Wednesday, March 27, 2013

90 days, 3 months

90 days.  3 months.  1/4 of a year.

Riley has now been in a hospital for 90 days.  The 27th of every month sneaks up on me and then I realize what day it is and the memories of the first few days at CHOC flood back all over again.  Today it led me to go back and look at pictures from those first few days and I realized just how far Riley has come.  Perhaps a gentle reminder to me (us) how much can happen in 90 days.

It's been a startling date because then I wake up the next morning and realize the babies are now another month older.  Another reminder of how far we've come.

We've gone through New Year's, Valentine's Day, St. Patrick's Day and birthdays.  We'll spend one last holiday,  Easter in a hospital.  Logan just wants to make sure the bunny knows where to find Riley.

Riley has been doing ok.  Good and bad days like always.  She is coming back to us though each day.  When she looks at us she sees us.  When she makes eye contact she connecting.  She's starting to actually look all around consistently and will look to the right now as well.  We just hope this continues.  She's more mad now but, that's to be expected especially for a TBI patient.  She can't verbalize her frustrations like an adult would so she just gets mad!

We're in get ready to bring Riley home mode and we couldn't be more nervous yet, excited.  As long as everything falls in to place, and I hope it does, we believe with all of our heart that Riley will do even better at home and that we will all emotionally do better.

There are days, like today, where I don't even see Dave and we only update each other via phone/text.  And days where we literally still just pass in the parking lot or share a quick lunch together in the common eating area here at Healthbridge and it's hard.  It's the part that you do because you have to but, also the part that can really get to you if you think about it too long.

We were able to spend the night away on Sunday and it was needed.  My mom stayed with the boys and Grandpa Hopper stayed with Riley.  We were able to spend Monday morning together having breakfast and returned to Healthbridge around noon to relieve a tired Grandpa!

Monday afternoon the delivery of all of Riley's medical equipment and education on how to use it began.  I'd say that is the day when Riley coming home really got "real".  Logan is very curious about the O2 tanks at home and Mason has already tried to pull the plug out of the O2 generator.  So.... mommy hit up Amazon and a collection of baby gates, plug covers and monitors will be at our house by the end of the week.  I've also been looking for ideas of things we can use around the house for Riley to "hang out" in.  Unlike a newborn who has 1000's of options a child Riley's age is pretty limited.  So far I have a bean bag chair on my list but, if you have any ideas we'd love them!

Riley's new car seat arrived this morning and it is waiting in her room to be looked at in case it needs to be outfitted in any way.  We were going back and forth on keeping her in her infant seat a little bit longer or moving her to a convertible.  We figured while we have the expertise of the staff here at Healthbridge to help us configure her car seat it was best to go with something that she can use for a longer period of time.  Most of our car seats are a gender neutral black but, once I saw this pattern online yesterday I knew Riley had to have it!

I got home yesterday in time to relieve my mom so she could get down to Del Mar to see my niece Molly and SIL.  My brother flies in tonight and they'll be here through the weekend.  We're all looking forward to seeing them and my SIL's growing belly!  Our new nephew will be here sometime in early June.  Logan is looking the most forward to a trip to Chuck E Cheese with Molly on Friday.  He's talked about it for months!

I took Mason with me on a quick trip to Target to pick up bunny supplies yesterday.  I figured he'd keep the secret from Logan on who really does the shopping!  It was so odd being in Target without all 3of the kids.  Solo trips have become the norm but, I usually don't just have one kid with me.  Brought back many memories of when Logan was Mason's age.

We picked Logan up from school and we were home not 2 minutes when my crazy child face planted in to our kitchen rug.  Mason is learning to walk.  Has taken two steps here and there on his own.  He uses anything to walk around the house.  Stools, chairs and toys.  The particular toy he was using slipped out from under him and he landed just right on the rug.  Of course, he does this two days before we plan to see the bunny and right before Easter :(.  He is our tough one though and I am scared that he is going to be the fearless boy on the playground.  As it is now he slides face first down two steps in our hallway over and over and laughs and laughs!

These boys may end up giving me more grey hairs then Riley already has!

I looked around the house yesterday and started to freak out about everything that needs to be done.  Our dryer broke last week and after I went to Home Depot with the boys and realized they don't install gas dryers in garages anymore, I decided to just have it repaired.  We just don't have time to do any extra projects ourselves.  So the repairman comes on Friday and I couldn't be happier.  Our house has looked like this for the last week and the piles of laundry to be done just keep growing.

