Tuesday, April 9, 2013

Settling in....

Getting settled has been exhausting!  We're trying to get everyone on the same page as far as Riley's care and make sure we all settle back in together as a family.

We spent the weekend just enjoying each other and spending time as a family and with family and friends.  It was nice and SO needed.

Our biggest news is Mason is WALKING!  He started the toddler swagger a couple weeks ago, you know take a few steps, pause and realize what you've done and then plop back on the floor and crawl away.  We knew he was so close to really getting it and he has!  It is so much fun to watch him cruise around and he is crazy!  Like I've said before he is our fearless, do anything, try anything baby and as we watched him climb the stairs, palm a ball and dive back off of the stairs this weekend we realized he is going to really keep us on our toes.

Saturday Tia T, Uncle Mike and Baby Mia came over.  They brought our favorite tri tip from the Milazo's deli/store and most delicious salads we've ever had.  If you read this Nick I NEED the recipes!  It was a beautiful afternoon after a dreary morning and we enjoyed just hanging out in the backyard watching the kids run wild.  It was just like a Saturday we'd do before Riley's illness, filled with good friends, food and drinks and it was so nice.

Sunday morning Shane stopped by and got to witness Mason and his crazy ways!  Later in the day Jen Jen and Casey came over and brought a late lunch/early dinner which we've been enjoying for the last few days.  Grammie and Pa Doug and Grandpa and Grandma also stopped by.  It was wonderful being able to have so many visitors for Miss Riley.  We know she enjoyed all of her visitors and really feels at home.

Monday, Mommy and Logan had a much needed movie date to see the Croods.  Super cute movie that almost made mommy cry at the end.  Logan loved wearing his 3D glasses and munching on his hot dog, nachos, popcorn and Slurpee (what can I say the kid's been through a lot the last few months, we enjoyed our movie date!).

We've been trying to get to the piles of mail, laundry baskets of clean clothes and closets that need organizing.  I finally spent a good 4 hours in the office today and it was amazing how much I was able to get done.  Thankfully, my mom is still willing to come on Tuesday and Thursdays to help with Mason and hang out with Riley so mommy can get some of these things that have been neglected checked off of her never ending list.

Tomorrow we head to Riley's pediatrician in Arcadia for a check up and probably a few shots.  It was decided before we left Healthbridge to hold off on her 1 year old shots and other recommended shots for the time being due to not wanting to upset Riley.  We'll also be discussing her long list of medications and how we proceed from here.  Dave caught some sort of bug late last week and has been on antibiotics so we are hoping the extra phlegm Riley has had the last couple of days is only due to the weather and not a shared family cold.  We'll find out tomorrow.

I wish I could adequately describe the difference in Riley's demeanor since she's been home.  She rarely tones, looks all around, focuses on her family and generally looks happier and better.  We've received her evaluations from Regional Center and they have placed her on most charts at a 1-3 month old age developmentally.  That was a hard report to read but, it is reality.  Thankfully, the services and support exist to get Riley the help she needs to re learn all that has been lost.  We tell her multiple times a day how proud we are of her and again how brave and courageous she is.  Logan runs in and out of her room whenever he can to just talk to her and hold her hand.  Mason wobbles in the room and they lock eyes in a way that only twins can do.  These are all a part of Riley's overall therapy that she couldn't get in a hospital setting and we know it is helping her in so many ways.

One thing that I have struggled to articulate well is just how thankful and appreciative we are of all of you.  It all started in the really dark days at CHOC when we had deliveries of hospital goodie bags, cookies for the nurses or cards, emails and texts.  The support continued with notes, stuffed animals, blankets, pj's and clothes from Grandma etc. and culminated with welcome home flowers (Thank you Ron & Chris), books, meals and more.  I had a hard time tonight as I met another delivery guy at the door (Thank you Kendall! and thank you Wendy for last night's delivery!) not breaking down and crying.  He saw Riley's sign out front and said Congratulations and I really had to step back and realize that even though I don't think he knew what he was congratulating us for he was right.  We are the luckiest family in the world to have our baby girl home and it really wouldn't have been made possible without all of the prayers, love and support we've received from all of YOU.

So thank you.  Thank you for supporting us through the hardest days and continuing to support us.  Our family is so thankful and overwhelmed with the kindness we have been given and continue to receive.  It makes the days easier to get through knowing Riley has such a large Team behind her.

No one ever said life would be easy and trust me I have learned over the last few months that life can truly test you in ways you never ever imagined but, you can make it and with support like we've received anything is possible. 

Thank you for being on Riley's Team. 

Fight On!

Dave, Megan, Logan, Mason and Courageous Riley

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