Crazy Birthday Weekend!

This weekend was a weekend to remember for so many reasons.  Please bare with me as I recap everything!

It's no secret that my little man Logan turned 5 yesterday.  If you're my friend on FB or follow me on IG you are probably tired of all of my pictures and posts.  Sorry!  A kid only turns 5 once right?!?!?  And take this as a warning now that this post is long!

It's hard to believe it's been 5 years since our 9 pound 1 ounce baby joined us.  Logan was born on my Nanni's birthday.  She passed away a few months before Logan was born but, was insistent before her passing that Logan would be born on her birthday.  When I received Logan's mid quarter progress report last week and saw that Logan was getting an "O" in Bible I smiled because I know that is my Nanni coming through in Logan.  And if you knew my Nanni you'll understand that she is smiling down on us because each year as we celebrate Logan we remember how she predicted Logan's birthday and was right :) and remember her!  She was a lady who didn't want to be forgotten!!!

The birthday boy!  A whole hand!!!

 

We started off the weekend attending the morning flag salute and prayer at Logan's school on Friday.  We knew Logan would be getting a birthday pencil and get to have the whole school sing him Happy Birthday so it was something we definitely couldn't miss!

The picture says it all!  Pure joy.

After running around town like a crazy person all week we started setting up for Logan's party on Friday night.  Thankfully, Jen Jen and Casey came over to help.  Without Jen Jen there is no way I would have completed everything!  What can I say I tend to have a bit of ADD when it comes to getting all of my ideas to come together for something!


All of the labels and birthday banner came from Shaye at Couture Celebrations OKC.  Lifesaver!!!  And perfect addition to the party! Couture Celebrations OKC

 

The only picture of the cake!  It collapsed before we got a chance to sing to Logan.  Just another one of the behind the scene things that went a bit awry!

Of course we had Salsa Sweets cookies!  The minis were perfect to use as toppers on the cupcakes!  Thanks again Nicole!!!  Loved them as usual! Salsa Sweets

 

Logan's party was a huge success.  As I listened to Logan talk to his Grandma Montana (Dave's Mom) and declare it was the best birthday yet I knew my mission was accomplished.  All I wanted was for Logan to enjoy his special weekend and day.  Logan has been through SO SO much and often times has to sacrifice things for his sister because we really can't predict what each week or even day is going to be like.  And, he is the absolute best big brother and cares so deeply for Riley.  It blows me away sometimes.

Our bat family!

The one the only amazing Jen Jen!!!

Just chillin!

Uncle Brad and Molly chatting with Riley

Another casualty of the party.  The improvised Bat Mobile had a car accident while being hung!  The kids still enjoyed the candy.

Baby Luke!  Our adorable nephew he makes me smile.  His giggles and coos are the BEST!

Cousins!

Nap less Mason having a great time!

Happy 5th Birthday Logan!

Saturday night we collapsed in bed from shear exhaustion.  My phone rang at 11:30, right as I was in that deep sleep mode, and it was Riley's nursing company letting us know we were going to be without coverage overnight.  Like I said we never know what the day is going to bring.  I was (perhaps I still am) furious over this because I had called multiple times last week to make sure we'd have coverage this weekend so that things could proceed as planned and we didn't have to add in another worry.  So I grabbed my pillow pulled out the sofa bed in Riley's room and had a little sleepover with Miss Riley.  It was another sleepless night for me trying to make sure Riley's sats were okay.  Our new nurse arrived at 7 and thankfully the boys slept until 730ish so I was able to get a quick nap in before we started Logan's actual birthday festivities.

Each year on the kid's birthdays the "Birthday Fairy" visits and decorates their rooms with balloons and banners.  Logan has talked about the Birthday Fairy for months.  The smile he had when he saw what the fairy had done was priceless and the balloons and confetti provided hours of entertainment for the boys!

Hey look, the balloon fairy came to visit!

We continued the day  by heading to breakfast at a restaurant of Logan's choosing.  He overheard another table celebrating a birthday and made sure to let our waitress know it was his birthday.  They brought him a slice of chocolate cake with a candle and sang to him.  Logan thought it was the coolest thing ever!

Cake for breakfast???  Why not, it's my birthday!

