HAPPY REBIRTHDAY!!!!!

The happiest of rebirthdays to my fabulous Selene!!!

I thought I would have so many beautiful words to express my joy, but I'm coming up with nothing. We prayed, you prayed, and this year has been an absolute miracle.  I feel completely unworthy of God's grace through the past year.  It's humbling to know that while he carried us on our road to joy, that He was comforting someone else's path of sorrow.  We'll never know why we are given the blessings that we are, but I do know that I will thank Him every day for the health of my girls.

We are also so thankful for our amazing family and friends.  I even feel that in some respects that this year was almost easy...easier than I ever imagined it would be. Can I say that? That it felt easy? Sure, the hospital was scary and we went through some hard times. But the packages and letters brought excitement to Selene's day and the prayers filled my soul with peace.

All year long our friends juggled supporting us while adhering to our rules of no shoes, insane hand washing, wearing masks that get all hot and sweaty within 3 seconds and just basically accepting us disappearing for a few months because it was too complicated to arrange visits.

We are overjoyed that the next year will be filled with our families being together, seeing friends, play dates, celebrating friends' weddings and babies, vacations to San Francisco, the beach and ultimately a Wish Trip to Disney early next year. We are living a Blessed life.

I needed a little project to reminisce over those big moments in the past two years, so hopefully you enjoy this not so short video I put together.

Selene's video

Truly, here's to 2016!

Starting the day with waffles!

"I want syrup in each gem." Anything for you today kiddo!

When you wish upon a star...

A few weeks ago we found out some special news. Selene is being granted a wish by Make a Wish! We are truly humbled at this amazing opportunity and gift. It's hard to feel deserving of such generosity but at the same time we are excited for her to have the chance to be treated like royalty, along with Ainsley whose been such a champ over the past year. And Kalina gets to go along for the ride.

We started talking to Selene about how she will be able to choose to go somewhere, meet someone, become something, etc. We didn't want to put any ideas in her head just generally explain the process. Today Susan and Michelle, Wish Volunteers, came to see us bearing a bag of princess toys for the girls. They asked lots of questions about all her favorite things and when they asked where she would want to go she said "A princess castle!" She then proceeded to tell them all about how she wants to play dress up and some other things about sleeping in a bed, kids are weird and I have no idea what she meant.

So we will be off to Disney World to dress up like Princesses! And if Ainsley has her way, a nice day at Diagon Alley and Hogwarts!

For as quirky and delightful as Selene is, she's super shy and rarely opens up to strangers. They must know how to find the most special volunteers because she talked, answered their questions, and drew lots of pictures for them to take.

If you know me at all, you'll know that I'm obsessive with planning and researching everything. So when we found out about Make A Wish I started reading stories. I cried for two days. I cried at the happy, celebratory stories. I cried at the sad, final memories stories. I'm so grateful that we will be celebrating on our trip!

Selene and Susan discussing all their big princess plans!

Writing with their fancy pens.

Kalina is excited to be included in the big girls'' fun.

They really loved Susan!

"I love Chop."

Receptionists hang children's coloring pages all over the walls of the check in desks at Children's Hospital. As I admired them while checking into Cardio I saw this cute little Minion page with a big "I Love CHOP" written on it. I sing their praises all the time, but kids tell it like it is.  Selene has loved her trips to the "hostital." She loves their snacks, the stickers and the fabulous nurses and doctors. I guess it's good then that we still get to go back ;-) I thought we only had to go back at 6 months, but apparently its now every 3 months for the next year.

Anyway. The appointment was great! Dan and I got to go together while Nana managed Ainsley and Kalina. After the obvious drive through Starbucks (tried the mobile order for the first time! I ordered while putting shoes on and packing my bag and was in and out in 30 seconds!) we were on the way. Selene was pretty uninterested in us and preferred looking out the window. Thankfully the city guy was driving because he managed to use all his shortcuts around the ugly traffic and we made it on time (despite leaving over an hour to get there, I hate morning traffic!).

Thursdays are waaaay chiller than Tuesday clinic. But we still had to ask the lovely nurse to get the lab moving since we had an 11:00 appointment in Cardio.  They took us back to the lab (the new lab in Buerger is AMAZING) and Selene made a request for a tv show. Because clearly that's more important than the needle and 12 vials sitting on the table.  After an uneventful blood draw we got to see Ellen and the team. Sadly doctor Olson wasn't there, they said he was sad to miss Selene :-) But we were basically given the all clear to live our lives! We do have to wait for the results to come back on whether we can get her vaccinated. They say it's not uncommon to need to wait a little longer since they want her little immune system all set to pump out those titers.

After that fun appointment, that involved way more laughing, giggling and tickling than you would expect from a scary hospital we bounced over to Cardio for her EKG and Echo to make sure her heart is in tip top shape.

Our final stop (well, before Jimmy Johns because JJ is the best) was to say hello and thank you at the BMT unit. Luckily some of our favorite nurses were meeting in the front hall way. We got to say hi, give hugs and give them some snacks we made for them as a thank you.

By then Selene was whooped. So Dan carried her back to the car (after our JJ stop, I was famished, no way were we going without my Turkey Tom!) Where she had plenty of energy to eat her sandwich and then the cookie.  She also proved that she has a great grasp of bigger and smaller. Because when I asked for half her cookie and she broke it she almost handed me the big piece but promptly switched the piece she offered me after a quick size assessment. Thanks Kid. But hey, at least she gave me more than the usual crumb. She must have been in a great mood.

