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!

Another week

We hope you all had a wonderful Mother's Day!  We spent the morning at brunch with my parents, Helen, Mark, Joanna and Alex at "The Home" as my dad calls it in Claremont.  It is a beautiful retirement community that Helen lives at.  The food was delicious and the company even better. 

 

 

We came home after brunch and while Mason took a longer then usual nap we headed to the backyard to enjoy the pool and cool off from the heat!  Logan has been asking for weeks now when it was going to be warm enough to swim again.  It's definitely almost summer and we know we'll be spending tons of time in the backyard swimming and enjoying our family and friends.  After Mason got up from his nap he got in the pool as well.  He loved it!  The only sadness of the afternoon was the fact that Riley couldn't join us in the pool but, we hope that one day she will.  I know she would love it as much as her brother's do.

Tuesday, I sat down to finish up a pile of paperwork for State/County funding we are trying to secure for Riley.  After multiple phone calls to State and County offices and shuffling through all of the paperwork over and over again I almost had a breakdown.  Well, actually I did.  After venting to Dave and calling my dad to get a phone number of someone I knew could help I was spent.  It's very frustrating when you need answers to questions and the people that deal with the paperwork every single day can't help you out.  Instead of finishing the paperwork I put it aside and finished it Wednesday knowing that the more frustrated I became the less I was going to get done.  It's just one of those things and drives home the fact that we, as Riley's parents, have to be her advocate in every aspect of her life right now and we can't let our guard down.  Like I told the ST's office yesterday, we are doing everything we can to make sure Riley gets all of the help she needs and we won't give up or accept anything less. 

Last Friday Riley had what we hope will be her last dose of baclofen but, it's not looking like it will be that way.  At least for now.  We took her back to see Dr. Irwin Tuesday morning because Sunday she started to shake, mainly in her arms, and we were concerned about it being a reaction to coming off of the baclofen or something greater like a seizure.  Thankfully, when she does this you can hold her arms and the shaking stops.  We'll watch her for the next couple of days and see how she is doing and then be in contact with Dr. Irwin to see how to proceed.  Like she said Riley does things on her own time and maybe she's just not ready to come off of the baclofen completely but, we do need to give her body a chance to see how she does without it for a few days.  As always, a visit to Dr. Irwin is refreshing and nice.  It's so different from other appointments that leave my stomach in knots for hours before and hours after.  I also asked her about a referral to an audiologist as we don't see the ENT until mid June and she was able to get that Rx for us.  We briefly discussed Riley's overall diagnosis and without going in to too much detail I left feeling much better than I had felt in the last few weeks since we saw her diagnosis in writing.  It's the little things, like a couple minutes to openly discuss why things are the way they are that really set Dr. Irwin apart from many other doctors.

                                                     Sleeping on daddy after a long day.

Yesterday we took Riley to her PT evaluation at Casa Colina.  The therapist Riley worked with was wonderful!  I can usually tell whether Riley likes someone or not within the first few minutes of her meeting them and she definitely was comfortable.  She recommends PT 2 x week for the next 6 months.  I am thrilled!  I was pushing to have her seen more then 1 x week and I am happy the therapist agreed.  She'll work from the top down to strengthen Riley's muscles and body.  In 6 months we'll reevaluate where Riley is and then go from there.  I know a ton can happen in 6 months so I am anxious to see how Riley responds to her therapies.  It's like having a newborn in the sense that Riley needs to learn how to do everything all over again.  Riley is already showing interest in therapy and trying to lift her head.  She just doesn't have the strength quite yet to do it on her own.  So goal #1 is to get Riley to lift her head during tummy time.  From there they will work on getting Riley to roll from back to tummy and tummy to back etc..

This morning Riley had her second in home ST.  We've requested that the ST work more specifically with Riley on swallowing and oral stimulation and it seems this weeks appointment went better then the first.  All of Riley's therapies are play based so she incorporated songs and toys as well.

We're getting ready for my bff's wedding tomorrow where Logan will make his debut as a ring bearer and I'll stand beside Leane as her Matron of Honor.  I am excited to see him all dressed up in his tux.  He was a trooper last night at the rehearsal and dinner and hasn't stopped talking about walking down the aisle all day.  It will be a wonderful day celebrating friends, family and love.  We're all looking forward to it!  Congrats Leane & Patrick!

Fight on!

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

Happy Mother's Day!

4 1/2 years ago on October 6, 2008 I became a mother and my entire world changed.  Everything I had ever thought about life and everything I thought I knew about life changed.

My views about my own mother changed.... forever.

There is no deeper love then the love of a mother.  There is no deeper heartache then what comes over you if something happens to your child.  There is no other title in this world that I am more proud of.