We spent the rest of the day hanging out and tearing packages of new toys apart and then got ready to head to the Laker game with Grammie and Pa Doug.  Since we only had 4 tickets Dave and Mason got ready to head to Janet and Mike's to celebrate Tia T's birthday.  While getting ready I had an odd feeling about leaving Riley home with the nurse.  She was brand new and just didn't seem to really get Riley's quirks and schedule.  We both explained multiple times what to do if x,y,z happens and before I walked out the door I reminded her where our numbers were on the board if she needed anything.  The plan was to only leave her alone with Riley for an hour or so.

Logan and I met my parents at their house and loaded up with them to head to the Laker game.  We got on the freeway and Dave called.  The nurse had called 911 and they were rushing Riley to Pomona Valley (there are multiple reasons that I won't elaborate on that this upset me).  So, my dad turned the car around and dropped me off and Logan headed off with my parents to the game. 

Ready to watch the Lakers!

Another picture of happiness!  Loved his first Laker game!

I raced home and met Jen Jen and Casey (who came to the rescue once again!!!!) at our house.  They followed Dave to the hospital and brought Mason home.  We're pretty used to the ambulance ride/ER gig at this point and once we knew why the nurse called 911 (due to a normal to Riley seizure) our mission was to get out of the ER ASAP.  As I told her multiple times it's better to be safe then sorry.  And really I know this.  I'd rather have a nurse call 911 and things end up being okay then to even think about the what if's.

Dave got to the ER just as they were getting ready to insert an IV (normal ER protocol) and was able to stop them.  After a chest xray and discussion with the doctors/nurses Riley was ready to come home.  It was perhaps the fastest ER/ambulance experience ever.  We were back home at 7pm, an hour and a half after the 911 call was placed.

So the weekend didn't quite end as planned but, Logan still got to enjoy the Laker game, ended up on the big screen twice and passed out on the couch 2 seconds after walking through the door.

I know our life will never be "normal" again.  This is our new normal.  I am however  just beaming with happiness this morning that we were able to make the weekend ALL about Logan and make him feel so special and like a normal 5 year old.

Thank you to everyone who celebrated with us.  And huge thank yous to Jen Jen, Casey, my Mom (AKA Grammie) and I suppose I should thank Dave too!  Without their help all of my crazy ideas wouldn't have come to fruition.  And without the help of Salsa Sweets and Couture Celebrations OKC the party would have looked like a Pinterest fail!  Planning Logan's party was a nice distraction from what we deal with day in and day out.   

And now we'll get back to our regularly scheduled life....although I'm not sure that really exists!

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

 

October!

It's hard to believe that it is now October!  We are going to be busy this month.  Logan's birthday is this weekend and the CHOC Walk is the next weekend.  We have many appointments this month, sporting events, a concert and we'll end the month with Halloween of course!

Last week Mason had a double ear infection on top of cutting 6-8 teeth.  I've lost count!  I often find him chewing on whatever he can get his hands on!  We were happy when Friday finally arrived but, knew we'd be busy. We had a ton of house stuff that needed to be done so we would be ready for Logan's party this weekend.  In the midst of all of that we were without a nurse overnight Saturday and Sunday.  When it rains it pours. 


Love this silly kid teething and all!

Helping clean the backyard!  Logan is thrilled :)

Yesterday I was up at 4 am worrying about everything that needs to get done and making sure I got Riley her meds at 430 am and feeding at 5 am.  Of course Riley takes after mommy and slept through everything!  I was able to get 3 loads of laundry and a cycle in the dishwasher done before the rest of the family was up so that was a plus.  As Dave joked with me about the beauty of the couple hours before the sun comes up I briefly considered making it a more regular habit of getting up early until I remembered how much I love my sleep!

We're still in a holding pattern so to speak in regards to the Cochlear Implant surgery and I am getting impatient.  I know things will all work out but, not having something in the calendar and not prepping to actually have the surgery done is driving me crazy.  My unorganized self that has now become attached to my email and google calendar is cringing! 