Saturday, we'll have a purging/organizing party and hopefully be ready for Riley's homecoming next Wednesday.  We still have Christmas decorations waiting to go in the attic and Christmas gifts that need to be given.  I need it done though and the piles of mail sorted and over flowing playroom organized or else I will go crazy.  Those that know me well know how I'm not the most organized person on the planet so my desire to have these things done now is just odd to me.  I suppose it's the one thing I know we can actually do and know what the outcome will be so it makes me feel better.

Today I took Mason with me and we went to the Easter egg hunt at Logan's school.  Of course, his teachers were wearing their Team Riley shirts, as it's Wednesday, and it was a reminder of how many people are praying for and thinking of Riley and our family.  Those little reminders help... a lot!

It was fun to see all of Logan's friends and watch them run wild on the playground gathering up eggs.  Afterwards, they did a page of work before they were going to have a little party and Veggie Tales Easter movie.  We had to leave early though because I needed to meet Hannah back at our house with the boys and get back down to Healthbridge to relieve Grandpa.  Now I need to find the movie for Logan!  It's all he talked about driving home!

Dave actually had a job going today and needed to be there so we were happy Grandpa could help us out.  When I say our life has been put on hold for the last 90 days it really has!  I think it was good for Dave to get back out in the field doing something!

They're planning on adjusting a few of Riley's medications in hopes that she won't need so many in the long run and once we're home.  I'm very nervous that this won't all be figured out in a week. 

Thankfully, after a discussion with the nurse and his phone call to Dr. Irwin they only upped her valium a little instead of messing with her baclofen.  At first the rounding doctor wanted to double her dose of baclofen and believe me if they'd done that she would have been out of it 24/7.  It's tough to find the balance between keeping Riley awake and comfortable and over medicating her to the point that she can't progress. 

Thankfully, Dr. Irwin, Dave and myself see eye to eye in this regard and we always ask them to consult her before adjusting anything.  Being the advocate for your child, telling different people the same thing over and over can really get frustrating.  It's also stressful when you just want to make sure you are making the right decisions.  The last thing I want is Riley to be stressed out or agitated but, when I see her trend towards toning and agitation right after feeds and right before she is gassy I'm not going to allow you to up a medication that will in turn relax her so much that when she's not having these episodes she can't function.  Really I need a notebook to start documenting each day here so we have a good reference when we are home trying to decide what to do for her! 

So thank you to all of you for being on this journey with us the last 90 days as we've navigated hospitals, surgeries, nurses, therapists, medical decisions and the ups and downs of hospital life.  I will hopefully squeeze in a post or two before next Wednesday but, if I don't get the chance I wanted to make sure I said thanks!

I get teary thinking about how people have come together from ALL aspects our life, near and far to help us get through the last 3 months.  It's a journey I don't wish on anyone EVER but, if we had to take this journey I'm happy we're not doing it alone.

I've reconnected with people I haven't really spoken to in years, learned about remarkable stories of recovery and triumph from emails and messages you have all sent me.  And we've been carried through this nightmare thanks to all of you.

We've met young individuals at Healthbridge that have inspired us to push Riley even farther.  We've watched a handful go home and cheered them on as they did.

We've met doctors, nurses, cna's, rt's and therapists that have held our hands through the toughest days and have helped us to make the most difficult decisions while under tons of stress.  We've shared tears, happy stories, inspiring stories and learned about their families as they've taken the time to learn about ours.  Each of these people has touched us in one way or another.  Until you are in the trenches so to speak I don't think you can ever fully understand what the person who takes care of your loved one or friend deals with while on the job.  They are all angels and all deserve to be thanked every once and a while (if not daily) for the work they do each day.

This next step is going to be scary and one we hope happens as smoothly as possible.  I remember how nervous we were to leave CHOC and how it all worked out.  So, we'll cautiously take this next step and hope for the best.

So thank you!  Thanks for your continued support. We hope once she's settled we can take Riley out and about to do normal things with us. We also  hope to be able to educate people on Riley's extra accessories (trach/gtube) and I pray I can deal with all of the questions and perhaps stares that will come along with it all.  She's still our little baby girl and we just want what is best for her and for Riley to live the life here that she was intended to.  Hopefully, the decisions we've made so far are giving her the tools she needs to get there.

Riley still needs ALL the prayers, thoughts and good wishes she can get.  We're on a road and journey that has only just begun.....

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


Saturday, March 23, 2013

Happy 6th Anniversary and we move on!

