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!
Love,
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!

Love,
Dave, Megan, Logan, Mason and Courageous Riley

Tuesday, March 25, 2014

Positivity and Prayers

Sometimes one of the hardest things for us to do (even though we preach that it's what we want to do) is to stay positive and be positive.  It's not that there aren't a ton of positive things going on in our life, it's that saying it out loud or celebrating a Riley milestone makes us nervous. '

I know I always feel that if we're making progress and things are going too well then we're days away from something going wrong.  Almost a year after coming home though we have tons to celebrate and the little girl that the neurosurgeon told Dave would be a "vegetable" for life is defying all odds and proving to us that the faith we had in her was real.

This is a picture montage of Riley defying the odds.  Riley picks her head up UNASSISTED and reaches for her toy UNASSISTED.  This is just amazing!

Since having her "ear" turned on Riley is reacting to her family, her caregivers and to instructions on what to do.  Life has returned to Riley's face and she SMILES!

Back in the PICU days one of the neurologist's who we were drawn to because of his quirky disposition and cautiously optimistic attitude towards Riley told us that once Riley smiles again big things will be ahead of her.  Smiling is a milestone we have waited a long time for!

We met with this particular neurologist on Friday.  For the last time.  He'll be moving back east to be closer to family and has landed a fantastic job in Florida.  Fridays appointment was extremely emotional for me.  Not only because we would be parting ways with a doctor that has been with us since the beginning but, because Riley really impressed him with what she is doing and she SMILED at him.  I truly believe it was her way of saying thanks.  Riley knows who is on her side and who is rooting for her.

The appointment went great.  We're upping one of Riley's seizure meds due to her weight.  It's to be expected.  We discussed an upcoming EEG.  I expressed my nervousness about another EEG.  And he reminded me of all of the positive things Riley has going for her right now.  Seizures are under control (for the most part and in comparison to late last year) and she's making amazing progress therapy wise.  Things that I know. What I was trying to tell him though is that no matter how well things are going for Riley I will always be nervous before a big appointment or test (same feelings I have for Logan and Mason).  It's how any mother would feel really.

After he was done he brought in the Sr. doctor to check on Riley and that's when I really lost it.  We were discussing Riley's implant. He was thrilled that she had it done.  He asked me about ST.  I reiterated that we are getting a new speech therapist because we need someone that can work with Riley on total communication and someone to help us help Riley find her way.  And then... he agreed with me.  And I cried.  Happy, emotional tears.

Riley having the ability to communicate with us is a huge part of WHY we pushed so long and so hard to have her get the CI.  There was a time when another Sr. doctor (in another specialty) questioned me on why we would even consider getting a CI for Riley.  As he put it in her "condition".  It took all I had at that time to hold back and not punch him in the face.   Finally someone else saw the possibilities like we do in Riley.  Finally someone else agreed with me how important it was for Riley to have the CI.  Finally.

This particular doctor could be my grandfather.  My tears legitimately concerned him I think.  He asked me 3 times how I was doing.  And if I was lying to him.  I can laugh about it now but really I wanted to scream that yes I was doing fine and that my emotions came from the fact that I just met him 2 minutes before and he wasn't a jerk, he was positive and it was refreshing.  And he wasn't brushing off my daughter because of her on paper diagnosis (it happens more then you'd think).

We also discussed who did Riley's implant and he was impressed.  He called Dr. Niparko the "guru" in his field.  The entire journey to implantation from our first audiologist appointment until now really was meant to be.  Even down to who ultimately ended up in the OR with Riley in the 11th hour.  Sometimes things do happen for a reason.

Tomorrow we'll be heading back to CHOC for Riley's 2nd Laryngoscopy/Bronchoscopy to remove her granuloma.  Now if things go well, which I am hopeful they will, we'll be in and out of the hospital.

However, there is a chance that they will need to open up her stoma site to get to the granuloma.  If this is the case we'll be in the hospital a few days.  We're really hopeful that they don't need to cut in to her stoma site.  Riley has come so far the last few weeks and my greatest fear is that a longer hospital stay will mess up this wonderful progress we have going.
On the flip side once this granuloma is gone Riley can wear her PMV (passy muir valve) again and we can hear her voice again.  We've only been able to hear Riley here and there when she makes noises over the trach we really miss her "voice".  We want to hear Riley cry, perhaps make sounds and maybe one day say mama and dada again.  She can also proceed with the swallow study once this procedure is done and start feeding therapy.  Right now Riley is 100% gtube dependent.


