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!

5 months

There never seem to be enough hours in the day let alone week to get everything done and some days I feel like my head is going to explode from organizing and scheduling.  Between doctors appointments, multiple therapies, work stuff, paperwork, house things and life I've learned I need an organized calendar and home! 

My playroom organization helper

 

So my Google calendar that sends me reminders a zillion times a day has become my best friend.  I've also started going room by room and purging the house of anything we don't need, hello work paperwork from 2006, toys that never get played with and clothes we don't wear!  And it's freeing but, takes time.  I am trying to be patient and realize with time I'll get it all done I just don't know when.

 In between all of the craziness that has become our life I've also come to the conclusion that I really need "me" time devoted to working on my own mental and physical health.  So, back to the gym I go.  Thankfully, Logan fell in love with the Kids Club (Wii, slides, toys we don't have at home, and other kids to play with) so he's my new cheerleader as he begs to go to the gym.  I'm just hoping to keep up a weekly routine that allows me the time to get to the gym so my calendar now includes planned out time at least 4 days a week reminding me when I need to go. (And now that I've blogged about it I guess I better go!)  Because of the chaos I've also tried to disconnect more often from technology which is why I may go longer between posts.  I've realized that some of my priorities need to be shifted so that we can really get back on track and stay on top of things.  The paperwork, phone calls, bills and appointments that come along with Riley's illness are not going away and in fact are only getting crazier.  So bear with me.  I'll update as often as I can.

Riley has been doing really well.  Some days it's like watching your newborn do things for the first time.  This week she's rolled off of her side and has started touching her mobile on her own.  Little things but, huge things for Riley.  She started working with a therapist through the Infant/Visual Stimulation program last week and I think it has been really good for her.  She encouraged us to get Riley black/white toys because at this point, like a newborn, Riley can see very limited colors.  Black, white, red and orange.  She also told us that Riley's peripheral vision is what is allowing her to see right now.  Honestly, I am thankful Riley has her sight at all in any capacity.  Much like many of the issues Riley is facing, having at least some ability will allow us to support her and get her the most help we can so she can learn to live with her impairments.  We have an appointment at the Center for the Partially Sighted next week.  I am anxious for the appointment and hope they can provide more insight in to Riley's true vision and also help guide us in the right direction as far as what we can do to help her.  The therapist that is currently working with Riley will attend the appointment as well so she will have all the information she needs to continue to provide Riley with the best therapy plan.

Feeling gravity

Infant Stim Therapy

 

We'll also see an audiologist on Friday.  We know Riley can hear but, in what capacity we are not certain.  Talking with a few people who have children with hearing loss I know that early intervention will help Riley the most and hopefully, with time, either Riley's hearing starts to "wake" up or we can get her devices to help amplify whatever hearing she has.  Again, another sense that I am happy she at least has some use of (to the best of my mommy instinct knowledge) and we will support Riley in whatever way possible to enhance whatever hearing she already has.

We had a very busy holiday weekend filled with family, friends, bbq's and lots of pool time.  It was nice to have family and friends who are willing to come and hang out with us as going anywhere right now is next to impossible as a family.  Logan is now asking everyday when his cousins can come back over and when Gavin, Donovan and Aila can come swimming again.  Weekend bbq's were the norm for us before Riley's illness so being able to do normal to us things helps to get us through the week.

Hanging out with Uncle Scott

 



Silly boys

 



Hanging out with Grandpa Hopper

 

Picnic dinner

Popsicles!

 

Pool fun with daddy!



                                                        Floating with baby Mia!

 

Yesterday, Mason and Riley turned 15 months old.  It's funny how I vaguely remember Logan's month birthdays after a year but, have come to really appreciate them with the twins.  Mason is a ball of energy running anywhere and everywhere and really starting to show his determined personality.  He babbles non stop,  understands when we ask him to do something or tell him no (well he sort of gets the last one).  Some days it's hard to imagine what life would be like if both Mason and Riley were running around together.  We try not to dwell on the fact that they aren't doing things side by side.  I feel like we really only got 9 months as true twin parents and I hope that one day we'll have that feeling again but, I really don't know that we will. 

Cheese!

  

Monday was the 27th, it's been 5 months since Riley was admitted to CHOC.  She's come a long way from that December day but, still has a long way to go.

The last 5 months have been the fastest, slowest, most chaotic 5 months of our lives.  5 months ago if you asked me when Riley would be coming home I would have answered, if she comes home.  We just didn't know.  I know I try to be as positive as possible through this blog, mainly because staying positive is the only way I can cope but, I will admit it hasn't been easy the last 5 months.  When I get down or feel overwhelmed all I have to do is walk by Riley's room and I feel an overwhelming sense of calm and thankfulness.  It's a much different feeling than the feelings I had when Riley was still in the PICU and we were told she would never do x,y,z.  She's already starting to do many things that were on that list and for that we are thankful and hopeful.  It's what pushes us on. 

