all of her muscles to go.  Don't worry we consulted GI while inpatient and got Riley something to help with that!

Is Sabril working:? Will it work?  Really we don't know.  Over the next couple of weeks we will watch her (at home), keep track of how often her spasms occur and see if by giving it a few more weeks at a higher dose it will have a chance to do it's job.  As the days tick by my faith in this new med actually working is diminishing.

I asked again about why the are still called IS's and if Riley will grow out of them.  They have a new name.  Eplieptic Spasms.  And, if left untreated, can turn in to tonic seizures.  For the first time in the last year and a half it actually hit me that Riley's epilepsy has the possibility of taking her from us at some point.  We are playing with fire in regards to the possibility that if we can't get these under control they can develop in to something much worse.  It's scary.

Because we are unsure about the effectiveness of the Sabril we're also looking to switch to the Ketogenic Diet. It's a high fat diet sort of like Atkins.  It is also very restrictive and can have it's own side effects.  To be proactive, Riley had a ton of blood drawn Friday morning and once we have the labs back we'll have a better answer as to whether or not this is something that we can try with Riley.  Our main goal for Riley is to manage her seizures with the least amount of medication possible.  I may be oddly optimistic about the Keto diet but after reading so many success stories it gives me hope.  Ideally, we'd like to look at weaning her off of so many meds.

As I said to the team of doctors Friday morning, I don't want Riley a zombie in life.  I won't let them over medicate her without trying the other options available.  Riley is our fighter who was supposed to be a "vegetable".  Remember the fellow I mentioned who had little faith in Riley in the PICU.  She pulled Riley up by her hands Friday morning and Riley not only lifted her head up for her but held it there.  Take that doctor know it all :)  Dave was there when this exchange occurred and I could hear the excitement in his voice as he told me.  She also tested Riley's reflexes as they do often and they were ALL there.  This doesn't usually happen.  And this is a first for Riley.  We celebrate everything in this house and each and every little thing Riley does is huge for our family.

For now we continue to wait and watch.  We also continue to fight and believe in Riley. I'm sorry we don't have anything more solid to share.  This is just another one of the bumps in the road that we are unfortunately becoming accustomed to.

I don't think that we'll ever get used to this life.  It's ever changing and unpredictable.  One day at a time, together we're doing okay.  All 5 of us.  I promise.


Thank you for your continued prayers, support, messages, calls, texts, friendships and love.  We love all of you!

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




1 comment:

  1. Lots of love to you Megan. We pray for Riley!

    ReplyDelete