So even though I'd like to close my eyes and wake up on Thursday after this is all over I have to look at all of the positive things that are to come for Miss Riley once we are past this next little hurdle.  We'll be in the OR early (7:15 am to be exact) and Riley could really use your prayers this time around.  The surgeon knows what to expect and he'll be joined in the OR by another doctor with even more experience then he has just in case.  Even though I know Riley will come out of this surgery just fine the what ifs and the possibility that this may turn in to something more complicated leave us feeling a bit uneasy.

As always thank you for your continued support and prayers!  Fight On!

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

Monday, March 17, 2014

Birthdays, Baseball and Fun!

The weekend after Mason and Riley's actual birthday we had their Princess & Pirate party.  Fun was had by all and we can't thank everyone enough for being there to help celebrate our Princess and Pirate!  Special thanks to Jen Jen and Casey who were over Friday night and early Saturday to help us set up.  You two are amazing and we love you!







Last week Logan had his first official Tball game.  He was very excited as you can see.  It seems that the whole team is still trying to get used to the positions and concept but, it is cute to watch them all out there being cheered on by family and friends like they are in the pros!  2 of Logan's friends from school are on the opposing teams so we have to have a little pep talk before hand on days that Logan's team plays his friend's otherwise he'll run all over the field to high five and chat with them!

Friday was the Jog A Thon at Logan (and Mason's) school.  Riley was able to come with us to cheer her brother on.  Logan kept going around and around the track during the 1/2 hour time they had. We think he did 12 laps.  There were food trucks, face painting, a cake walk and a dunk tank.  We all had a great time.

Somehow between leaving the school and arriving home we lost Riley's implant.  It was a nerve wracking evening that had me texting whoever I could at the school and had Dave and Logan back at the school in the darkness looking everywhere for it.  To make a long story short it was found.  Before it was found though we were reminded of the goodness in people.  Every person that was still at Sonrise that night stopped what they were doing to help try and find the implant.  A mass email was sent out to all families and I've been told 2 families went back on Saturday to try and look for it in the daylight.  It was nice to not feel alone in our search and the way everyone came together for us is humbling.  So thank you to everyone who prayed for us, searched for us and spread the word.  Now I need to buy something to keep the implant on Riley's head!

This weekend was HOT and Dave wanted to bbq for his birthday so Uncle Scott, Tobin, Uncle Mike, Tia T and Mia were over.  Mia spent a lot of time with Riley.  It was nice that we had a nurse who didn't mind and was encouraging the interaction.  Before they left for the night Mia, Riley and Mason read stories together.

Yesterday we stopped by Grammie and Pa Doug's so we could see Molly and Luke (and of course Uncle Brad and Aunt Kara).  Mason is not quite sure about mommy holding Luke.  He's really in to pointing out babies these days so we're trying to teach him to say baby Luke instead of just baby!  Molly and Logan of course had fun running around together and Molly had Logan playing house.  She made the rules and Logan actually followed them!  They were both sad to part when it was time to head home.

Today Riley had therapy with her DHH teacher.  At the end she made her first piece of art work with a color dobber (just like a bingo dobber).  She let me help her go up and down on the paper and when she was done she was done!  Tomorrow we'll head to the pediatrician for Riley's 2 year old check up and clearance for her surgery next week.

In the meantime we are enjoying the normalcy and routine that we are getting in to.  Of course I am always wating for something to go wrong and really have to remind myself to live in the present and appreciate each day as it comes.

Happy St. Patrick's Day!



Love,
Dave, Megan, Logan, Mason and Courageous Riley

Wednesday, March 5, 2014

One Day at a Time

We had a great time Friday celebrating Mason and Riley turning 2!  We were able to take Mason to lunch at our favorite mexican restaurant on Friday and he enjoyed every minute of his one on one time with mommy and daddy.
Yummy!

Riley had a great day as well and even got the day off from therapy since the weather was so crazy! We ended the day with pizza and cake with the grandparents.
Hi Pa Doug
Riley even tried some frosting :)
Frosting


The official birthday party is this weekend and I have never been so happy that we chose this weekend over last as it was rainy and cold and we probably would've had to cancel!  We also started to notice that our windows were leaking and it was creating quite the mess with all the rain we had.  Now that we've dried out a bit and we're expecting 80 degree weather n Saturday we're hopeful that everything will go as planned.
Hi sissy want to play with the puppy?

