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

Friday, April 18, 2014

Happy to be back home!

Leave it Riley to keep us on our toes and remind us that life is still so unpredictable.

Wednesday evening Riley spiked a temperature and had a red rash around her trach site that was spreading rather rapidly.  I called her ENT's office and had a return call within minutes from the doctor.  After he spoke with Riley's nurse he was concerned about her developing cellulitis.

So Riley, Dave and Riley's nurse loaded up the car and headed to the CHOC ER to have Riley checked out.  They ended up starting an IV and antibiotics as the symptoms Riley had definitely pointed to signs of an infection.  They also kept Riley overnight to keep an eye on her and administer more of the antibiotics through the IV.

We're still waiting to hear back regarding the culture that was done but, we're happy to say that we are home now and Riley is continuing on antibiotics for the next 10 days to clear up whatever was going on.  Discharge paperwork states that it was cellulitis although there is some confusion as to whether it was just tracheitis.  Regardless of the diagnosis Riley is on the mend!

I truly believe that is was because of the fast actions on Riley's nurses part in recognizing that something was "different" that we were able to get in to the hospital, get meds and get back home as quickly as we did.  For Riley, any little infection can turn in to something much bigger in a matter of hours if it goes unnoticed.
Ready to head home!

Having Riley back home to recover is the answer to our prayers.  Spending another Easter separated would have been heart breaking to all of us.  Especially to Logan and Mason who have been looking forward to all of the activities and gatherings we have planned.  I'm thankful my boys love their sissy so much.

Before our eventful night on Wednesday Riley had been doing well.  She's still having seizures here and there and her medications have been upped again to try and better control them.  It's possible that the seizures are happening because of the infection brewing and a cold that has lingered around longer then usual.  At least that is our hope.  Next Thursday Riley will have an EEG to check on what's going on in her brain and we hope to have more answers then.  EEG's spike my anxiety and I am not looking forward to the actual test but, it will hopefully provide us with some answers and perhaps show us some improvement since the last EEG.

We've been busy with activities and life.  The weather has been hot and then cold again so we've been trying to take advantage of the nice weather with trips to the park and outside activities.  Logan has been doing really well in Tball and has received the game ball twice this season.  It's been fun to watch the kids all improve and start to understand the game a little more.

Cooling off

Watching her brothers be crazy!

Slide fun!

Riley had her first visit to the dentist last week and got a 100% on her "exam".  I was able to find a pediatric dentist close to home who sees special needs patients.  He has privileges at CHLA which is fantastic just in case Riley needs any procedures done in the future in the OR.  The medications Riley takes can cause her gums to grow over her teeth and of course we worry about tarter becoming loose and Riley aspirating it so it was nice to get a clean bill of health!

This week Mason had grandparents Day at preschool.  Grandpa Hopper, Grandma Hopper and Grammie were able to attend and Mason has asked about the bubbles that they played with everyday since Tuesday.  We're happy that he is adjusting so well to "school" and feel confident that our decision to send him a couple of times a week was a good one.
Hanging out with Grandpa Hopper

Bubbles with Grammie and Grandma Hopper

Mason and Logan also had their Easter parties yesterday.  Due to not knowing if/when Riley would be discharged we had to rearrange our original plans.  I was able to be at Logan's school for the egg hunt and then Logan got to leave early with me to pick Riley up.
Waiting to get some eggs!

Logan being able to see Riley in the hospital environment and be a part of bringing her home really helped to ease his fears about Riley being "sick" and back in the hospital.  He understands much more of what is going on with Riley and worries so much about her when she is not at home.
Hanging out with sissy

We hope you all have a wonderful Easter weekend.  We are looking forward to time with family and friends.   We'll hopefully squeeze in a visit to the bunny tomorrow which I am sure will leave us with a priceless picture of our trio.

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

Friday, April 4, 2014

1 Year Ago Today....

One year ago today... we brought Riley home.

In many ways I wish we could go back to that day knowing what we know now.  Although I suppose that not knowing exactly what we were in for was probably a good thing.  Much of the knowledge that we have now about follow up appointments, scheduling, in home nursing care, state provided assistance for children like Riley, therapies and unexpected hospitalizations has come by just diving in and figuring it out.

 often joke that hospitals should send you home with a manual titled "What Now" or "What's Next".

I remember how scared we were to drive away from Healthbridge alone.  It was a freeing feeling and yet as we drove away we both knew we were beginning the rest of our "new" life.  The unknowns were the worst.

One of the hardest things for us to adjust to was having another person in our home 24 hours a day.  I remember when we had thrown around the idea of a night nurse when the twins were newborns.  We decided against it mainly because we couldn't imagine being asleep while someone else cared for our babies in the next room.  Now we really had no choice in the matter as Riley needed 24 hour care.

A year later our nursing staff is a part of the family.  We welcome new nurses and find peace in our veteran nurses who know the program and how our family dynamic works.  We could make it work without nursing care but, it would be hard.  As it is, going anywhere with Riley requires 2 adults that know how to care for her.  One driving and one sitting with her in case of an emergency.  Making sure Riley gets her meds and feeds on time while controlling her 2 crazy brothers is near impossible.  Trust me.  We've done it multiple times and felt like we'd run a marathon after!  Riley's nursing staff helps our family maintain a relative sense of normalcy.

When we arrived home we had no idea what was ahead of us, ahead of Riley.  For 100 days we were in the safety of a hospital where doctors were available 24/7 in case anything went wrong.  Need a med adjusted? it could be done that day.  Have a concern about Riley? The doctor would be right in.  It took us until the beginning of this year to really get Riley "stable".  In many ways we are just now starting the next chapter with Riley where (knock on wood) frequent hospital stays start to become less frequent and planning for the future is more realistic because the anxiety of not knowing what tomorrow may bring is beginning to subside.

In the last year Riley has gotten glasses, received weekly therapies, had 5 or 6 hospitalizations (at a certain point you stop counting because it becomes a bit depressing), has had a cochlear implant placed and activated, has been to a multitude of doctors appointments, had multiple blood draws and diagnostic tests and has grown!

Riley is now almost 35 inches long and weighs 33 lbs!  Riley is rolling, looking around, sitting up with assistance, interacting with her brothers, smiling and slowly but surely improving.

There will never be a time that I don't wish that this hadn't happened to Riley.  We still miss our "old" life terribly.  On days when our stress levels are through the roof and we wonder how we will make it all work all we have to do is look at our 3 kids all together and it puts life in perspective.  We wouldn't have it any other way.

Riley is courageous, hard working, stubborn and the bravest 2 year old I know.  Each and everyday for the last year Riley has taught us lessons in patience, faith and persistence.  I know that my life is infinitely better because Riley is in it and I'm not saying that just because I am her mommy.

We're looking forward to what the next year has in store for Riley.  There will still be many changes and things that will be new to all of us but, together we'll get through it.  I am confident that Riley is going to amaze us all in so many ways!

We hope you all have a wonderful weekend and know how much your support, good thoughts and prayers means to us.  Not only to Dave, Logan, Mason, Riley and myself but, our extended family as well.

The emotional toll this has taken on every person that loves Riley has been tough.  The support that our families receive from their circles of friends and colleagues has been felt by our little family as well.  It does not go unnoticed or unappreciated.  So thank you.  To each and every one of you.

And as always....

Fight On!

Dave, Megan, Logan, Mason and Courageous Riley