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!