At the end of every month I look at next months calendar and take in what we are up against.  October has us following up with the Neurosurgeon, Neurologist, Pulmonologist, GI, ENT and Neuro Rehab doctor along with an EEG, lab work, botox and hopefully a bronchoscopy.  We also need to schedule a swallow study.  Looking at all of that exhausts me at first glance and then I start to add in therapy appointments, Logan's school activities and life events in general and I feel out of breath.  This is where the help and support we receive really saves us.

October has also always signaled to me that the end of the year is fast approaching and usually I feel like I blink and it's Christmas.  I'm hoping to be able to fit in a trip to a pumpkin patch with the kiddos again this year and hopefully we can take some time to stop and appreciate the changing season (if it ever decides to really change!).  I have a feeling though that before we know it the calendar will change again and it will be November!  I seriously wonder where the last year has gone....

Last Friday Riley did SO well in PT and had me grinning ear to ear.  She was sitting with slight assistance from her therapist who supported her ever so lightly in her trunk but, she was holding her head all on her OWN!!!  I sent Dave a picture and he was just as proud.

Riley sitting up in PT!

Sunday while hanging out together on the couch I tested Riley again and she was able to hold her head up while I held her arms and pulled her up towards me.  It made my day.  These milestones make all of the hard work and worry worth it.

This weekend the twins also turned 19 months old.  I used to lose count of the month birthdays but, they mean so much more to us now.  Sometimes the day brings back happy memories and then there are the times that I start my "it's been xxx since" and "Riley got sick xxx months ago" or "when the twins were xxx months old they did xxx."  And then I snap out of it and realize I need to get back to living in the moment.  It's the only way to really get through the day.

Trying to get a good month birthday shot was impossible!

I still have a long list of to-do's before the big 5th Birthday Batman shindig on Saturday.  I always run around like a crazy person the week before parties and I am lucky that this year I was able to enlist the help of a few special people to help put the finishing touches on the day.  I can't wait to see what arrives in the mail this week!

Before I go though I have to thank, Pinterst Told Me To and Sheaffer for an amazing gift that I am receiving.  On a whim on Friday I entered her contest for mom's of special needs children. 

Pinterest Told Me To

 

I really did not think that I would ever win and when I woke up Saturday morning to her email saying I'd won I was giddy.  Once I get some time to use the Loft gift card I will have to share what I am able to get.  For a mom who's wardrobe additions recently have been from Target and Old Navy, because really who has time to make it to the mall, I am excited to spruce things up in my closet!  Thanks again Sheaffer!  It really came as a complete surprise.

I also have to share the success that our team is having with raising funds for the CHOC Walk.  I initially set a goal of $2500.  As of right now we are up to....... $8670!!!

CHOC Walk Team Riley

 Much of that is thanks to Pa Doug who has been telling Riley's story to anyone who will listen and drumming up donations.  Uncle Brad and Hannah have also raised quite a bit for the walk, thank you thank you thank you!  It's quite possible that by the day of the walk we will surpass the $10,000 mark!  It makes me teary just thinking about it.  So thank you to all of you that have donated whether it be through our team page or through our individual walkers.  It makes this mama happy to know that there are so many people pulling for us in every aspect of our life.

We hope you all have a great week!

Fight On!

Love,

Dave, Megan, Logan (the almost 5 year old!!!), Mason and Courageous Riley

The good... the bad... and the ugly

So the good news is that Miss Riley DOES NOT need a shunt.  The entire probe experience really wasn't all that bad.  Riley was a champ and took it all very well.

It was an early morning!  Riley's look says how we all felt!

Pretty piggies pre probe.

We were at CHOC very early Thursday morning and the procedure took less then 45 mins from start to finish.  We were a little shocked when we went back to the recovery room to see the giant probe coming out of her head.  I was envisioning a small thing.  We nicknamed Riley the unicorn while she had the probe in.  The actual size of the probe was teeny tiny but, the entire machine was much bigger!

What is this thing???  We were promised that it did not hurt.  It just looked SO uncomfy!

REsting in the PICU.  The machine to the right monitored her pressure.