Busy, busy, busy.  I really wish we had a few more hours and more energy each day to get everything done!

Riley did great during her procedures Friday.  As I pulled up to the valet at CHOC I realized something was going on!  I had seen the news earlier in the morning and saw that Ryan Seacrest was broadcasting from the new radio station he sponsored but, I didn't expect to be in the middle of the hub bub!

We got to know most of the security guards while at CHOC.  I guess we're talkative? Friendly?  So as I waited to see if I had to run to Healthbridge to pick up the mickey button that we were supposed to have (supposedly) I was in the middle of the Seacrest crazy.  My favorite security guard told me she had no clue who anyone was but, she was going to stop them to find out.  Love her!

We have not been back to CHOC since the new tower opened.  It was amazing to see and people like Ryan Seacrest have donated tons of money to make this addition a reality.  After seeing what has been done it has only reaffirmed our mission as a family to do something big at some point in the future for this hospital.  Yes, we aren't "famous" but, I believe we will think of and do something that has a lasting impact at some point.  This hospital saved Riley's life.  It's the least we can do. I can't describe our love for the staff at CHOC.  We hope to walk back on the PICU floor with a little girl that makes them all go wow.  Trust me.  This is something we both dream about.  Riley can do it.  She will.

Anyway, I waited next to Sam Rubin who is a local news guy here who joked to me that no one wanted to see him as the Wanted left and I waited for Dave to let me know what to do (I had the valet guys hold my car because I thought I'd have to run over to Healthbridge).  BTW I have no clue who the Wanted is.  They looked like grungy teenagers to me.  I suppose I could have taken a pic like all the other crazies but, I felt silly.

Dave let me know they found a mickey button for Riley at CHOC, thank goodness, and we were good to go.  If they hadn't found it her lack of food since 2:30am and expensive ambulance ride would have been a waste and we would have been mad!  Dave was livid before they found one.  We try to make sure we know all that is going on and we were never told we were supposed to bring this with us!

We were in the new 3rd floor outpatient surgery center.  It is beautiful, state of the art and just perfect for CHOC.  Before this addition all surgeries were done over at St. Joseph's.

Riley's procedure started and my nosey, curious self wanted to check out the Starbucks that we were told was opening before we left.  So we head to the 2nd floor and that's where Ryan Seacrest and crew were.  We are so celeb naive and after we got our coffee I guess we walked out with Zendaya and Taylor Lautner (sp).  Only reason we know this is our anesthesiologist and GI doctor were joking about what a jerk Taylor was and how the chief of surgery made a comment to Riley's surgeon that she needed to give Zendaya a gtube.  Girl is teeny tiny! 

It was just funny to see the doctors all excited about the celebs.  We missed Miley Cyrus and a few others but, we weren't there for them we were there for Riley!

She did great, has been pissed about the PH probe tube but, that came out today at 12/1230 and now she has a little button!

Today Grandpa Hopper stayed with Riley for a couple hours so I could come home and switch with Dave and get ready for my bff from colleges wedding shower.  I had to ask for help because pulling a shower off just wasn't going to happen and her family friend Mary stepped up to give her a beautiful shower on a beautiful day.  It's been a while since I've been in Toluca Lake after practically living in Studio City 12 years ago so it was nice to be around some familiar settings!

I can't wait to be Leane's MOH and it was a wonderful shower.  55 days to go!

Thankfully, Tia T and Uncle Mike braved watching the boys with Mia in tow.  Teresa's sister also came over with her daughter Isabel and I know Logan loved the playtime with someone more his age!  When I say we have amazing family and friends I really mean it.  T & M were available for us last minute and I can't thank them enough!   Bonus was I actually got some time when I got home with my beautiful goddaughter Mia!

Tomorrow is our 6th anniversary.  I could nauseate you with all the ways I love Dave but, I won't.  We've been through so much in the last 6 years.  More then I'd ever care to list out and Riley's sickness has just been the kicker.  It's just been life things but, I would never have wanted to go through it all with anyone else.  Thankfully, nothing has ever had an effect on us or the relationship we have.

Dave gets me.  I get him.  We work.  I am thankful that we crossed paths almost 10 years ago and that I get to raise our little family with him.  Obviously, I love him more then words can really describe.  We just click and in my opinion we make a pretty good team.

I am thankful every single day that my life is the way it is.  Even when the days  are dark and I don't think I can go on Dave is there to remind me why I can.  I hope and pray my children find something similar one day. 

