Faith, Hope and Patience.... A long 6 months

Today its has been 6 months since Riley first showed signs of being sick and had her first seizure. Tomorrow it will be 6 months since she was diagnosed with bacterial meningitis and transfered to CHOC.  A lot has happened in the past 6 months!

Blurry but, Riley being silly on Christmas Day just hours before her first seizure

 

Waiting in the ER

 

Starting this journey.  Intubated/comatose and barely hanging on.

 

 

 

In the last 6 months Riley:
Spent 36 days in the PICU @ CHOC
Celebrated New Year's at CHOC
Had 2 MRI's
Multiple CT's scans and more chest xrays then I can keep track of
Had a blood transfusion
Opened her eyes on New Year's Day giving us hope that she may make it
Received a  trach and a g-tube
Spent 64 days @ Healthbridge
Celebrated Valentine's Day, Her 1st Birthday, St. Patrick's Day and Easter @ Healthbridge
Came home!
Has been home for 83 days!
Celebrated Mother's Day @ Home
Celebrated Father's Day @ Home

 

 

 

 

During the last 180 + days Riley has also:
Started to respond to sounds and toys
Started to roll with little to no assistance from side to side
Started to pull up/hold her head almost completely on her own
Attended tons of doctor and therapy appointments
Got new glasses!
Was fitted for her new hearing aids
Stopped taking BACLOFEN!
Has gained weight with some feed adjustments and weighs in at 20 lbs 11 ounces.  She is 29 1/2 inches long.

Riley has also smiled, slept in her own home now for longer then her stints at CHOC and Healthbridge individually.  She hangs out daily with her family and brothers.  Gets daily snuggle kisses from Mason and frequent chats, kisses and hugs from Logan.  Has daily snuggle time with mommy & daddy. Has frequent visits from grandparents, aunts/uncles, cousins and friends.  Most importantly Riley knows she is home.

In the last 6 months Riley has come a long way from the intubated, PICC line toting, comatose baby that she was when she was first diagnosed.  Little by little Riley is making progress.  Little by little she is showing us all what she can do.

Last night Riley and I had a little chat.  Through tears I reminded her of what I always told her at the beginning.  Be strong, be brave and remember you're courageous.  There were days those first few weeks that I would forget to whisper to her before heading home and I'd call Dave to have him put me on speaker phone so I could tell her.  Daily I reminded her.  We chatted about her journey last night and how far she has come and how insanely proud I am of her.  I also told Riley that she is my hero.

6 months ago our lives changed forever.  I am not the same person I was on December 25, 2012.  Dave is not the same person he was on December 25, 2012.  Riley is not the same baby she was on December 25, 2012.  Logan and Mason are not the same children they were on December 25, 2012.  In some ways our lives have changed for the better.  I am in no way referencing Riley getting sick but rather,  how Riley's illness has profoundly changed not only us as parents but, us as people. Riley's illness has changed many of those around her.  How could it not?

I appreciate each day and don't take anything for granted.  I remember to say I love you and make sure those that I love know it.  I am more active and present with my children.  I pause to take in moments that will forever be kept in my thoughts. I take an insane number of pictures (which my FIL will tell you I already did before).  Those moments, those memories.  I need them documented!  I'm pickier when it comes to relationships.  I'm more organized day to day.  I long for the days that life wasn't this chaotic.  (And trust me on bad days I revert right back to how I would react to any other bad day.  I am human.)  But, the Megan I was 6 months ago is not the Megan I am as I type this.  And,  in all honesty I like this Megan. 

Having to have faith, hope and patience is hard and tiring.  This extends from not only Riley's illness but, other important life events going on around us.  Yet, I have remained determined that I had to keep the faith, had to continue to have hope and had to be patient.

This week two personal things happened that reminded me that faith, hope and patience do work.  Things take time.