 

Riley was monitored on the PICU floor.  It was nice to be in a familiar environment and NOT be in a life/death situation.  Because really that is when you end up in the PICU.  It was a gentle reminder of how far we have come and also a reminder to count our blessings and be thankful for many things.  I've said it before but, you just don't talk to other parents when you are in the PICU.  It's sort of an unspoken rule.  Dave did speak with a mom (as she engaged him) who has a son that has leukemia and came down with the flesh eating bacteria after receiving a cut on his leg.  He's been in the PICU for 3 months fighting for his life.  We remember how it felt to be in the trenches praying for a miracle and my heart aches for all of the parents standing beside their children praying, hoping and waiting.

The PICU is home to some of the sweetest nurses.  We've met many and really they are all angels.  They remembered Miss Riley and some of them came by to peak in on Riley and see how big she is getting.  As one of the attending doctors said to a group of med students during rounds on Friday, when Riley arrived in the PICU she was on deaths door.  No one really knew what her outcome would be and if she would make it out of the PICU.  Often times once a patient leaves the floor they don't know what happens to them.  He was impressed with her progress and reminded Dave as he has said many times before.  It just takes time.  Dave promised him that in a few years Riley will come back to visit and whether she's walking with a limp, a cane or a walker she will walk on to the floor to say thank you.  It's what we often dream of being able to take Miss Riley to do.

Friday evening the neurosurgeon rounded and decided that the levels that Riley had from the pressure test were normal and that the probe could come out.  He seemed shocked.  Heck I still am.  And something tells me that even if she doesn't need the shunt now she'll probably end up with one at some point in the future.  Just a feeling that I have.

No more probe.  A few stiches and a tiny bald spot.

Finally a bath!

The bad or rather sad to me part of all of this is that Riley still has fluid on her brain that is taking up areas of dead brain tissue, hydrocephalus ex vacuo.  We've known this for a while, doesn't make it any easier.  The only thing I can say and something that has been repeated to us over and over again is that the young brain has plasticity and even if these "dead" areas exist (which they do) it doesn't mean another part of Riley's brain can't pick up the slack.  Even now as Riley is rolling from side to side, holding her head up, engaging in cartoons, interacting with her brothers and reaching for toys or her mobile we know she's reconnecting.  It's as if you can slowly see the lights turning on.  It can happen and it does.  "It just takes time....."  

Since we were already inpatient and had a bunch of time to kill we had the pulmonologist that was rounding this weekend come by to check on the pressure in Riley's trach.  It was on the recommendation of the trach nurse, who is so so helpful, and I am happy we did.  Riley has not been able to use her passy valve (allows Riley to make audible sounds and talk) and it's something that is important to us to be able to put back on.  But, the pressure (or air passing around the trach) needs to be at a certain level for this to happen.  When the RT's tested Riley the pressure again was way too high.  As a result it was recomended that we have a bronchoscpy sooner rather then later to check to see if there are any granulomas (scar tissue).  So we'll head back to the pulmonologist on Friday to have this checked out.

We were able to come home Saturday mid morning and I know Riley was happy to be back home!

Sleepy girl ready to go home!

While all of this was going on I was in email contact with the doctor and audiologist at House.  Saturday evening I received an email that I was hoping would never come.  For one reason or another the doctors and team at House don't believe that CHLA is the place to have the cochlear implants done.  I'm pretty upset about this and believe there may be other underlying reasons why this is the case.  Which is most likely fueling my frustration.  It's times like these that you realize that no matter how on top of things you are, no matter how diligent you are are about paperwork and the overall process it doesn't guarantee anything.  And I feel duped.  We're basically back at square one.  Yes, we knew this was a possibility but, it doesn't even appear that Riley's case was presented to CHLA which means we wasted weeks waiting for an answer.  But hey it's not their child so I guess I can see why the urgency and importance just isn't there.  In all honesty I'm kicking myself for even making the move to go there as my next phone call today will be back to the audiologist at Providence to see where we go from here.  We'll have a letter from the doctor at House (whoop dee doo) that we can use to help move forward with an eventual surgery but.... we've now lost tons of precious time.  Sometimes all of these hurdles really get to me.  Now, I just hope that we don't have to re do any of the exams (MRI, sedated ABR) and that based off of what we have so far we can still move forward ASAP.  We'll see. 