So, now I'll bore you with some wedding pics.  We were married by Phil Wood of the Church of the Good Shepard in Arcadia.  I'd always admired him and Dave was able to meet him with me at a few Methodist Hospital events before we were engaged.  He was the ONLY one I wanted to marry us and after we left our first meeting with him Dave was convinced as well.
In this picture you see Brittany, Dave's step brother's daughter (my inspiration).  On the day we thought Riley was gone Jimmy (Dave's step brother was at his side in an instant)  We've lost Brittany since our wedding.  I was pregnant with Logan at the time.  Her strength at the time and throughout her sickness reminds me daily to have faith.  Brittany dancing at our wedding was one of the things that made me the happiest.  If we could all know a Brittany our lives would be infinitely richer!



As all things seem to come full circle Phil was also the first person I asked my mom to call when Dave was told that Riley was gone and essentially brain dead.  He was willing to drive down at 11pm at night if we needed him. 

Instead, we all composed ourselves and he met us in the hall outside the 6th floor PICU on the morning of one the darkest days of our life.

Phil's presence was so comforting and he was there to help guide us through the entire morning that we were told Riley was not "gone" and there had been an error.

I, to this day, get chills thinking about how life came full circle.  The man that married us was also the man that carried us through the hardest day of our life.  He stuck around for hours.  Listened and translated doctor speak and just was present.  I hope everyone can have a Phil in their life.  One day, when our children are finally baptized, he'll do it and it will mean even more to us as a family.

I guess we just don't know sometimes how certain things fall in place but, they all do for a reason.

So, happy anniversary Dave.  6 amazing, crazy years.  2 businesses, 3 kids, 1 house and a lifetime of memories.  I can't wait to see what the next 6 years bring!  I have faith that they will be amazing!

We'll celebrate with a night away while the grandparents hold down the forts!  We're both lucky and blessed.  And believe it or not thankful!

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

Thursday, March 21, 2013

2 weeks until we come home!

So we're now in countdown mode with 2 weeks left until we go home.  We're excited but, nervous.  We also have tons to do before Riley gets back home!  There just never seems to be enough hours in the day to get it all done.  We'll be ready one way or another though.

The thought of being under one roof again and being back together as a family makes all of the worries go away even if it is just temporary.  When I look back on the last 2 1/2 months life has been such a blur and been so crazy.  It will be nice to not have to pack a bag every other day, sleep in our own bed every night and just be together.
**She almost looks like she's trying to smile at her favorite doll in this picture.  Logan loves that she likes this particular doll.  He picked it out as a present to Riley before she was born.**

Our new normal will figure it's self out I am sure and pretty soon I' hope to be telling you all how happy we are to be together again.

Logistically, there are a bunch of pieces to the get Riley home puzzle and I worry that we're going to miss a piece.  The ball is rolling for nursing care, therapy services and medical equipment.  We're still waiting to hear what we are approved for.  The wait is killing us.  Please send your prayers and good thoughts that we get what we asked for.  Riley needs it and we need it.

Riley has been having good and bad days.  They attempted to switch her to pediasure for her feeds.  That was a big time fail.  Monday early morning with Dave she threw up her feed.  Then Monday early evening while I was with her she threw up her feed again.  There is nothing scarier then seeing the monitor dsat while your child is puking and you're trying to stay calm and remember what to do in this situation.  Riley has only ever thrown up a handful of times, when she first got sick the day after Christmas.  This is how we knew it was her feeds.  She topped the puking episodes off with one last occurrence early Tuesday morning.  It was at that time that our wonderful nurse S spoke with the nutritionist and switched her back to her regular formula enfamil gentlease.    Thankfully, she's been puke free since so hopefully, Riley will be more comfortable now.

We're noticing that Riley is much more aware now.  It's a great thing but, due to being more aware she gets upset much easier.  The door to her room makes a certain creaking sound when it opens and she now knows when the nurses or RT's are coming in to mess with her.  She's also just frustrated.  We can tell her little brain is working overtime.  She has had a few episodes of what is called a neuro storm.  They are hard to watch because nothing will calm her down.  Hopefully, these are occurring as she is healing.  I've noticed that as she starts to do something new she will start to have these again.  Makes sense when I realize she is now more aware.

Saturday, I brought the boys down with me to see Riley and do the trade off with Dave.  Usually, Riley is pretty calm while they are here.  Unfortunately, their presence made her pretty upset.  I know it's because she wants so desperately to be able to play with them.  Hopefully, this is a good sign that she has the motivation to get back to playing with her brothers.  It's so sad  watching her frustration and seeing the confusion in Mason's eyes that sissy can't play with him.