Monday I took Mason to the pediatrician for his 2 year old check up.  He'll be starting "school" tomorrow (2 yr old preschool 2 days a week) and we needed him to have his check up before he started.  The appointment didn't go as well as I expected and I am still trying my hardest to not think about the what ifs.
Dr. Mason

 Mason has a heart murmur.  The pediatrician noticed it at his 18 month appointment but, wasn't overly concerned.  Well on Monday it was more noticeable and so she's referring us to a cardiologist.  These two are going to turn my whole head of hair grey!  The good news is Mason is thriving.  He's 35 inches tall and 29 pounds.  He's hitting his milestones and doing everything he should be doing at 2.  So while all signs point to this being insignificant it still leaves me unsettled.  We'll see a cardiologist in the next month or so.

Last week Riley also had another appointment with her audiologist.  She's doing really well with her implant and had definite reactions while the audiologist was testing the channels in Riley's implant.  We go back again in April and at some point in the next few months they will have Riley back in the sound booth to see what type of response Riley exhibits now versus before the implant.  Remember Riley isn't hearing like you and I do so much of what she's doing now day to day is helping to train her "ear" to hear certain sounds and identify with them.  We've been encouraged to use baby talk around her and repeat things over and over in a sing song fashion.  Similar to the natural actions you'd have around a newborn baby cooing and what not.  We're still amazed with the difference in Riley's face while she has the implant on.  We know she appreciates being able to hear sounds even though I am sure there are times she's like to tune us all out.
With all of her babies!

We also met with Riley's ENT doctor last week and have a tentative plan in place for removal of the granuloma.  She's scheduled for surgery at the end of March (we may push it back one more week just so we're out of the official Flu season).  When the doctor gets in to the OR and if he is able to remove the granuloma without opening up Riley's stoma site it should be an easy procedure.  If he is still unable to get to the granuloma like last time and needs to open up the stoma site it will be similar to the surgery when Riley's trach was initially placed and may get Riley a ticket to being inpatient for a few days.  Because of this possibility we are trying, as best we can, to plan around flu season.  Once this procedure is done we can begin to work on other therapies.  Feeding, swallowing etc.  Until the day that Riley is dencannulated (and yes I do believe that one day in the future she will be) the granuloma has the possibility of growing back.  It's the nature of the beast as the trach is a foreign object that Riley's body is trying to expel and with that comes the scar tissue.
Sleepy baby in her new jammies from Grandad and Grandma.

Sometime in the next couple of weeks Riley will have another round of Botox and hopefully the stander we ordered will be here next week so we can start to use that again with Riley.

In the meantime we're busy with life in general and trying to just take things one day at a time.  Mason's diagnosis hit me hard.  Even though we knew about this 6 months ago I put it in the back of my mind because until it was time to worry I really didn't have the emotional energy to add it to my list of anxiety producers.  For now I will continue to look at the patient (Mason) and remind myself that he looks good, is doing well and is growing as he should.  Hopefully this will just be a blip in Mason's year and it will turn out to be insignificant.  If not... well there is not a "if not" right now in my mind.

Fight On!

Love,
Dave, Megan, Logan, Mason & Courageous Riley

Thursday, February 27, 2014

Happy 2nd birthday babies!

It's been a ride.  Nothing like we ever imagined it to be.  Twins.  Sharing.  Doing things together.

We've watched the twin bond thrive through the unimaginable and know that Mason is the best therapy for Riley.  Mason adores Riley and spends time with her every single day.  This isn't what we wanted.  This isn't the way we envisioned it but, it's our normal.

Riley has proven to be the bravest person I have ever known.  Multiple hospital stays, surgeries, procedures, meds.  She's a hard worker and shows us in therapy that she is trying to do the things we ask of her.  She's still "Riley".  Riley is stubborn and picky and will let you know when she is unhappy with something.  Riley is our pretty pretty princess and my girly girl.

Through everything, Mason has been there for her, every step of the way.  We're thankful that the bond they have is unbreakable.