We're back to the "norm" this week and Riley will be back in therapies and working as much as she can.  In between the craziness of the week I hope to finalize plans for Logan's 5th birthday party in a couple weeks.  It has sort of snuck up on me!

Thank you for continuing to think of us and support us through the good, bad and the ugly!  If it's not one thing it's another these days but, like I always tell people, we've learned to just take things one day at a time!

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

Trying to thrive

"Make up your mind that no matter what comes your way, no matter how difficult, no matter how unfair, you will do more than simply survive. You will thrive in spite of it."

I saw this on facebook yesterday.  Posted by a friend who has been down a similar road as us.  And it just spoke to me.  I think that this is what we've sort of done naturally.  I mean yes there are tears and fears and days that leave us questioning everything we're doing or have done but, for the most part we're okay and perhaps better then okay.  Because it's a choice we've made.  It's what we do for Riley, for her spirit and her mental health and it's what we do for Logan and Mason.

With that being said we've been busy busy busy since coming home from the hospital.  Trying to thrive and soak up as much time as we can with the kids.  We're also getting ready to head back to CHOC on Thursday for the ICP.  For 48 hours.  At least this time we are ready, prepared and have a plan in place.  Makes it much much easier.  Although having to be there at 530 am will be a challenge!

I've been second guessing this procedure for the last couple of days.  Thankfully, I have Dave.  He reminds why we're doing this and also reminds me what the doctor said at the appointment to discuss this.  It has to be done.  It's for Riley's good but, it doesn't make me any less nervous or scared.

Just yesterday Riley did so so well in visual therapy and physical therapy.  So well that I drove away from home and immediately called Dave to question having this procedure done again for the millionth time.  I just don't want to rock the boat although I know it's already rocking.  Even if it is decided Riley does not need a shunt we still face a series of procedures to check on her trach and the cochlear implant surgery.  So.... whether we like it or not we need to toughen up and stay strong for Riley and the boys.  They need to see the confidence in our faces with each of these events as they come up in the next few weeks.  I see a noticeable difference in all 3 when we show them through our actions and words that everything is going to be okay and that this is just part of the road we're on together.

This weekend was nice.  We were all home together.  Logan had his first friend birthday party for one of his buddies in his K class.  It's always fun to see the kids interacting and playing with one another while their parents are present as well.  Most of Logan's friends in K also attended preschool with him so they all know one another and tend to get along fairly well.  They are all 5ish though so you can imagine what that means!  I really think it takes a special individual to teach preschool or Kindergarten.  I know I couldn't do it!  But, all of Logan's "buddies" are sweet kiddos with wonderful families so Saturday was just a reminder of the wonderful community Logan is a part at school. 

Saturday afternoon our nephews Drew and Tobin came over to spend the night and hang out.  Drew, who just turned 18 (and now I feel OLD), is a wonderful babysitter and used to watch Logan for us when he was younger.  He stayed with the boys and we went to our neighbors house for a party.  It was 4 houses away, Riley was in good hands, the boys were in good hands and it was nice to get out for a little bit, together!

Sunday we decided semi last minute to take the boys to the LA County Fair.  I really didn't want to miss out on going as Logan loves the fair and so we took advantage of a free afternoon to go eat some greasy food, play overpriced carnival games, cringe at the rides that looked like they were missing a screw and people watch in one of the best venues to do so.

One of the many pictures Logan had to take in these photo prop stands throughout the fair.

Mason's first carousel ride.

Riding the rides!

Playing games with daddy.

Not even out of the parking lot and he was OUT!

Monday we were able to participate in the annual Tommy Donfrio Charity Golf Tournament.  And no, I did not golf.  My pretty pink clubs still decorate the same corner in our garage that they have since the day after I got them.  It's an event that we love being a part of put on by family/friends that are so dear and wonderful to us.  And in honor of a man that we are both blessed to have known.  We're just happy that things worked out the way they did and we were able to be there.  Dave's happy he survived a round of golf and even took 2nd place!  Logan claims that the 1st place team must have cheated. (He always thinks daddy is the best at everything!)  The day ended with a wonderful dinner and silent auction.

With Jen Jen!