Sunday, while Dave was with Riley, I was able to take the boys to Donovan's birthday party.  It was a great way to spend St. Patrick's day and Logan had so much fun playing with Gavin and the older boys.  I think he fails to remember he is 4 sometimes especially when he is around older boys.  Donovan and Gavin are my friend Erica's boys and seeing our kids play together is really neat.  We've been friends since high school.  Never in a million years if you'd asked us back when we'd ditch school for bagels if we'd have kids who would play together would we have imagined we would.

Happy 3rd Birthday baby Donovan! (That's Logan's name for him and I don't think he'll ever lose that title)

Yesterday Riley was fitted for full leg braces.  When Riley tones she usually does it the most in her legs.  If you are able to break the toning by bending her legs she is much more comfortable.  Toning is just a part of the process but, we want to make sure that Riley doesn't do any long term harm to her joints etc. so the braces are going to be essential to help her through this stage.  This afternoon they dropped off her new leg braces.  When Dave sent me the picture he called her "Robo Riley".  I'm just happy that the technology and resources are available to get Riley the help that she needs.

(Riley has quite crazy hair these days as you can see in this picture!)

Tomorrow is Riley's GI day back at CHOC.  She'll go again via ambulance and have an outpatient procedure to put in her mickey button.  She'll also have an endoscopy and ph probe done.  We're hoping the procedures are fast and that Riley tolerates them!  CHOC opened a new building the day after we left so we're looking forward to seeing the new outpatient floor.  We'll update tomorrow after all is done and we are back at Healthbridge.

Thank you again for all of your prayers, well wishes, thoughts and messages.  When we're down we turn to these to help get us through the day.  As we've encountered people who don't know Riley's story we've realized how hard it is to relive how we got to this point.  We wish our baby girl didn't have to endure so much but, we believe in her and know that the support she's getting is helping to get her (and us) through each day.

Fight On!

Dave, Megan, Logan, Mason and Courageous "robo" Riley!

Friday, March 15, 2013

Busy week!

It's been a busy week!  As you know Monday I met with the home health care company.  Tuesday was our "conference", Wednesday was Dave's birthday and yesterday a lady from the State was out to evaluate Riley as well!  Whew.

As I mentioned previously, we had some concerns over the number of days Riley was being allowed to stay here at Healthbridge.  Although, we'd love for her to be home, Healthbridge provides her the opportunity to have therapy 6 times a week with each discipline.  Once we go home we'll be provided with 2-3 times a week.  Now, this doesn't mean we won't all be working with her as well but, we appreciate the professionals being able to work with her as much as possible!

Tuesday I brought up the difference in days covered and although my timing was apparently not right with one of the doctors (who isn't even on Riley's care team ) we were able to finally sort out that she did indeed have more days available .  So we officially have a going home date!

April 4th!

Now the fun part of organizing everything we need as far as DME (durable medical equipment), medications, therapies, nurses etc. begins.  Hopefully, we will be approved for the number of hours we have requested for in home nursing care.  Once we know that coverage we will plan on what we would like to cover in addition.  Realistically, due to having two other young children, we will need to have 24/7 care for at least 2-3 months. 

So we're relieved.  I'm happy that I can still add  and thrilled we don't have to fight with our insurance company to get more days covered.  One of Riley's doctors was in this morning and was just as excited as we are that we have more days here.  That alone reassures me that what my gut was telling was right.

Wednesday was Dave's birthday.  He woke up with the boys and got cards from all the kiddos.  He and Logan shared some cinnamon donuts and strawberry milk.  I guess Logan didn't quite share though!  I was able to run home to shower and change and Grandpa Hopper stayed with Riley while my parents watched the boys and we headed to a nice dinner together.  Mastro's in Newport Beach plus Newport people watching made for an enjoyable evening!  We were crunched for time so Dave didn't get any birthday cake but, we'll celebrate with some cake when Riley comes home.

Riley has had a fantastic week and I am so thankful for that.  She is doing so well in all of her therapies.  During speech this week she has tolerated the passy valve and even had some purees from a spoon!  During conference on Tuesday they told us they stopped VitaStim due to her lack of participation.  I chimed back with huh?  She's swallowing and her secreations are way down so it confused me.  Apparently, the VitaStim was stopped because she is doing so well not because she wasn't participating.  We were happy to have this clarified by one of our favorite ST's after Tuesdays meeting!