As I reminisce about Christmas Day and the time we spent with our healthy, happy, smiling children I realize how fast that can all be taken.  And yes folks that means you only have 6 more months until Christmas.  Did I know that before?  Of course?  Did I really know that?  I often ponder this when I am alone.  I always felt for people who experienced illnesses or tragedies.  I've cried many a tear over family, friends and perfect strangers when their lives were changed in an instant.  But, did I really truly, deeply ever really get it?   Sometimes I wish I didn't but, I sure do now.  At the same time, I now care in a different way when these situations arise.  I've seen personally through the love and support we've received how taking a few minutes to do something for someone struggling whether it be a card or a quick text message or email how important it can be.  I've learned to care more genuinely and express my care more openly.

My positivity the past 6 months has come from my deep rooted love for my children and my desire to do anything I could to make them better little people and in Riley's case to do anything I could to help her get better.  The support we've had from not only our families and friends but, a larger community that is intertwined in our lives through work, friends and personal connections  has helped my little family Fight On.  Remaining positive and waking up each day knowing that I need to get through the day for my family motivates me.  Reminding myself that I am not alone in this pushes me on. 

Giving me the stink eye at today's doctors appt.

Waiting for the GI doctor yesterday

Working on sitting up in therapy on Monday

 

 

And just because her itty bitty feet are so cute in these!

 

I am excited to see what the next 6 months bring. For not only Riley but, our entire family. A lot can change in 6 months. Life goes on. And so do we. Faith, hope and patience.

Fight On!

With lots of love and gratitude to all of you that have helped us make it to this day,

Dave, Megan, Logan, Mason & Courageous Riley

 

Busy, busy, busy!

Riley had a good week!  A busy week but, it was a good busy. 

We started off the week trading in our Expedition for a Suburban.  We were just out of room in the Expedition.  After our outing on Father's Day with all 3 kids plus a nurse and all of Riley's medical equipment it was evident we needed something bigger!   When all was said and done we made money on our trade, lowered our payment and ended up with what we needed! It just made sense for so many reasons!  Now to get a TMRILEY license plate!  I'm hoping it's an available option!

Tuesday was our appointment at the House Institute to meet with the doctor and get Riley fitted for her hearing aids.  We met with Dr. Goddard and I really liked him.  He knew the severity of Riley's hearing loss and what we are dealing with but, also took the time to ask me questions about what I thought and truly listened to my answers.  He agreed with the importance of the now vs. later approach to cochlear implants and he made me feel confident in our decision to go to the House Institute. 
He asked me what I thought about Riley's hearing.  Between Dave, myself, grandparents and care givers we all think she can hear.  When I say think I mean that we all have different experiences with Riley responding to us when we speak to her that leads us to believe she can hear us.  He didn't laugh at me.  He didn't tell me I was crazy.  He took note and I  took that as a good sign.  He recommended that we also have an MRI done at the same time of the sedated hearing test.  The MRI will show us what we are dealing with and what is really going on in Riley's ears.  We'll follow up with him a few days after the sedated hearing test/MRI and if Riley is still a candidate her cochlear implant surgery will follow very soon after.  We discussed where the surgery would take place and although  Dr. Goddard is still in the process of getting rights at CHLA (Children's Hospital Los Angeles) we both agreed that should be where the surgery is done.  If  Dr. Goddard doesn't get his rights there in time there are two other doctors at the House Institute that could take Riley's case and do the surgery at CHLA.  We left our appointment with Dr. Goddard and I felt relieved.

Next we met with the audiologist Jamie who we had seen the previous week.  She made molds of Riley's ears and we picked out the style of hearing aids Riley will be getting.  I wanted to get her pink ones to match her pink glasses but, she made a good point about Mason wanting to play with them if they were a fun color.  So we chose the pair that will blend in the most with Riley's hair color.  For now we are going with a loaner pair as Riley will wear these as a trial before the cochlear implants.  Because we are again on a race against the clock we as her parents and all other care givers will be noting how Riley reacts once these are placed.  Jamie will set the settings on the hearing aids at around lawnmower level and we'll see how she reacts.  I rushed the order and we go back on Thursday to have them fitted and pick them up.  It will be a hard appointment.  I never in a million years thought I'd be needing to pick out hearing aids for my perfectly healthy daughter.  We're okay with this though because Riley needs all of the assistance we can find to help her heal.

Picking out the hearing aids!

Ready for the molds!

Molds ready to go!

Molds all ready!