Yesterday was crazy.  I took Mason with us to Riley's PT.  He's never been, for obvious reasons.  Try corralling an 18 month old in a room full of new to him toys.  I think that will be the first and only time we do that.  I did like that he could see what Riley was doing and the cheers he gave when she rolled on her own were priceless.  He may be Riley's biggest cheerleader!

In the afternoon we headed over to my parents house to finally try and get some shots of all 3 kids together.  I can laugh about it now but, man the boys were definitely making Julie work for a decent shot!  Riley of course was an angel.  So relaxed and happy to be out on the grass in the cooler early evening weather.  We're excited to see what Julie was able to get.  Trust me when I say it was not an easy task trying to capture these 3!

Logan may be crazy at times but, he adores his sister.  Blurry pic from my phone but, it really captures the love he has for her.

Perfect shot.  Blurry as it's from my phone again.  Logan trying to boss Mason around and holding Riley.  Mason trying to get to sissy and Riley looking at her brothers like they are crazy....

The pretty princess.  Taking a break from pictures with mommy.

Pretty much captures Mason.  He would not stop at all!

I'm going to include the link for the CHOC walk again.  I know the next few days are going to be busy and I don't want to forget to remind you to sign up if you haven't already done so.
Team Riley

I also have to point out that Hannah (our wonderful babysitter) has blown me away with the money she has raised for this.  I went to go get the link again for today's blog and saw this.  Thank you Hannah!!!

Hannah Seeker

$320.00

I know everyone always asks us (and those that don't probably wonder) if we're doing okay and the answer really is yes.  At the end of the day, week, month we remember that we have each other.  We have another day together.  And as silly as it sounds it helps us to continue to fight for Riley and get out of bed each day.  Seeing all 3 of our kids together, watching the kids interact with one another and seeing the pure joy in Logan and Mason's faces when they talk to Riley or are around her makes the fight worth it.  Heck watching Riley's face light up when one of her brothers walks in the room is proof enough that life is ok!  Without Riley we'd all be lost. 

Thank you for the prayers and thoughts and kind wishes.  As always, we Fight On!

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

HOME!

We're home!  Much to our surprise. 

We met with Riley's main neurologist and another neurologist who we had seen back in January yesterday.  We also met with a neurosurgery resident and the unit pediatrician.  Lots of talking.  Lots of memories of the past.  I can't tell you how badly I wish I had a cheat sheet to hand every doctor we encounter. (And I've mentioned this before so I think this time I really will make one!)  Thankfully, this time, we were placed in the neuro unit.  Makes it much easier to discuss meds, disposition etc. when the nurses deal with similar patients all the time!

We were supposed to have a follow up visit with Riley's neurologist today (if life had proceeded as planned).  We were expecting a med adjustment.  Riley has grown.  She's longer, heavier and older.  Little did we know that Riley would dictate to us when she was ready to have her meds adjusted.  It appears the seizures were to be expected.  It wasn't if they would occur but, when.  Makes you feel real secure as a parent.....


I had a feeling this was coming.  I had planned to be out of town last weekend but, cut it short by one night because Riley's neuro stats were concerning.   Her seizure activity had steadily increased and although they were "little" seizures they were still seizures.  I've read of cases where seizures in CP patients get out of control and there in no turning back.  Deep down I was sick thinking about this possibility.

Riley rolled in to this sleeping position and got comfy so that.....

 

She could take a nap looking at daddy yesterday!

Infection wise Riley was cleared.  Although our discharge paperwork noted pneumonia. (Have to love hospital billing shenanigans)  She did have a heavy dose of antibiotics but, did not exhibit any symptoms of infection other then the seizures.  And her lungs are clear.  All good things.

Listening to sissy's ?? heart, stomach?  Logan loved the stethoscope the nurse gave him!

 

We were told we would be going home today.  Grandpa Hopper came down yesterday afternoon so I could head home to get some clothes and see the boys before staying with Riley.  On my way home, in traffic, I called Dave to make sure he checked with the nurse before he left to see if the neurosurgeon would be coming by.  Well, not too long after the resident came by and said we were ready to go home.  We were not prepared!  Riley had been seizure free for 24ish hours and they would not be rushing the brain pressure probe.  So we will go back next week for a 48 hour study as an inpatient, again.  At least we'll be ready for this hospital stay!