On February 28, 2012 our family of 3 grew to a family of 5 and my world was rocked again.  How could I love any other child more then I already loved my first.  Instantly, I knew that it was possible and that I could.  It just happened and I just did.

I've been blessed to have a mother who taught me everything about the greatest position I've ever been given.  My mom is someone who gives to not only her family but, her friends, her volunteer commitments and her community in ways you'd never think were possible.  My mom was and still is in my eyes the ultimate soccer mom who always did it all with a smile on her face and an unimaginable sense of calm.  My mom has shaped me in to the mother I am today because of the ways she taught me to be a mother even when I didn't know there were lessons to be learned.

After becoming a mom the world around me changed and I looked at every mom I knew differently.  In a good way, in an awe way, with a sense of respect. Thankfully, I am lucky to be surrounded by amazingly strong women who I draw my strength from each and every single day.

Moms who have lost children before they were able to hold them in their arms, moms who sacrifice each and every single day to give their children more, moms who chose their children and gave them a loving home, moms who balance a full time working schedule, moms who walk alongside their child as they fight a battle with any type of illness,  moms who spend 24/7 with their kids as a SAHM,  moms who have walked away from a bad situation to make life better for their children and moms who have paid the ultimate sacrifice and had to bury a child long before it was time.  Each of you that I know personally I consider my own personal heros.  I draw my strength from your stories.  I Fight On because you have taught me through your story that it is possible.

I am thankful today for my 3 beautiful children.  I am thankful for my own mother who has done more for me and for our family than I could ever explain.  She's the ultimate Grammie and one day the lessons I learn from her today will help carry me on to be a Grammie myself (at least I hope).  I'm thankful my children have Grandma Marie and Grandma Beverly to love them and care for and about them each and every day.  Their role in my children's life is one of the most important things to me.  My children are lucky to have hit the Grandma jackpot!  I am thankful for my children's Aunts who make them feel special year round.  I am thankful for our "friend aunts" who take the role on with amazing ease and help to raise my children alongside us without even knowing it.

I already have been given the greatest Mother's Day gift and that is another day with my 3 babies all together in our home.  I don't need anything more.  I mean maybe an extra hour of sleep and a few loads of laundry done and a nice champagne brunch and.... you know what I mean because we ALL need a break every once and a while and I'd be lying to you if I said I didn't ask for it!  But really, truly, I am happy to celebrate with my family.  The sleeping in will be a bonus and the laundry Dave will do because I just won't touch it tomorrow will be a nice bonus!

This Mother's Day I hope that each and every mother I know is appreciated, hugged, loved and thanked for all that they do.

It's because of all of you that I get through each day.  Mother's, no matter how young or old share a bond that can't be broken.

Happy Mother's Day Grammie
Happy Mother's Day Grandma Marie
Happy Mother's Day Grandma Beverly
Happy Mother's Day Aunt Becky
Happy Mother's Day Aunt Kara
and
Happy Mother's Day to you!

Love,
Megan

Fight On!

Finally

The last time I posted Dave had just been with Riley to the neurologist and we were pretty down just because what we were seeing on paper is in fact a lot to see when it pertains to your child.

However, putting that piece of paper away and focusing on Riley in real time is encouraging and promising so that's what we've done.  She still continues to amaze us daily.

Just this week she has started to suck on a pacifier when her nurse Trudy introduces it to her.  This morning she rolled from her side to her back while Dave was giving her a kiss goodbye before work.  She bicycles her legs.  Stretches her arms and yawns when she wakes up from a nap.  Looks at her brother's like they are the greatest things in the world when they enter a room.  With the unbiased input from her nurses that have just met her and the reassurance that what we are seeing is in fact something new and purposeful for Riley we Fight On.

The most frustrating thing about coming home has been arranging Riley's appointments and therapies and getting everything to fall in to place.  Dave mentioned Casa Colina to me again last week after the neuro appointment.  I believed that they did not take infants at all for any of the programs they offer.  I figured I'd call them one last time just to make sure I was correct.  No one had mentioned them as a possibility for services since we had decided to do inpatient at Healthbridge so I had just put them out of my mind.  Oh how I was wrong!  and I am so thankful that I was.  Casa Colina is an amazing rehab center located pretty much in our backyard.  After a few phone calls back and forth we will be going next week to finally have Riley's PT/OT set up.  For now, we'll go to the center and have her participate as an outpatient.  I think the riding in the car to her appointments  and new surroundings will be good for her.

Tomorrow, her ST therapy starts.  FINALLY.  And yes, I am yelling because I can't tell you how many times I have called over the last few weeks to make sure that this would all come together and now it finally is!  ST will be done in our house once a week. 

