Thursday, February 27, 2014

Happy 2nd birthday babies!

It's been a ride.  Nothing like we ever imagined it to be.  Twins.  Sharing.  Doing things together.

We've watched the twin bond thrive through the unimaginable and know that Mason is the best therapy for Riley.  Mason adores Riley and spends time with her every single day.  This isn't what we wanted.  This isn't the way we envisioned it but, it's our normal.

Riley has proven to be the bravest person I have ever known.  Multiple hospital stays, surgeries, procedures, meds.  She's a hard worker and shows us in therapy that she is trying to do the things we ask of her.  She's still "Riley".  Riley is stubborn and picky and will let you know when she is unhappy with something.  Riley is our pretty pretty princess and my girly girl.

Through everything, Mason has been there for her, every step of the way.  We're thankful that the bond they have is unbreakable.

Mason has become a little boy.  Strong, stubborn and funny.  He has us in stitches every night.  He loves lawn mowers, trash trucks and helping the cleaners.  The kid is a neat freak!  He's silly and smart and quite the daredevil.  Mason loves his "brodder" and follows him around wherever he goes.  Mason is independent as well.  He wants to do things his way and with no help.  Mason loves the "me me's" (minions) and "mo mo" (Elmo).  It's a joy to watch Mason grow.

I will forever be thankful that after struggling to have another child we were blessed with 2.

Riley's illness has been hard and yet has taken us on a journey that no one would ever understand.  My 3 kiddos adore one another and their love fuels our love for our future.  Our life is not perfect.  In fact each day tests us more then we can explain.  But... we are together and together to celebrate another birthday.

I am thankful that today we celebrate BOTH Mason and Riley.

Happy 2nd  Birthday Babies.  You have both taught us more then you will ever know.  Your TRUE love for one another will always remind us that LOVE concurs all.

Happy 2nd Birthday Mason & Riley!

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

Monday, February 17, 2014

Happy 2nd Birthday Mia!

Sorry we've been MIA.  But, I guess it's a good thing.  Things have been pretty normal, as normal as they can be and it has been nice.  Riley has continued to be able to join Mason and Grammy on walks to the park a few days a week and has been doing really well in therapy.
What Riley's CI looks like on.

Riley's personality is really coming through more and more each day and it's a blessing to be able to see it.  It's something we were told we'd never see again.
Hey Grammy.

We've been very busy with various activities and outings and we've been sick.  Thankfully the cold that I shared with the boys didn't get to Riley or Dave.  Keeping Riley healthy is always a challenge and I was nervous that my simple cold would end up landing Riley back in the hospital.  But, it didn't and she was able to stay healthy.
Therapy time

Working hard!

Logan had his 100th day of school.  And yes that is my kid with the goofy smile in the class picture!

We were able to get in some adult time at the Laker game last weekend with Uncle Scott and Aunt Becky.  It's always nice to get out of the house without the munchkins!

Of course we celebrated Valentine's Day and I'm not sure if the boys enjoyed their heart shape donuts or mounds of candy more.  A restaurant I used to work at was making heart shaped pizzas so we ended the day with that.

This weekend we were all able to attend Miss Mia's 2nd birthday party.  I can't say enough about the relationship my kiddos have with Miss Mia, her parents and extended family.  I suppose "framily" is a good made up term to describe our friendship.  As I've mentioned before Mia loves Miss Ry Ry.  Her true love for Riley is a reminder to us daily that children really do see no differences and love unconditionally.  Although Riley may not run around and play with Mia she is always checking in on her and making sure she's okay.  We could all learn a thing or two from these little people that drive us bonkers most of the time!
Love for Ry Ry

Mason barely stopped all day from playing in the bouncer to running in and out of the house over and over again.  Logan was thrilled that Mia's older cousin was there and he followed Roman around most of the day.
The crazies!


Riley also got to finally meet Miss Addy.  Addy is as brave and courageous as Riley and I have a feeling these two are going to be bff's as well.
Hey?  Who is this?  Meeting Miss Addy.

Today is Mia's actual birthday.  Happy 2nd Birthday Mia.  We love you for the little lady you are becoming!  Besitos!!!