Since I was already home I was able to grab what we needed to bring Riley home and a carpool buddy, Logan.  We had a little snafu on the freeway when a car seat strap was somehow caught in the door and got tied up in my tire.  Thought we had blown a tire but, no just tore the new leather in my car.  We were both pretty shaken before we got back to the hospital.  It was just one of those days.

Riley is stable.  Sleepy though.  Her phenobarbital has been upped and we have new procedures for seizures.  Her phenobarbital levels are higher then they have ever been and should ward off any seizures.  Thank goodness.  We expect Riley to be sleepy as she adjusts to this new dosage but, we're still proceeding with therapies and daily routine.  Riley needs it!

We had an interesting discussion with the trach nurse who first explained to us what Riley's trach would entail and how it would function as she always checks in on us when we are inpatient.  She was surprised we aren't there more..... Uh yeah, no thanks.  Although it was a reminder that hospital stays are an inevitable part of Riley's life.  It also made me think about the upcoming flu season.  We're super vigilant about germs and cleaning and hand washing so I suppose we are going to have to be even better about it.  It's hard to control germs when you have nursing care 24/7 (many different people in and out of your house) and a child in Kindergarten (the germ factory as we like to call it).  So we'll proceed with caution for the next few months.  Unfortunately, any little cold or temperature can trigger a seizure for Riley if we're not careful.

Thank you for the prayers. support, thoughts and love. They really do work! It makes this journey much easier to know that others care about our family and Miss Riley.

We're happy to be home.  Logan cheered when he heard Riley was coming home last tonight and I know we all slept much better under the same roof.   We're mentally, physically and emotionally exhausted.

Just because, a couple pictures from the day before Riley headed to the hospital.  Mason REALLY missed Riley.  He kept walking in her room wondering where she was.  In some ways the older Mason gets the harder this all gets.  He understands much more then he did 9 months ago.

He LOVES his sissy!

 

The bond these two share is still strong!

We're so lucky and blessed with all of you and an amazing family that steps up whenever these situations arise.  It's goes without saying that it doesn't matter how old you are you always need your mom.  I know I've mentioned it before but, my mom is Super Grammie and comes to our rescue whenever she's needed, rearranging her schedule and going with the flow when it comes to the boys and their activities and craziness! 

We can also always count on Grandpa and Grandma Hopper to step in whenever they are needed and at a moments notice!  It makes this all a little easier to take with such wonderful support surrounding us.
 
Thank you Grammie and Pa Doug and thank you Grandpa and Grandma Hopper!  We couldn't get through these hiccups without you! 

Fight On!

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

Riley update

Today started out very normal.  I was editing my post with updates on our visit to the neurosurgeon yesterday when I received a text from Riley's nurse that Riley had a seizure.  Followed by a longer seizure.  Ativan was given and I placed a call to Riley's neurologist's office.  Something just worried me this time.

A couple of hours later I received another text.  Another seizure.  If this happens we give Riley a stronger Ativan like drug (Diastat) rectally and head to the ER per the neurologists instructions. (We've never had to give her this until today)  I had discussed with Dave after the first incident that if any other seizures occurred today we would head to the ER.  So we were semi prepared but, hoping we didn't have to.  These seizures have started to come more frequently and suddenly.

We got to the CHOC ER in record time.  Riley's nurse even timed it and was impressed.  I promise I wasn't speeding!

We got checked in started going over the normal questions and got settled.  And then Riley had another seizure.  Thankfully, the attending ER doctor was able to come in to witness it and I had already spoken with Riley's neurologist so she was able to work with him on what now.....

It was pretty evident at this point we'd be admitted.

Yesterday at the neurosurgeon we had agreed to do a brain pressure study for 48 hours next week as an inpatient at CHOC.  Now, I am hoping this can be done now.  It's silly to me to wait a week.

Riley did show some sort of infection on her xray.  Pneumonia and sepsis have been thrown around.  She recieved a dose of antibiotics and now we wait to see what her cultures show.

I met Dave and Riley back at CHOC after grabbing stuff from home for them and walked in just as Riley had finished another seizure.  Again, witnessed by the resident on the floor.  We went through a zillion questions again and a CT scan was ordered.