In PT/OT she is awake most of the time and getting in to new positions everyday.  They are having some knee orthotics made for her as well to help break the tone that she has in her legs.  This is the one area that she exhibits the most toning.  The braces will help so she doesn't overextend her knees when resting.

Riley is scheduled to get her mickey button and have a PH probe done Friday (3/22) at CHOC.  It will be an outpatient procedure in the new OR.  It will be neat to see the new facility as it opened the day after we left.  With her button Riley can wear onesies again and generally be more comfortable without the gtube hanging off of her belly!

Overall, it has been a good week.  I really hope for more of these!  We still realize setbacks are a very real possibility but, we'll take what we can get!

I've been home with the boys this afternoon and will take them to visit sissy tomorrow when we do our switch.  Logan can't wait to see Riley and hopefully we can take Riley out on a walk.

We hope you have a great weekend and a safe and happy St. Patrick's Day!

Dave, Megan, Logan, Mason and Courageous Riley!

Monday, March 11, 2013


I don’t usually title these posts until long after they have been written and proofread at least 10 times.  I also don’t usually think of a theme for my posts.  Usually, I just start writing and it all comes together.
As I drove back home to the boys after leaving Riley and Dave at the hospital I had an overwhelming feeling that kept creeping in to my thoughts.  I was torn.
2 weeks from today we are supposed to head home.  Yay! But, nay?  Riley’s had an awesome day after a pretty rough week.  The doctors weren’t able to nail down any one thing that had her upset last week except possibly a cold?  However, as a result of this cold Riley lost 3 days of therapy and had us pretty worried she was on a backwards slide as far as progress.  Beginning yesterday we started to see a change and it was like a switch had been flipped and we were back to where we were before this mystery illness.
Riley was back to moving her limbs in frustration.  Needing Ativan to calm her from her frustration not just  sickness agitation.  And then this morning she sailed through PT/OT with possibly the best reports we’ve had so far.  She also slept afterwards in  the most comfortable, relaxed positions we’ve seen her in.

I met with the reps from the home healthcare agency  and put in to action everything we need to do to get Riley home and yet, we just don’t feel she is ready.  Our feelings are not alone.  The nurses we deal with daily agree that perhaps Riley needs a little more time, some time to make up for those lost days  to get meds and feeds all figured out before we’re thrown back to reality.  Not that living this nightmare the last 2 ½ almost 3 months hasn’t become our reality but, back to our home life reality.
And then I thought about the decisions we make daily for Riley.  Give her Tylenol, hold the ativan, go ahead with her feed, hold her feed, delay therapy until the afternoon, bath time now or later and I realized we’re always torn on making the right move and doing the right thing.

When I left today I cried.  For the first time in a very long time I knew that when I left Riley would miss me.  She had just been fed and I leaned over to tell her I was meeting daddy in the parking lot and going home to the boys.  She opened both of her eyes and looked right at me letting out a squeak.  And I was torn between the two worlds we live in right now and my desire to be two places at one time.  Our nice nurse reassured me that she would be ok as I told her how I felt.
Through all of this angst over whether or not we go home in two weeks we still have to move forward.

This weekend we were able to go to the Laker game while Grandpa Hopper stayed overnight with Riley  and my parents watched the boys.  It was a night full of laughs that we needed.  Jason, our friend (ok Dave’s friend first but, we’re all friends now) drove out from Vegas and Hans (the one person I can thank for Dave and I making it through dating) came to the game with us.  When Jason showed up at our house with his Team Riley shirt on and then proudly wore it to the game I was barely able to hold back my tears.  Saturday, before Jason headed back to Vegas he went with Dave to visit Riley.  I know he’ll kill me for saying it but, it was one of the nicest gestures someone could have done for Dave.  To make the detour and add on an extra hour to his drive home really  meant a lot to both of us.

Saturday while Dave headed back to Riley I stayed behind with the boys and started to get ready for Riley’s homecoming.  I was planning on driving up to Vegas to attend a wedding but, again I was torn.  I really needed the time to get our house in order.  This meant cleaning out closets and moving Riley’s crib to her new room, our old den.  As I stared at the empty space next to Mason’s crib I could only feel great hope and thankfulness that Riley’s crib was just in another room and not gone forever.   We’ve been reminded and it is always in the back of our minds that this may have never been.
So, we’re moving forward with plans to bring Riley home in 14 days.  Will it be 21 days or 30?  We don’t know now as discussions with case workers and insurance companies must be done however, we do know that within the next month Riley will be back home with her family!  We worry about the adjustment for everyone.  How will we deal with a nurse present in our home 24 hours a day and still maintain our family vibe.  Do we really need 24 hour nursing care?  What will be provided?  All questions we hope to find the answers to over the next 2 weeks.