Mia's birthday means that the twins are not too far behind.  Invitations are going out today for their 2nd birthday party and it's hard for me to believe they'll be 2.  As the twins continue to become their own little people we try and appreciate each day as it comes.  I still have waves of grief that come from time to time. While some people have reminders around them of the differences their children may have from others we have a daily reminder.  Remembering that Mason (and Logan) are Riley's best therapy helps us to get by but, it still stings.  Instead of focusing so much on the differences though we try to celebrate the fact that Riley is here and able to celebrate her birthday.  The hard days and sleepless nights really are worth it.
Sweet snuggles with Daddy

This week we'll be back at therapy and we'll meet with the ENT to discuss Riley's next surgery.  I am hoping we'll be able to put off the surgery until after the birthday party but, realistically I know this may not be possible.  We'll see.
Someones hair is getting LONG!

We hope you all had a wonderful Valentine's Day (or as Dave calls it the fake Hallmark holiday) and that you were able to spend time with the ones you love and those that love you.  Today Logan is off from school and our 3 amigos are hanging out together.
Silly boys and video games!  Riley's wondering where the dolls are.

Fight On!

Dave, Megan, Logan, Mason and Courageous Riley

Tuesday, February 4, 2014

What's next?

We're back home.  Thankfully!  We'll be headed back to CHOC in a couple of weeks though.

Last Wednesday was Riley's bronchoscopy/laryngoscopy.  This procedure was checking her upper airway as it hasn't been looked at since she got her trach.  If you recall we've had several pressure tests done on her trach and they have always come back high.  That was the first indication that there was probably some sort of scar tissue in her airway, from the trach, but we were holding out hope that it was because her airway was still under developed.

Riley's ENT had agreed to not do any "major" removal of scar tissue if that is what he found.  Mainly because we are trying to avoid any type of hospital stay right now.  He stuck to that promise but, did find a granuloma above where her trach sits in her airway.

Because Riley now has a Cochlear Implant he is unable to use certain tools during surgery.  The granuloma is also hard which made it difficult for him to cut it out.  They ended up having to intubate Riley as the doctor wasn't able to get to the granuloma like he normally would.  Good news, if there is such a thing when talking about your child's airway, is that if she ever needs to be intubated it can be done through her mouth.  Remember we want to always have a way to keep Riley's airway open especially in case of an emergency.

While in the OR the doctor injected a steroid in to the site which will hopefully loosen the granuloma and make it much easier to remove during the next procedure.  If not they will need to cut in to Riley's stoma site to make the removal.

Because of everything that went on in the OR they decided to keep Riley overnight.  Believe me I tried everything to get them to release us but, when the ENT and anesthesiologist want your child to stay it's best to take their advice.

Riley is doing fine.  She rested overnight and we were able to come home on Thursday.  We'll schedule the procedure again in a few weeks and hope that it goes smoothly.  Her doctor will know what to expect when he gets in the OR this time so as long as everything goes as planned it shouldn't be too terrible of a procedure.

Friday we got back to "normal".  Riley had therapy and Logan had his first Tball practice.  I've been waiting for Logan to start baseball for what seems like forever!  We have a feeling he is really going to enjoy it and Dave has enjoyed being at the practices and helping out the coaches.
Back at therapy!

Tball time!

Sunday we had Hans, Tia T, Uncle Mike and Mia over.  Mia is obsessed with Riley. In a wonderful way.  In a way that often makes me wonder what Riley is thinking as Mia is running in and out of her room.  From the moment she walks in the door she is saying "Ry Ry, Ry Ry" over and over again.  It is SO good for Riley to have the interaction with Mia.  She gets a ton of play time with Mason and Logan but, being able to be around her peers is great for her.  And Sunday was the first time Riley had her "ear" on, as I like to call her CI, when Mia was around.  Being able to "hear" familiar sounds is something we hope will help Riley to recall and recognize sounds that were familiar to her in the past.  We know it's helped her with just our immediate family and the difference in Riley's mood and the facial expressions that have come back to life as a result are priceless.
Ready to cheer on Pete! and the Seahawks

Riley's smile.  She LOVES her big bro

Our 3 blessings

Play with me Ry Ry

Ry Ry

Today Riley went on a walk with Grammie and Mason and her nurse.  My mom helps us out on Tuesday and Thursdays and Mason always looks forward to his walks!  We've been trying to get Riley out and about more with trips to Logan's Tball practice, the park and out to get fresh air.  I know Mason loved having his sissy at the park to show off for today.  And I'm pretty sure Grammie enjoyed it as well :)
Hanging out at the park with Grammie!


We continue to be reminded of what a wonderful support system we have cheering us on through the good, the bad and the okay days and we thank you all for that.  One day at a time, one foot in front of the other, we Fight On!

Dave, Megan, Logan, Mason and Courageous Riley!