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!

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

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!
Cheers!

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

Torn

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!

Love,

Dave, Megan, Logan, Mason and Courageous Riley!

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. 

http://www.myfoxla.com/story/21483630/inspiring-4-year-old-boy-is-a-hero?autoStart=true&topVideoCatNo=default&clipId=8549818#.UTaImJn32ac.facebook

 

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...  

www.rossfamilylove.blogspot.com

 

We hope this week starts to turn around for Riley.  No matter what situation you're in seeing your child sick stinks!

 

Love,

Dave, Megan, Logan, Mason & Courageous Riley!

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!

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

Happy 1st Birthday Mason & Riley

Happy Birthday to our babies!  What a year it's been.  I can still remember how shocked we were when we first found out and how nervous we were the entire pregnancy.  What would we do with two babies?  How would we handle them at the same time?  How would Logan react? 

When we first found out we had multiple ultrasounds to confirm the pregnancy and weekly ultrasounds to make sure both babies continued to grow.  I still remember a very early ultrasound when one of my doctors Dr. M walked out of the room and said "be careful what you wish for".  He had seen something on the u/s but, didn't let us know that it was indeed 2 babies.  It was a few weeks later when we had our 12 week NT scan that the tech told us she thought we were having a boy and a girl. 

 At our 20 week gender ultrasound appointment it was confirmed that we were indeed having b/g twins.  I still remember telling Logan and it was like he'd hit the jackpot, a brother and a sister!

We prepared for the babies arrival but, never really knew what we were in for.  A little after Christmas I started having braxton hicks contractions and ended up in L&D sometime in mid January for monitoring.  It was the week before my grandmother's funeral and my doctor didn't want me to make the car trip to San Diego for the services just in case something happened.  From that point forward I took it as easy as possible and set my sights on making it to my scheduled c section at 38 weeks.

The morning of February 28th arrived and we dropped Logan off at my parents house.  We arrived at the hospital around 530/6 am and began the prep for my repeated c section.  The nerves I felt this time were unbelievable.

The anesthesiologist had a difficult time getting my spinal in and my doctor urged her to try one more time before making the call to knock me out.  I am so thankful for that last try!

This time I felt more pain then I did with Logan but, the excitement to meet our babies helped me power through the odd pains, tugs and nausea.

At 8:16 am baby A Riley Elizabeth was born weighing in at 6 pounds 9 ounces.  A minute later at 8:17 am baby B Mason Scott was born weighing 6 pounds even.  Dave says they were actually born in the same minute but, they called them in separate minutes.  We sort of like that Riley is the "middle" child and has an older and younger brother to look out for her.

At first Mason seemed to be in respiratory distress and they whisked him away to the NICU.  I was sad.  Dave left with Mason and by the time he returned to the OR they made the call to send Riley to the NICU as well.  I was crushed. 

They sewed me up and sent me to recovery where I had to sit and wonder how my babies were.  Finally, after I was cleared to go to my room they wheeled me through the NICU for a first glance.  They looked so tiny, Logan was 9+ pounds when he was born and the difference in size and addition of the machines just made them look little.

We got settled in to our room and Dave made multiple trips back and forth to the NICU throughout the morning to check on them.  Surprisingly, early in the afternoon they brought Mason to me.  He was so cute and looked just like his big brother.  A few minutes after Mason got to me Logan arrived.  He was so excited to meet his siblings.  He kept asking where Riley was and it broke our hearts to tell him she was in another room that he couldn't go in to.  Little did we know then that having the NICU experience would make this illness with Riley much easier on Logan.  He knows she came home eventually and the doctors made her better so he tells us all the time that Riley will get better.
Unfortunately, Riley still had to stay in the NICU and was being monitored for her lung development.  Most expected Mason to be the one to need the longer NICU stay as usually little boys end up in the NICU.

The next morning I remember wondering how I could get over to see Riley.  I knew I had to get up and walk or else I would only get to see her through pictures.  Unlike with Logan when I didn't get out of bed for 36+ hours (big mistake) I made sure to get moving ASAP.  One of the nurses who I knew through work gave me a pep talk and pretty much made me get out of bed.  I am thankful for her proactive nursing and encouragement to this day.  Dave walked in the room as I waddled my way back to the bed from the bathroom and I think he almost fell over.  It's true when they say there is  a will there is a way.  I was determined to see my little girl!

Seeing Riley in the NICU was the hardest thing I had ever gone through.  She was hooked up to a zillion machines and we could only touch her at first not hold her.  She had the signature Hopper baby look though and laid in the warm bed in just a diaper with her hands up above her head.  She was watched over 24 hours a day with a nurse sitting beside her the entire time.  This would be the first time I knew what angels nurses were.

My doctor allowed me to stay a day longer then normal and we discharged with just Mason 5 days after my c section.  It was such a happy/sad moment.  As we drove away from the hospital I cried and cried.  How could we just leave our baby behind.  I knew she was in good hands but, it was hard. 

Thankfully, 2 days later we got to bring Riley home!  And our adventure began.