We also need to get Riley’s therapies lined up.  If all goes as planned (not sure anything does really) she’ll have each discipline PT/OT/ST 2-3 times a week at home.  This would be ideal.  Most of my questions today for the home health folks centered around the qualifications of the nurses and how willing they would be to adapt to our “normal” family life.  Ideally, I’d like to run errands, do preschool drop off and continue our life with a nurse in tow.  We’ve been so lucky to have Hannah who just clicked with our family and I need someone who will click with her and us.  So we’ll interview and try to pick the best group of nurses for our family.
Each part of this journey has been difficult for different reasons.  We hope bringing Riley home at whatever date it is in the near future is the right decision and is right for Riley and our boys.  We’ve balanced this hi/bye in the parking lot and have gotten used to switching off nights at the hospital.  Coming home is another unknown and is unsettling because it isn’t the norm we’ve grown accustomed to.

As I’ve said before and will say a million times over, change doesn’t sit well with me.  Please send your prayers, thoughts and good wishes that we make the right decisions.  Riley still needs them as well.  For every good day there is a bad day and we’d love for the good to outnumber the bad!

Fight on!


Dave, Megan, Logan, Mason and Courageous Riley!

Wednesday, March 6, 2013

A little bump in the road

Monday we were able to go to the memorial for my maternal grandmother's first cousin Jack.  First cousin of my grandma makes it sound so removed but, my mom's side of the family is small and Jack was more like a Great Uncle to us.  We spent all holidays with the Crawford's and I have always adored Jack's witty and opinionated personality.

Jack passed away February 8, 2013 at the age of 90.  I like to think he's joined my grandfather's and after greeting one another he told them all about my children.  He got to meet all of them whereas, my grandma/grandpas passed away before I had children.  We still haven't shared Jack's passing with Logan because he will be very sad.  He loved Jack.  It's how I know he would have loved my grandfathers. 

One of Dave's fondest memories or perhaps most memorable of Jack was a golf game before my brother's wedding in 2007.  There are some stories we share with many of those present for that game that day that will last a lifetime.

We last saw Jack on Christmas Eve.  A few days before Riley got sick.  I will carry with me the memories of that day as a reminder to appreciate each day we have here.  RIP Jack.

Dr. Knight the first attending that saw Riley came by Monday.  He was here at Healthbridge to see other families as well. It was really was nice of him to take the time to see Riley and check on her.  He was one we trusted.  Someone I felt so comfortable with when he walked the floor.  He works crazy hours and yet he took 5/10 minutes to visit?  CHOC is still such a blessing in our lives.  I will forever be happy that in our worst of times we were there and had the care of so many doctors, nurses and therapists.  I know I say it all the time but, really they are amazing people.

Yesterday was a very rough day for Riley.  She's either coming down with some sort of respiratory illness or has something else going on.  Thankfully, her chest xray was clear.  We're waiting on some lab work to come back and we're just hoping that it isn't anything too serious.  Her heart rate was all over the place yesterday and she would not calm down.  It got as high as 202 which we haven't seen in at least a month.  Thankfully, the doctors and nurses here are very proactive and are treating her with breathing treatments and steroids to keep her airway and lungs open.

Unfortunately, this meant that she had another day off from therapies.  She had a better night last night but, she'll probably just rest again today.

This road is so full of ups and downs.  We try to celebrate the steps forward and appreciate them when they do happen.  The steps back or pauses in recovery can be very very frustrating.  We went from such a great week last week with hr, spacticity and overall demeanor being under control to this.  Sometimes, I wish we could just fast forward a year or mostly I just wish our baby girl didn't have to endure so much.

Yesterday, while in a down moment I opened up facebook.  Right at the top of my newsfeed was a post from Fox11, a local station here in LA.  The story was all about one of Logan's friends Joshua.  They were in preschool together last year and Joshua was one of Logan's "buddies".  His happy disposition always made me smile.  We'd lost touch with Joshua this year as he's attending another school in the area.  Recently, when talking to another preschool mom at Kindergarten orientation, Joshua and his mom came up.  I've been meaning to contact her and this was a perfectly placed reminder.

It was also a reminder to appreciate each day and put in to perspective what we are dealing with and facing.  I need to remember to always encourage Riley and our boys to enjoy each day and live to their full potential.  Sometimes, these reminders come in the weirdest ways through mediums I wouldn't expect but, I am happy that they are there. 

