Tuesday, April 29, 2014

One Day at a Time

We live by the mantra one day at a time.  I find that if we stray from this things just don't go as planned.  Some days it's more like live in the moment.  I like to plan things, know what's ahead of us and I am still learning that planning things in our life is more like penciling them in until the very last moment when we can actually mark it in pen.  I had to cancel a mommy weekend last minute last week because of Riley being unstable and it was a reminder that we just don't know what tomorrow will bring.

We had a wonderful Easter weekend.  I woke up last Monday morning ready to do it all again.  Riley was home.  We spent time with our wonderful family and friends and everything went as planned.

We started off Easter weekend by dying eggs.  Riley was able to participate in the fun as well which made it special for all of us.

We also paid a visit to the Easter Bunny.  I grew up with Santa and Easter Bunny pictures every year with my brother and my mom still displays these hilarious pieces of holiday history every year.  We missed Santa and the Easter Bunny last year so it was my mission to make sure it happened this year.  Of course we waited until the last minute to do this so the line was horrendous but, thanks to some amazingly sweet workers at the mall they were able to fast track us through the line and we were in and out in less then 10 minutes.  Probably a good thing for Mason because although he was very excited about meeting the bunny he did not want to take a picture with him/her!

I promise he was fine 2 second after this picture!

We started off Easter morning at our house with brunch with Grandpa and Grandma Hopper, Uncle Scott and Aunt Becky and Uncle Mike and Mia.  Easter afternoon we were at my parent's house for possibly the last family holiday in Arcadia as they have their house for sale :(  It was a wonderful afternoon filled with family and many laughs.

Last week was also Logan's Spring Break.  Grandma and Grandad were in town from MT and we were able to spend some time with them which the boys loved.  Unfortunately, they were in town because Grandad's mom, Grandma Delk, passed away a few days before Easter.  We were able to attend her celebration of life service last Thursday which was a wonderful celebration of a life well lived.  She leaves behind a large and extremely close family.  I wish them all peace as they deal with the loss of their Matriarch.

Because Grandma and Grandad were in town they were able to come to Logan's tball game on Tuesday and bbq with us after.  It makes me happy that my boys pick right up where they left off with Grandma and Grandad no matter how long it's been since they've seen them.

Tuesday morning Riley had her appointment at The Center for the Partially Sighted.  This is an appointment I have been looking forward to because my mommy gut has had me feeling like Riley can see better.  I can't tell you how many things are improving since Riley's implant was activated.  It's been a wonderful thing to witness.

We don't have the final report just yet but, Riley's right eye has gone for nearly 100% vision loss to 30%.  That's a 70% improvement!  Definitely something for us all to celebrate!  In visual therapy they'll start patching her good eye (left) and see if it helps her right eye improve even more.  Although her prescription did not change we will be getting Riley some new glasses.  It's been almost a year since her first pair and our little miss is growing!  Tuesdays appointment was a reminder of how far Riley has come.  We didn't think that such a huge improvement was possible when it came to Riley's eyesight.

Wednesday we were back at PT after being gone for a week due to Riley's hospitalization and illness.  Her new AFO's were delivered and they are too cute.  Her old AFO's were plain white and the new pair have cute little hearts all over them.  They are making a duplicate pair to adjust some things that aren't "just right" but we were able to bring the AFO's home for use in her stander and overall bracing to help with the drop in Riley's feet.

Because Logan was on Spring Break we tried to sneak in some fun time with him between appointments and our crazy schedules.  He was able to go to the batting cages with daddy, bowling with mommy and John's Incredible Pizza with mommy and Mason on Friday.  I know he had a good week because getting up for school yesterday was hard (it was hard on mommy too)!

This weekend started off cold and rainy but ended up being gorgeous.  Uncle Scott, Aunt Becky, Tobin and Drew were able to come to Logan's Tball game Saturday morning and we all went out to lunch after.  We all came back to our house after lunch and all 3 of my kids loved having their cousins around!

Saturday late afternoon we headed to the St Luke's Fiesta.  It's an annual event that we all love going to and of course we came home with another goldfish!