Hearing aid model!

Wednesday we had PT and a meeting with a lady from our local school district who will work with Riley and our family with communication techniques.  She brought a school district nurse and we went over Riley's case and how we got here.  I held back tears multiple times as discussing the first few days of Riley's diagnosis and life before her illness can be hard.  It's the same sequence of questions with every new encounter with a doctor, therapist, etc.

Normal pregnancy? Yes.  She was a twin. 
Oh really?  Yes, twin A.
Were they born early? No,  38 weeks.
How? Scheduled Csection
What did she weigh?  She was 6 pounds 9 ounces, her brother was 6 pounds even
Oh wow.  That's great.... Me: Yeah I know.
So any complications after?  Yes/no.  Riley spent 5 days in the NICU for observation on lung development but discharged home perfectly healthy.
So any issues with development? NO.  My perfectly healthy, normally developing, immunized child was doing fine.  Then I explain how my twins met their milestones on time.  Not early.  How they were perfectly developing and how Riley's illness went down.

I really need a cheat sheet.  A synopsis to pass out.  Explaining this over and over is hard.  And it's not any one person's fault for asking or wanting to know.  They all have piles of paperwork that needs to be filled out.  Reports to write.  However, I choke back tears each time we get to the how part.  How we got here.  So a cheat sheet.  Generic answers to all those questions that are repeated over and over is probably in order.

I'll meet with these ladies again this week and they will formulate a plan with us on where we go from here and how they specifically will help Riley and our family.

Thursday, we headed back to Dr. Hu (Riley's pediatrician) for a weight check.  I was nervous.  Riley had lost weight so this was a real test to see if what we're doing to help her keep her feeds down was working.  Riley weighed in at 20 pounds 8.5 ounces.  Almost an entire pound in 8 days!  I was thrilled as was Riley's nurse Trudy.  It's the little victories that really mean the most some days!

Thursday afternoon Logan headed to Del Mar with Grammie.  I love that he gets the opportunity to do fun big kid things.  Friday they went to the beach and Saturday headed to the San Diego county fair. 

Since Logan was out of town we were able to get Grandpa and Grandma Hopper over to watch Mason on Friday night and we were able to have a dinner date.  It was nice to be able to eat without the distractions of the boys and we had a ton of fun!

Saturday, I headed off to Atria's baby shower.  We are all looking forward to meeting baby Addison and I really enjoyed the "girl" time while at the shower.

Missing a few but, the momma to be and some of my wonderful girlfriends!

Cutest cake ever!

Today I loaded up Mason and headed down to Del Mar to pick up Logan.  Initially he was going to stay through tomorrow and come home tomorrow night but, it was pretty evident that Logan is a lot like his mama and has a bit of a difficult time sleeping away from home.  We were able to hang out for a little bit at the Del Mar house and then had a nice lunch with my parents at Chiefs in Solana Beach before hitting the road back home complete with Sunday afternoon traffic from h*** on the 5.  I should have planned better but, oh well!

Hanging out at the beach house!

I miss this view!

Lunch at Chiefs!

Dave and Logan ended the weekend with a movie date to Monsters U.  Logan has been begging to see the movie for weeks so I am happy they were able to fit it in tonight!

We'll be busy again this week but, when are we not.  Riley has been so animated this weekend and is really starting to express herself in ways only she knows how.  It's wonderful to see!  It renews our belief in Riley when we see the changes she is accomplishing little by little!  I just know she'll do big things!  She already has.

Fight on!

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

Busy Weekend!

Our Father's Day weekend started off on Thursday with the arrival of our newest nephew!  Luke Scott McEachern was born on Thursday weighing in at 9 pounds 6 ounces!  He is a doll and we are so happy for my brother Brad, SIL Kara and big sister Molly. 

Saturday we were able to bbq with the Hopper clan and as a special treat Logan, Mason and Riley were able to hang out with their cousins Peyton and Katie.  They are here for the summer and we are all looking forward to getting to spend more time with them. 