Mason, you are a spitting image of your big brother.  You look so much like Logan that Logan thinks some of the pictures around the house from when he was little are actually you.  You have a fiery personality,  You are determined.  You adore your big brother and sister.  You've come a long way from the little 6 pound infant you once were.  At last check you were 22 pounds.  You've taken your time to do things but, always do them on time.  You army crawl with the most determined look on your face.  If you want something you will get it.  You are SO close to walking and cruise the couch and anything else in your path.  You eat anything.  I don't think we've given you something that you haven't enjoyed so far.  You have a little temper already and when you are hungry or tired it really comes out!  I think you may have my personality.  You light up a room and have since you were born.  Your giggles and smiles are infectious.  I hope your determination to get something and happy go lucky personality never change.  You're our littlest bubba and bring us so much happiness.   We can't wait to see you grow.  Thank you for being our youngest and being so much fun.  Happy Birthday Mae Mae! xoxoxo

Riley, oh how you've tested us from day one.  You are our cautious, curious little girl.  I tend to think you know you have 2 brothers who will always watch over you so you let them take on those protective roles. You're picky, in a good way.  There were only certain people you'd let in your circle.  Once in they were your buddies.  You don't like new situations and rarely crack a smile at a stranger.  Daddy thinks this is good.  Once you are comfortable in  a situation you have fun.  You're sneaky.  One of your brothers turns the other way and you dive in to steal a toy.  We've always joked that you were our lazy baby but, really I think you like the attention you got because of it.  While Mason would do something you'd sit and watch and then sneak in your milestone a couple weeks later.  You do things on your time and when it is right for you.  You are so girly.  You love your dolls and the pretty makeup mirror you got for Christmas.  We call you our pretty pretty princess and mommy calls you pretty princess pants.  You adore your brothers.  We love seeing the way you look at them and how much you want to be like your big brother.  We hope your feisty nature and serious personality take you far in life.  You've scared us more then we ever thought possible.  I think mommy and daddy both have half a head of grey hair now.  We are thankful for you.  We are thankful you're here to celebrate your birthday.  Keep fighting baby girl. xoxoxoxo

As we celebrate today a bit differently then we had expected we still realize it is a celebration no matter where we all are.  I've always LOVED 1st birthday parties.  Celebrating a child's first year of life and toasting the parents and family for surviving the first year!

We're so thankful to have both of our babies with us as we hit this birthday.  I knew my life had changed forever when Logan was born but, I never knew how much it would change.  We've gone through some of the best and worst days of our lives since having children and yet, I know these trials and tribulations will only make all of us stronger.  The thought crossed my mind the other day that if things had gone according to Dr. Doom we wouldn't even be in this situation and given the opportunity to celebrate both of our babies today.  I quickly replaced that thought with how thankful we are. 

We've prayed, remained hopeful and faithful and been supported through the last couple of months and last year by the most amazing group of people.  We've had support from all over the country and many countries around the world.  Our families have banded together to help make this whole situation and the transition to 3 kids easier for our little family.  We've met the nicest nurses, doctors, therapist and support staff to help us make it to this day.  We've had good days and we've had bad days.

Today we choose to celebrate Mason & Riley and toast all of you.  One day when my letter begins Happy 18th Birthday Mason & Riley we will tell them how far they've come and how loved they've been by so many different people.  So thank you.

Happy Birthday Mae Mae & Ri Ri.  Thank you for changing our lives forever!

And cheers to all of you!

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

*** All of our professional pictures are courtesy of Julie Andress Photography.  If you're in the Pasadena area and need a photographer I can't rave enough about her work.  Check her out!  julieandressphotography.com***

Happy Birthday Hannah! Riley GI update!

I'll have a very special, picture filled post tomorrow morning but, wanted to stop in and give you a little Riley update.

She finally made the trip over to CHOC today to see her GI doctor.  All is good in her abdomen.  No blockage or issues.  The GI doctor thinks they haven't been feeding Riley enough and by slowing down her feeds they've actually been messing with her tummy.  Not exactly the medical terms she used but you get the point.

So Riley will now get her 100ml (about 3 1/2 ounces) over a 15 minute period in a bolus.  Basically, an over sized syringe.  She'll get her feeds every 4 hours and the night feeds will be stopped at 10pm.  She'll start her morning feeds at 6 am.

So far so good!  2 feedings since she got back and she's tolerated them just fine!  She is still gassy but, that is natural and actually slowing her feeds probably slowed her intestines.

We hope this is it!  Really, truly to have this figured out will be such a blessing and relief for Riley!

Dave also made Riley's next appointment to get Riley's "button" put on.  Basically right now she still has a tube that comes out of her tummy.  Her mickey button will allow her to wear onesies and normal clothes again when she isn't feeding.  She'll go back for that procedure on March 22nd.

So it's been a good day although, I think the trip in the ambulance and waiting for the doctor wore her out!

I'd also like to wish a very Happy Birthday to Hannah, our babysitter/nanny whatever she wants to be called! :)  She had Mason today for part of the day so hopefully he was a good baby for her.

Meeting Hannah months ago with her mom in the Methodist cafeteria was such perfect timing.  Hannah is wonderful with all of our children and has always had a special bond with Riley. 

I hope that when Riley gets older she will be just as sweet, sincere, caring and thoughtful as Hannah is.  She's set the bar pretty high!

Happy Birthday Hannah!  Thank you for everything you've done and for being a part of our lives! 

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