Thankfully, Riley's nurses have been great at working with her while we waited to get these therapies set up.  I finally went on an Amazon shopping spree and purchased a bunch of therapy equipment/aids that we can use at home as well.  Our goal is to learn what needs to be done therapy wise, teach others what needs to be done and work with Riley as much as possible.  This is the only way we know how to give Riley the chance she needs to rewire, relearn and rewrite her life story.

I feel relieved.  Aside from needing to let one of our regular nurses go due to some issues and still fighting with the State to get Riley approved for certain services I feel like we have a plan and that we are doing all that we can for Riley.

Tuesday, Trudy (Riley's morning nurse) and I took Riley to CHOC to have her chest xray done that was requested by her pulmonologist.  The new radiology department at CHOC is amazing and state of the art and clean.  I know I've become a germaphobe through all of this and I really appreciated the new clean feeling the department had.  It's the little things sometimes!  We're waiting for the results to see if Riley is responding to the breathing treatments she receives and if there has been improvement since the last chest xray.  Hopefully, it will be good news and we can then plan to have a bronchoscopy scheduled to look at her airway and decide whether or not a smaller trach would be okay for Riley.

We postponed Riley's fundoplication procedure until May 31st and will follow up with GI next week to see if they want us to even keep the surgery on the books or if we've conquered Riley's feeding issues...... For now.

Last Sunday we were able to take the boys over to Grammie & Pa Doug's for their annual Showcase House brunch.  I debated going at all, knowing we'd be leaving Riley alone with the nurse and feeling a bit sad that we wouldn't be all together as a family.  She was in great hands though so I am happy that we went. 

Brothers

 

While there a book was recommended to me Proof of Heaven.  I immediately went home and downloaded a copy of it on to my Kindle.  It's the true story of a Neurosurgeon who contracted a rare form of  bacterial meningitis/encephalitis.  I'm about 3/4's of the way through the book and have cried through most of the pages.  With Riley being so young she can't express to us anything that she has been through or what it felt like.  By reading Dr. Eben Alexander's words, especially the way he recounts those first days after being diagnosed I feel like I might be able to understand some of the things that went on for Riley.  I know now that her "waking" up on January 1 was very hard for her to do.  I hope, as Dr. Alexander did, that Riley feels the love and devotion we as a family have for her.  I know deep down that will be what carries her through.  I'll hopefully finish the book tonight.  I think that reading this book written by a Neurosurgeon, who himself would have told the family of a patient with a case like his that there was no hope, has fueled my hopes, prayers and dreams for Riley even more.  Thanks Gwen.

“Though no one can go back and make a brand new start, anyone can start from now and make a brand new ending.” – Carl Bard


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

Neurologist appointment update

For some reason neurology appointments always make us nervous.  I think it goes back to the PICU and all of the visits Riley had from a team of neurologists.  Some hopeful, some speechless and some not wanting to say anything really.

Yesterday, was the dreaded appointment and we both planned to go along with our nurse.  Unfortunately, I woke up in the middle of the night with what I am assuming was food poisoning from the night before so there was no way I'd be able to sit in a car for 30 minutes each way and then wait around a doctor's office for who knows how long.  This meant Dave went with just the nurse and I felt awful about it.

The appointment really didn't provide any earth shattering news but reaffirmed the fact that Riley needs as much therapy as possible.  They did however provide us with a piece of paper with where her diagnosis stands at right now.

Hydrocephalus ex vacuo
Epilepsy
Bacterial Meningitis
Cerebral Palsy
Developmental Delay- Global

That's a lot to see written in print and I'll admit Dave looked defeated when he walked in the door yesterday afternoon.  We had lengthy discussions last night about Riley and about how we support her.  When Dave asked the doctor point blank what this all meant and what it would mean for Riley's future he couldn't tell him it would go one way or another.  Basically, like we've always known she is little.  Her brain is young.  Only time will tell what Riley does. 

Every doctor we encounter can't give us an answer as to what Riley's long term prognosis is.  What they do do is encourage us to do whatever possible to get her the help we can.  This is why we try to stay as positive as possible.  This is why the stories we're told about similar cases mean so much.  This is why we have good days and bad days.

Riley was quite a stinker at the appointment and stopped bringing her eyes past midline for the doctor.  Right before he walked in she was looking all around the room.  During his exam she wouldn't move her eyes for him.  As soon as he left she went back to looking all around the room. Dave and the nurse told him all about how she moves her limbs and tries to swat at her trach and hme.  While with the doctor she wouldn't do any of this.  We joked that the doctor probably thought Dave was exaggerating what Riley does so thankfully we had the nurse there to provide him back up that it is in fact true! 

I look at our little girl and mourn the loss of her "toddlerhood" and dream about her future.  We'll continue to pray, hope and love her each and every single day.  What the future brings is up to her.

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