Mason has become a little boy.  Strong, stubborn and funny.  He has us in stitches every night.  He loves lawn mowers, trash trucks and helping the cleaners.  The kid is a neat freak!  He's silly and smart and quite the daredevil.  Mason loves his "brodder" and follows him around wherever he goes.  Mason is independent as well.  He wants to do things his way and with no help.  Mason loves the "me me's" (minions) and "mo mo" (Elmo).  It's a joy to watch Mason grow.

I will forever be thankful that after struggling to have another child we were blessed with 2.

Riley's illness has been hard and yet has taken us on a journey that no one would ever understand.  My 3 kiddos adore one another and their love fuels our love for our future.  Our life is not perfect.  In fact each day tests us more then we can explain.  But... we are together and together to celebrate another birthday.

I am thankful that today we celebrate BOTH Mason and Riley.

Happy 2nd  Birthday Babies.  You have both taught us more then you will ever know.  Your TRUE love for one another will always remind us that LOVE concurs all.


Happy 2nd Birthday Mason & Riley!

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

Monday, February 17, 2014

Happy 2nd Birthday Mia!

Sorry we've been MIA.  But, I guess it's a good thing.  Things have been pretty normal, as normal as they can be and it has been nice.  Riley has continued to be able to join Mason and Grammy on walks to the park a few days a week and has been doing really well in therapy.
What Riley's CI looks like on.

Riley's personality is really coming through more and more each day and it's a blessing to be able to see it.  It's something we were told we'd never see again.
Hey Grammy.

We've been very busy with various activities and outings and we've been sick.  Thankfully the cold that I shared with the boys didn't get to Riley or Dave.  Keeping Riley healthy is always a challenge and I was nervous that my simple cold would end up landing Riley back in the hospital.  But, it didn't and she was able to stay healthy.
Therapy time

Working hard!

Logan had his 100th day of school.  And yes that is my kid with the goofy smile in the class picture!

We were able to get in some adult time at the Laker game last weekend with Uncle Scott and Aunt Becky.  It's always nice to get out of the house without the munchkins!

Of course we celebrated Valentine's Day and I'm not sure if the boys enjoyed their heart shape donuts or mounds of candy more.  A restaurant I used to work at was making heart shaped pizzas so we ended the day with that.


This weekend we were all able to attend Miss Mia's 2nd birthday party.  I can't say enough about the relationship my kiddos have with Miss Mia, her parents and extended family.  I suppose "framily" is a good made up term to describe our friendship.  As I've mentioned before Mia loves Miss Ry Ry.  Her true love for Riley is a reminder to us daily that children really do see no differences and love unconditionally.  Although Riley may not run around and play with Mia she is always checking in on her and making sure she's okay.  We could all learn a thing or two from these little people that drive us bonkers most of the time!
Love for Ry Ry

Mason barely stopped all day from playing in the bouncer to running in and out of the house over and over again.  Logan was thrilled that Mia's older cousin was there and he followed Roman around most of the day.
The crazies!

Cheese!

Riley also got to finally meet Miss Addy.  Addy is as brave and courageous as Riley and I have a feeling these two are going to be bff's as well.
Hey?  Who is this?  Meeting Miss Addy.

Today is Mia's actual birthday.  Happy 2nd Birthday Mia.  We love you for the little lady you are becoming!  Besitos!!!
Yummy!


Mia's birthday means that the twins are not too far behind.  Invitations are going out today for their 2nd birthday party and it's hard for me to believe they'll be 2.  As the twins continue to become their own little people we try and appreciate each day as it comes.  I still have waves of grief that come from time to time. While some people have reminders around them of the differences their children may have from others we have a daily reminder.  Remembering that Mason (and Logan) are Riley's best therapy helps us to get by but, it still stings.  Instead of focusing so much on the differences though we try to celebrate the fact that Riley is here and able to celebrate her birthday.  The hard days and sleepless nights really are worth it.
Sweet snuggles with Daddy

This week we'll be back at therapy and we'll meet with the ENT to discuss Riley's next surgery.  I am hoping we'll be able to put off the surgery until after the birthday party but, realistically I know this may not be possible.  We'll see.
Someones hair is getting LONG!

We hope you all had a wonderful Valentine's Day (or as Dave calls it the fake Hallmark holiday) and that you were able to spend time with the ones you love and those that love you.  Today Logan is off from school and our 3 amigos are hanging out together.
Silly boys and video games!  Riley's wondering where the dolls are.


Fight On!

Love,
Dave, Megan, Logan, Mason and Courageous Riley