Riley was amazing during the scan and we settled back in her room to wait for results.  Riley's feeds were still being withheld so we were unsure whether a surgery would be tonight or not. 

We were both thrilled to be back at CHOC!

I finally headed home when we knew that wouldn't be the case tonight.  The CT scan shows no change from the MRI from 8/7.  In other words it's not an emergency situation that requires someone to be woken up.  (Like a grumpy neurosurgeon :))

So now we wait until the morning to see what's next.

I'm home with the boys and Dave is at the hospital with Riley.  I'd like to say we're used to this by now but, really we're more used to all being home together.

I missed Logan's first back to school night tonight and feel horrible about it.  My mom was a trooper and life saver today when all hell broke loose and my IL's saved the day by relieving her before I could get home.  It truly takes a village.

We'll wait and see what tomorrow morning brings.  For now I am ready to collapse in bed with Logan who has taken it over along with 20 stuffed animals and blankets.

Mommy was much more prepared this time and brought all my goodies!  Including our new Memo quilt!

We appreciate the prayers and support.  Riley is such a trooper.  She was trying to pull off her IV and kicking at the nurse when she was checking on her.  Good to see her feisty but, much harder to keep her happy as a patient when she knows that she's going to be poked and prodded!  She has the fight in her though and will continue to Fight On!

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

A punch to the gut

Sometimes I feel like I really have a love/hate relationship with the Internet and google.  The hours I've spent researching things for Riley and trying to stay on top of her illness and everything that goes with it can be overwhelming.  But, those hours have also allowed us, as Riley's parents, to be really educated about things that were so foreign to us and have given us the tools to be Riley's best advocates.

I mentioned in the last post that we were going to seek out a second opinion on Riley's hydrocephalus.  Mainly because her MRI from a few weeks ago caused the doctor at House to question whether she needed a shunt or not.

Tuesday Riley had her follow up appointment with Dr. Irwin.  I mentioned to her what my concerns were and she agreed to talk to Dr. Loudon, a CHOC neurosurgeon, about our concerns and have him review Riley's recent MRI.  Trust me when I say that Dr. Irwin really is such a blessing for our family.  Sometimes explaining why you think x,y,z to a doctor can be intimidating.  I mean I don't want to sound stupid or silly and Dr. Irwin has always listened to what we've had to say and has always steered us in the right direction.

Dr. Loudon reviewed Riley's case and agrees that Riley needs intervention.  His office just called to set up an appointment.  I'm assuming that means a shunt.  We'll be seeing him Monday afternoon in his office.  I'm sort of numb right now.  I don't really know what this all means or what he is going to have to say on Monday.  I hope and pray that he is able to help Riley.  And that we've caught this without any other significant damage to Riley's little brain.

I can't tell you how strong my mommy instinct was on this one.  I just knew.  Now I am hoping that  whatever intervention is done is beneficial for Riley in the long run.  Please say a little prayer for us on Monday or send all of your good thoughts.  This is going to be one of the toughest appointments we've had since being discharged from the PICU.

In other news... we've picked the company we're going to us for Riley's CI's.   We chose Cochlear and the type of implant that Cochlear provides is one that looks like a hearing aid over the ear with the attachment to the magnet on Riley's skull.  We chose this one for a variety of reasons and really think this company was best for Riley.  We're still waiting to see if CHLA is willing to take her case and now with the intervention needed from the neurosurgeon we may be looking a bit farther out for the CI's. 

We had a great long weekend together and Logan is really enjoying Kindergarten.  He's even begging to stay at daycare after!  It makes it much easier to focus on other things during the day knowing that he is so happy.  He's in good hands.

I'll leave you with a few pictures from our weekend.  I'm out of words right now and just ask that you keep Riley in your prayers and thoughts.  And as always we continue to Fight On!

Logan being a model at the mall on Saturday!

 

 

Mason playing at the Sacco's on Sunday

 

 

Daddy surprised us on Tuesday with a visit to PT!  Best daddy ever!

 

 

Doing homework together!

 

 

And last but, not least, our pretty princess snuggling with daddy.  She's getting SO big!

 

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