Today is baby Gracie's surgery day.  If you don't remember she's the daughter of one of my friends from high school.  We're pulling for you Gracie!  Many prayers for a successful surgery and strength to your wonderful parents!
Surgery day is here" blog update...  
We hope this week starts to turn around for Riley.  No matter what situation you're in seeing your child sick stinks!
Dave, Megan, Logan, Mason & Courageous Riley!

Saturday, March 2, 2013

A birthday celebration!

We had a great day today.  The weather was beautiful, although a little too warm for my liking, but if it had rained I'd be complaining about that so we're just happy we were able to celebrate Mason & Riley in sunny weather. Yes, I know if you still have snow on the ground you are cursing me.

When the realization that we wouldn't be home for the big day finally set in we decided to just do something super small with our immediate families and a couple friends.  There are 20+ other families at Healthbridge and although I wanted to invite 3 times the people it just wasn't going to happen.  We needed to respect their privacy and quiet and really were limited on how many people we could have.  So we were a super small group but, perfect size for Riley as any stimulation at this point is overwhelming.  We'll re celebrate most likely at the end of August near the babies 1/2 birthday so we can include everyone!

With a little help from the activities director we were able to set up the back patio/yard and enjoy each others company for a couple hours. 

Riley was finishing up ST as people arrived so she was a tad late getting to her party.  She was doing really well though with sucking on the therapists hand and swallowing so we were thrilled.  She also had a great report from the doctor on rounds this morning who seems to think Riley's recovery is going at a faster pace then normal.  She made this comment after Dave had mentioned we had a phone call from the SW at CHOC on the babies birthday and she seemed surprised that Riley was doing so well.  Not in a bad way just pleasantly surprised.  She had called to wish M & R a happy birthday.  I know it's because of the prayers, thoughts, good wishes and support Riley has had. 

We didn't know how she would react to being outside.  She's sensitive to light and obviously a very sunny, hot day could be disastrous!

We brought the stroller out along with a portable suction machine but, thankfully Riley was content and calm in our arms the entire time.  It was so nice.  We had to go inside to change her diaper and she was mad until we got back outside.

My goddaughter and Riley's first girlfriend Mia let Riley borrow some sunglasses and that seemed to really help her.  Heck, I have to have my sunglasses on me whenever I'm outside or else I can't see so she is definitely my daughter!

Mason had a great time hanging out and especially took a liking to our family friend Jerry.  It was too cute to see them together and Mason was still giggling as Debbie and Jerry left to go home.  It meant a lot to our family that they were able to be there.  Debbie and Jerry have been such a wonderful support for our family and Debbie has kept Riley in special prayers the last few months.  They're more like an aunt/uncle so having them a part of this celebration was special to all of us.

Logan got to run around with his cousins and barely sat down long enough to eat his PB&J.  He was so excited to play with Tobin he barely ate any of his cupcake.  Very rare for him! 

It was nice to see him having so much fun and being so happy.  I worry so much about him and how this all makes him feel.  When he left with my mom the other day, on the babies birthday, he found a dandelion in the parking lot.  While we were buckling Mason in his car seat I hear him whispering a wish.  His wish was for Riley to get better, his friend Michael to come play at his house and to see his cousin Molly.  Cue tears.  I had no idea he knew about dandelions and wishes but, my mom told him about it at the park a few weeks ago.  He can be a typical 4 year old and drive us bonkers but, he really does have a sweet, kind, caring side.

We of course had Salsa Sweets cookies and they were a huge hit.  I think they are at any party!  I also picked up some cupcakes from a local bakery that were really good and huge.

Thanks to everyone who made the journey to Healthbridge to celebrate M & R.  We really appreciate it.  I had a whole speech that I wanted to say to everyone after we all sang happy birthday but, as I looked around at everyone in front of us I knew I wouldn't have been able to get a word out if I even started saying what I wanted to say.  So just know we love you all!

We have some big news to share next week.  We're still trying to get everything lined up and figured out but, we're excited to share.

I'll leave you with some pictures of Mr. Mason.  Logan went with my parents to Del Mar tonight and Dave is at the hospital with Riley so we had a little mommy/Mason time this afternoon.  He is so full of energy and in to anything and everything.  I enjoyed our time together and it was much needed.

We hope you all have a wonderful weekend!

Dave, Megan, Logan, Mason & Courageous Riley!