I can't predict what tomorrow will bring nor do I know what the future holds for Riley but, I do know that we are all together, we have an amazing support system and if we've made it this far we'll continue to make it. 

Thanks for your continued thoughts and prayers.  Fight On!

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

Happy Times

I can honestly tell you that the happy events and happy times that we have in our life really keep us going when we feel like we just need a break or time out from where our life stands right now.

This past weekend was one of those happy events and I really enjoyed being a part of Leane & Patrick's wedding.

It was a beautiful Southern California day.  Not too hot with a nice breeze and Leane was a stunning bride.

Mr. Logan did a fabulous job as the ring bearer and mommy & daddy were very proud of him.  It's hard to predict how a 4 1/2 year old is going to act when put on "stage" and aside from starting to unbutton his shirt in the middle of the ceremony and a few bored looks here and there he did pretty well!

                                                       Hanging out before the wedding.

I had fun getting to know some of Leane's friends that I may have met here and there over the years but, never really got a chance to talk to in any great length.  It was also fun having my hair and makeup done.  What girl doesn't love that?

After the ceremony ended the USC Trojan Marching Band was there to greet the bride & groom and play a few songs.  Every wedding needs a visit from the band!

Logan went home before the reception really got going with my mom.  We were able to enjoy a kid free night and we both had a great time.  Thanks mom!  And thank you Leane & Patrick for allowing me to be such a special part of your day.  Like I said in my speech I hope you always treat her like the queen she is Patrick and that you both have a lifetime filled with happiness and tomorrows.  Oh and Fight On! :)

Sunday Uncle Brad was in town again and was able to come over with Grammie and Pa Doug for a little bbq.  My mom's birthday is on Friday so we had a cake and sang to Grammie.  It was the perfect end to a wonderful weekend!

Logan ready to blow out Grammie's candle!

Explaining to Pa Doug what Skylanders is all about!

                                                                        Bottle time!

Monday we were back to our new normal and Riley had her 15 month check up with her pediatrician and had to get another shot.  We've been trying to space out her vaccinations just to make sure they don't react to any of the medications that she is currently on and due to the fact that Riley's little body has been through so much over the past almost 5 months.  She was weighed and measured as well.  Her % percentile charts still look much the same as they were before her illness.  She's our girly girl and usually comes in around the 15-20% percentile as far as height and weight.  Her head on the other hand is always in the 95%+ percentile.  What can I say all of our kids have huge heads!

We'll take her back in 2 weeks for a weight check and another shot.  Thankfully, Mason's 15 month appointment was already scheduled for two weeks from Monday and they were able to fit Riley in at the same time.  It will save us from running back and forth to the pediatrician.  We also talked to the doctor about increasing Riley's formula intake.  She's really on a very little amount of formula and I figure trying to increase it and watching to see how she reacts will be another tool we can use to make sure we don't want to proceed with her fundo procedure.  I also think she needs to gain more weight so we'll see what happens in the next couple of weeks.

Today my mom and Mason met me at Logan's school and we watched his end of the year gymnastics show.  I've been hearing about his show for weeks and it was so cute to watch Logan and his classmates bouncing on the mats and showing off for their families.  Mason loved seeing his big brother perform and Logan loved entertaining him from afar. 

Logan's new cheeseball smile!

Cheese with Grammie

Class picture!

Tomorrow morning Riley will have a visit from an intake coordinator for the infant stim program that will be provided to her through Regional Center. This is another piece of the therapy puzzle and I am happy the ball is rolling to start these services.

So far so good off of the baclofen so we are crossing everything we can hoping this means Riley is off of the medication for good.  It's been 10+ days and aside from a little shaking in her limbs Riley is more alert and has even smiled at us.  I've been waiting for her to smile for almost 5 months.  That's a long time to miss out on smiles from your baby girl.  A therapist along the way once told us that she had noticed that once a patient smiled their recovery seemed to really start to take off.  I've held my breath waiting for the day.  Patience is NOT my strong suit but, Riley is teaching me each day that I can have patience just by believing in her.

Although our days are chaotic and stressful and we don't know what tomorrow will bring we are thankful to have the family and friends that we do.  As I watched the coverage yesterday of the Tornado in Oklahoma I was reminded of how blessed we are.  I know that one of the answers that I often give when asked how we get through each day is that we have Riley with us and that makes each day a gift no matter which way you look at it.  My mind wandered to the what ifs last night and I had to quickly remind myself that each day we spend loving Riley and fighting for her is a day we were given that others don't get.  So Fight On!  Thanks for the love and support and keep the families in Oklahoma in your prayers.

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