Yesterday, we went to brunch at Annandale and took the whole family.  We met my parents there and brought along Rachel, Riley's nurse.  It went better then we could have ever imagined and I know it made Dave and Pa Doug's day to see that we could all be together.  Riley wore a dress I had been saving for a special occasion and she wore it well!  Yesterday, was a test run for many things we hope we can start to do as a family outside of the house.  I know Riley wants to be included as much as possible and now with a trip out under our belts I think we will have the confidence to know we can do it again. 

Annandale is special to us because we were married there and we have enjoyed taking Logan over the years to the spot where mommy and daddy "got married".  We brought the twins last Mother's Day when they were only a few months old and took a family picture right where we said "I do".  The picture we took yesterday was in the same spot and we hope to make it a tradition to get at least 1 picture a year in the same place.

When we first found out that our twins were going to be a boy and a girl we were overjoyed.  I still remember the look on Dave's face.  He was getting another son and daddy's little princess.  Riley is and will always be daddy's princess.  In fact we've nicknamed her princess pretty pants.

Dave's devotion to his children is priceless.  He enjoys spending time with all of our kids and makes it a point to do one on one things with them.  He hurts when they hurt and yet, is the strength we all need in times of crisis.  We are all lucky to have him as daddy.  Happy Father's Day Dave!

I had hoped to get a post from Dave yesterday but, it was too hard for him.  I suppose that is why I am often the voice of the blog.  What we live day in and day out is hard.  Especially, on a dad with such a devotion to his family.  He carries a lot on his shoulders each day in different ways then I do.  I couldn't be happier to have him walk beside me on this crazy road called life and am thankful for him each and every single day.

Our children are also lucky to have fantastic Grandpa's and Uncle's who support them and care for them deeply.  It takes a village and these men are an integral part of what holds our family together.

Happy Father's Day Grandpa Hopper

Happy Father's Day Grandad

Happy Father's Day Pa Doug

Happy Father's Day Uncle Brad

Happy Father's Day Uncle James

Happy Father's Day Uncle Scott

and

Happy Father's Day Uncle Mike

 We hope you each know how important you are to us and how much we appreciate the things you do for our family!

We started off the week today with a PT appointment.  Riley really responds to her therapist.  Trudy and I watched in amazement and cheered Riley on as she slowly rolled from side to side and even brought her head up on her own while the therapist pulled her arms.  HUGE for Riley.  So proud of her and it really was a great way to start the week!

Riley will be busy this week with PT, ST, Visual Stim and getting fitted for her hearing aids.  We'll also meet with a therapist from the school district who will begin working with Riley on communication.  Of course we want her to be verbal but, that may not be the best way for Riley to communicate now or in the future.  We just don't know so we will have someone who can help us along the way and is willing to adjust her teaching for what Riley needs and what we desire for her as a family.  Just another piece of the puzzle.


We hope you all have a great week.  I always feel like Mondays give us the opportunity to put the last week behind us and start anew.  For Riley it is another week to show us what she can do and continue to move along on her road to recovery.

Fight On!

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

Where there's a will, there's a way

So how do we stay positive?  How do we make it through each day?  Well, we prepare for the worst and hope and pray for the best.  That is what we can do for Riley.  All we desire is to be prepared as best we can to make sure we know what we can expect if certain things happen so we are preparing and educating ourselves for every scenario possible.  At the end of the day we truly have no idea what the future holds for Riley or for our family.  Our job as Riley's parents is to be ready for anything and provide her with everything she needs to live Riley's life and write Riley's story.

Almost 6 months after Riley's diagnosis I still feel so lost amongst the appointments, meds, therapies and decisions related to Riley's life.  I don't know that my mind will ever really know what it  needs to do each day.  Most of the time it just all gets done because it has to.

Some days I rock.  We make each appointment on time, every work detail is handled, laundry and dishes get done and beds are made.  Some days, it's chaos.  The house is a mess, my boys are whiny pants and I miss an appointment or forget to mail a bill.  It's just life though.  It really could be our life if we were just living the regular "normal" as well.  3 kids under 5, 2 of which are twins.  So really what our normal would be is just super sized in absolute craziness!  Most days I don't mind because there really isn't another option right now and sometimes I mind and cry and vent and whine myself.  Just like any other mom.  It's what reminds me that I am normal and it is okay to feel the way I do.  Thankfully, I have a community of other moms near and far to remind me that it's okay to feel the way that I do.  And that community includes all of you.