We're back to our normal this week.  Riley had a rough week last week as far as seizures.  After going 2 days or so over Easter weekend without the "S" word they started back up.  They are mostly happening when Riley wakes up from a nap or is just falling asleep.  Thankfully, these are not the turn blue/d sat type seizures that are really serious for Riley but, they still are "S" words.

Seizures are an inevitable part of Riley's life.  Right now and as she grows we have to work closely with her doctors to adjust her meds and control them a best as we can.  We don't want Riley over medicated and  zombie like day to day but, we also don't want her to be seizing everyday.  I know we have a good team in place to help control these and honor our wishes it's just frustrating figuring it all out.

I know some people think I am crazy when I nonchalantly mention that Riley had a seizure.  It's just something that has become part of our life and we've learned when they are mild and when they are more serious.  Of course my hope is that one day they are non existent.

Because of the increase in seizure activity Riley's neurologist's upped her Depakote again.  They called back on Friday afternoon at 4:30 and when I saw the number on my phone I was mentally prepared to pack up and head back to CHOC!  This wasn't the case though and we were able to do the med increase at home.  I think part of that is  because we have 24 hour nursing care at home and perhaps they trust us now to know when she needs to be hospitalized.  So we're monitoring Riley and waiting for another blood draw this week to see if the Depakote levels go up.  I'm hopeful they will.  Her EEG is now scheduled for May 14th in order to give her time to get over her infection and get the Depakote in her system.  This should provide us with a true reading of Riley's current baseline as far as brain activity goes.

We're also currently on a therapy break.  Not from DHH therapy or visual but, PT/OT/ST.  Why you might ask???  Insurance, State funding hoops and ridiculous paperwork requests.  Just last night Dave was talking to a parent of one of Logan's Tball friends who is a Special Ed teacher.  Everything we're going through and the hoops we have to jump through sounded so familiar to her.  I know that many families go through the same struggles when it comes to their children that are medically fragile but, it doesn't make it less frustrating.  Between trying to fight for Riley's therapies and dealing with our insurance company regarding prescription benefits I sometimes want to scream.

So for now we wait and continue being Riley's advocates.  It's possible we'll need to move Riley's PT (I really don't want to) if our insurance doesn't approve more visits.  My initial plans to start OT through the MTU (Medical Therapy Unit) may not work as they are only recommending a visit once every 3 months.  Thank you State of CA.  4 visits a year for OT???  They operate on the theory that therapy in the natural environment is best.  Duh.

Thanks to our wonderful nursing staff Riley gets OT/PT/ST each and everyday at home.  But, working with an actual therapist more then once a quarter would be nice.  So I'm back to looking at private pay OT and what we can make work to supplement the crappy State provided OT.  And for those who wonder why we don't just go through our insurance for OT it's because they combine PT/OT as one benefit and my hope was to continue PT in one location with one therapist and then use the State benefit for OT.

We're also in the process of getting ST started again.  This should have been in place in January.  After working with the Regional Center and getting approved for services at Casa Colina we now need a new prescription for ST and need to go back through insurance (which covers very little), exhaust our insurance benefits, and then pick up coverage through Regional Center at Casa Colina.  Confused? Somehow it all makes sense to me, although I wish it didn't!

Today we're headed to USC to visit the audiologist.  Riley will have her implant adjusted and I will ask the million dollar question of whether or not we'll look at doing Riley's other ear.  I think I know the answer and it's not one that I like.

Tomorrow we'll be back at CHOC at the pulmonologist .  It will be our second trip there this week as yesterday we drove down for our appointment and I messed up the date/time.  This is bound to happen every once and a while! Whoops.

I'll end the week by taking Mason to the cardiologist.  I've been so distracted by life and the crazy busy days we have that I haven't had much time to think about this appointment.  When I look at Mason it is hard to think that anything is "wrong" with him.  I'm praying that we leave the appointment being told that Mason's murmur is insignificant and we can return in 6 months or something.  Not sure I can take much more then that.

I find that the longer I go between posts the more I have to say. Sorry.  One day at a time.  One hour at a time we're getting by.  Together.

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

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