Yesterday, we had our appointment at the House Institute.  Wanting to secure the fastest appointment possible I took the 8am Monday morning one.  Not sure what I was thinking.  We loaded the car with all 3 kids at 6:45am and fought traffic to Arcadia to drop the boys off with my mom.  Then we hoped back on the freeway and made it just in time for our 8am appointment.  Where there's a will there's a way!

We met with an audiologist, explained a bit of Riley's history and repeated the same tests that Riley had done at Providence Speech and Hearing last week.  Very similar results and the audiologist also noticed some fluid in both of her ears.  More significant on one side.  She recommended that we keep the sedated hearing test at the end of July and in the meantime we'll meet with the surgeon for the cochlear implants next week and also get Riley fitted for hearing aids.  By doing this she will meet the requirement of having tried hearing aids before the cochlear implant surgery and we still keep this a priority.  It made me feel better to know the audiologist understood how important this was to us.  After doing more research on Bacterial Meningitis and talking to numerous people it is basically a given that hearing loss will occur post illness.  Due to the illness itself and also the strong antibiotics used to treat it.  What is frustrating to me right now is NO ONE and I mean no one along the way ever told us that we would need to make Riley's hearing a priority immediately after she had recovered from the infection. Again, another reason I could have really used a manual!  I am praying we still have time or that Riley is one of the rare cases that doesn't have cochlear ossification because I don't want to have to live the rest of my life thinking we missed something for Riley, at any point.  So we wait and let these appointments come, go through the steps needed to help Riley and hope for the best.  It is possible if all goes smoothly (I know what really ever does) that Riley could have the cochlear implants by August!

Today we had an appointment with Dr. Irwin.  You all know my love for her so it was a good morning.  Riley has started doing a sort of scissor movement with her legs and has been pointing her toes a bit more but, it's not too bad at this point.  Riley was a pointy toed baby pre bacterial meningitis so it's not abnormal to see her like that however due to the CP it is something we need to stay on top of.  Dr. Irwin recommended Botox and once we get approval Riley will get three injection in each leg to help her muscles.  Now if she could only share a bit with her mama!  Riley is still off of the baclofen.  No need to put her back on right now.  Her tremors have all but stopped and  it's still a victory I like to celebrate each and every day.  She'll keep Riley on the Valium for now twice a day and after the Botox we'll address it again.  Riley did show off her odd startle stare for Dr. Irwin and she agreed we need to see the Neurologist ASAP.  Our follow up appointment isn't until 8/15 so hopefully the doctor will return my call and either see us sooner or advise us what to do/watch for.

Yesterday, I needed to delete some photos from my phone memory because it was so full and started scrolling through all of our old pictures.  An emotional trip down memory lane.  It reminded me that Riley is still the little girl she was in those pictures.  When a glimpse of her personality comes through these days it's hard not to be emotional.  It's those glimpses that show us that little by little Riley is coming back to us.  Where she belongs.

 

Fight on!

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

Ups and downs

Sometimes I wish Riley's illness came with a manual.  Something that helped guide us through this process.  Instead we learn through trial and error and a whole lot of research and reaching out to the network of resources we have. (Friends, others with similar situations etc.)  But, since there really isn't a manual we try to do our best for Riley.

Last Friday we had an appointment with an audiologist at the Providence Speech and Hearing Center.  Riley's hearing was tested using various devices and I sat with her in a room while the audiologist played various sounds to see what she reacted to.  Although, she didn't display the reactions he was looking for I could tell by holding her that she was having some sort of reaction.  Unfortunately, it wasn't a very promising appointment as far as what type of hearing ability Riley has and we were told she has profound hearing loss.  One of the things that can go as a result of bacterial meningitis is hearing and cochlear ossification is something that can occur as well.  cochlear ossification

 

The audiologist explained that although Riley had a clear path in her ear right now it is very possible, thanks to the meningitis, that cochlear ossification will develop and develop soon.  I asked him why this was and he said there wasn't a real study done to show why they just know it can.  Once this happens there is no turning back.  Her hearing, in whatever capacity she has right now, will be gone.  Back when we first landed at Healthbridge, one of the doctors Dr. Amelie, discussed with us the findings of these early hearing tests and the fact that in his years of studying hearing loss in young patients, it can come back.  He said he spent years researching hearing loss in infants at UCI and this was something he had concluded.  This has always stuck with me.

The next thing that was discussed was cochlear implants and whether Riley would be a candidate.  If she were a candidate and if she had these placed we could essentially save her hearing as whatever ossification may occur would go around the implant therefore not block her ability to hear sounds.

Cochlear Implants

I left the appointment pretty sad. All of this is so unfair to Riley.  I cried to Dave, cried to my mom and then realized I needed to pick back up and find what was best for Riley.  What could we do for her in this situation?

I requested a sedated hearing exam however the earliest they could get one on the calendar was July 29th.  At this point I feel like we are in a race against time.  After sending the audiologist the report from CHOC before we discharged and a lengthy discussion with him this AM I know she needs the cochlear implants.

While talking with my parents last Friday we all had a light bulb moment and my parents brought up the House Institute of Hearing.  I called and got Riley an appointment for next Monday.  First and foremost for a second opinion and also because I feel this is somewhere she needs to go.  When I told the audiologist our plans this morning he actually encouraged us to have Riley seen at the House Institute and immediately faxed me his test results to bring with us to the appointment.  So, hopefully this is the best route to go in order to not miss the window we have to get Riley cochlear implants before she isn't a candidate anymore.

Meningitis and Hearing loss

Now, I realize that cochlear implants are new.  I realize they are controversial.  But, I know in my heart that they are what Riley needs.  Period.

After Fridays appointment I was really looking forward to a weekend of family time around the house.  We went swimming Saturday and had Grandpa/Grandma Hopper and Jen & Casey over late afternoon for a bbq.  Unfortunately, Logan got out of the pool and started vomiting which then led to all the other issues you can have when your tummy is upset.  Thankfully, we had help around as our night nurse was sick as well and we had to go without a nurse for a few hours before one could get to our house to sub.  When it rains it pours!

                                                                    Post swim strut!

                                                                     Sicky Logan :(

Logan woke up Sunday morning feeling "himself" as he liked to call it and we thought we were out of the woods.  Yeah, not so much.  Mason and Dave were hit with the same fast moving tummy virus as were Grandpa and Casey.  And here I thought we had escaped flu season!

Yesterday, Riley had her appointment at the Center for the Partially Sighted.  What a wonderful place.  We instantly felt comfortable there and the thorough exam they gave Riley and open ears to listen about what has happened to Riley was comforting.  The ophthalmologist himself lost his sight a couple of years ago so he can relate to many of the issues we are facing. 

                                                              Trying on some glasses
Thankfully, Riley has sight.  Right now she tends to favor certain areas and move her eyes certain ways to see better but, she has sight!  They recommended glasses to help bring her vision within 16 inches of her face which will mimic the sight she would have had at 9 months old before she got sick.  We ordered a cute pink pair and they should be in next week.  It's appointment like these that I would have never thought of.  You know without that manual but, Yolanda the sweet, gentle, visual stim therapist set the appointment up for us.  For that I am so grateful!

Yolanda attended the appointment and now has some tools to use to help Riley even more.  We'll have to get a video of Riley responding to her commands like, touch the ball or touch the picture etc.  She has been a true blessing for Riley!

Today Riley had PT in the morning and did so well.  I am so proud of her and how far she has come.  The therapist even noted a significant difference from just Monday in what Riley can do.  She was lifting her head when needed and being an active participant.  Something we've wanted for so long.

                                                                            PT


Thank you to all of you for your words of encouragement and positive comments.  At one point this weekend I just looked at Dave and said how is this our life.  But, it just is and he reminded me to hold on to the hope we have in Riley and the progress she has made.  It really is amazing and something we take for granted sometimes because we are around her the most.  It's the pictures from a few months ago or videos of things that she is doing now that remind us that no matter how long the road is it is something we can do for Riley.

Until next time.  Fight on!

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