Overall it was a little anticlimactic. I'm not sure what I expected. Balloons and confetti maybe but overall I feel joy and relief at this huge milestone! Next big moment on deck-March 9!

There was a ton of giggling and kicking going on here.

Reminiscing

As I sit here getting ready to go to bed I'm thinking about where we were last year. Frantically packing. Trying to have all the comforts of home while at the same time keeping it light (more stuff=more cleaning). We had no idea what would come. Worrying about things like not letting Selene eat in the morning because of her broviac surgery, what we would do in the hospital for 6 weeks, how she would handle chemo, what she'd look like bald. Restlessly sleeping, if you could call it that.

It's comforting to sit here knowing it was all for naught.  Tonight, I'm going to go to bed and while I won't be sleeping, it will be because I'm rocking a baby and calming Selene's fears of the dark.  Tomorrow we'll wake up and make coffee and oatmeal. Maybe we'll go shopping before nap time, maybe we'll do crafts. And I'll thank God for bringing such healing to our family.

One year ago. Oh how much can change in a year.

Closing In

Feb 2 Note: I wrote this last month and forgot to publish it. It's short and sweet.

Almost at the end! This was Selene's second to last IV antibiotic. Thankfully since this was a 6 hour day.  Of course she never stops smiling through all the arm hugs, sticks and waiting.

Dan's boss and work family have been amazing, letting him take over these appointments. How blessed I am to have him to take care of this girl!

Clinic time

all smiles all the time

My helpers!

This face warms my heart

Little did they know this snow was a drop in the bucket.

Sisters

"My bleeding is getting messy."

I know life is all relative and this is all trite but today was a tough one in the scheme of my sanity.  I decided that I would take Selene to the "hostital" today.  Which means last night Kalina was up from 12:30-3:30. No matter what I did she wouldn't sleep. Being in our bed meant pulling my hair, slapping Daddy's face and crawling to the foot of the bed. Being in her rocking chair meant straining to grab the curtains and doing her best to rip them down. Laying in her crib meant screaming bloody murder. Good times.

I managed to get us up and out the door with Dan home to manage the other girls. After a quick stop at Starbucks, the sun was shining and it was open road...until Lincoln Drive.  Waze kept telling me to turn left. When Waze tells you to do something, do it.  Traffic was crazy, I didn't know Falls bridge was closed and by the time we got to the parking garage Selene said "Mom, can you just go the right way next time?" Ok threenager....

After a few awkward shy minutes at music therapy (for a kid who puts life to music she sure clams up at music therapy) we got called back to start the IV. I thought things were going to go great when the nurse said that everything was running smoothly today. Then she couldn't get the IV to thread. Switched hands, and then she couldn't get a blood draw through the IV.

We had a lovely visit with Ellen and Dr. Bunin and went over the details of next appointment-Echo, Ekg, blood work, all the good stuff to clear us!  Then we were sent to have the lab draw her blood. The only time she cried was when I made her leave before Palace Pets were still on.  It makes my heart swell when everyone comments on how amazing and cooperative she is. 

The only time I was a little mad was when she was digging in our snack bag and I asked her to wait while I packed up. I looked over just in time to see her pull the lid off of my cashew/sesame seed/craisins mix and splatter it across the floor.  Of course she was angry that I wouldn't let her eat them off of the floor...I'll admit, I considered for .02 seconds eating those big yummy cashews off of that dirty floor. Sadness.

Things improved once we got settled in the day hospital and hooked up to our IV, at least for a little while. At one point the nurse noticed Selene's arm turning a little red. We thought her ID bracelet was on too tightly so we cut it off. An hour and a half, and a few raids of the snack room later, we were on our way home.  We had just pulled onto the highway when I hear "My bleeding is getting messy." Ok ok. I look back and scream. There is blood soaked through her bandage and all over her sleeve. I gave her a tissue, which she tried to hold on. My heart was racing and before I could get to a place to pull over she fell asleep. I decided we'd just figure it out at home.  I took her arm to clean it up and it was puffy and firm. Totally swollen. I called clinic and they said to just keep it elevated with a cool compress (we were already doing that). It doesn't seem to bother her and she can wiggle her fingers, so here's to hoping she wakes up with a normal arm.

I can't believe next month is our 1 year appointment and that a few weeks will bring all sorts of one year anniversary's, re-birth celebrations and memories that at this point seem to be a lifetime ago.

May everyone sleep through the night tonight, including me.

Playroom cupcakes

Her territory

Snuggled up in her warmed blanket

You can't see her bloody arm and I didn't think people would enjoy a close up :-)
 It was a long day!

How much a year changes!

I honestly can't believe I'm sitting here looking back on 2015, where did that year go?!  This day last year I couldn't imagine being past it all and yet here we are.

I went back to read the post I wrote New Year's Eve 2014:

"2015 will be a year that brings new life in more ways than one, great fear, great joy, anxiety, prayer, faith, and trust.

My Timehop yesterday was 5 years of "What an amazing year we had, can't wait to see what the next brings!" I can honestly say that I have never wanted to be on the other side of a year more in my life. My hope is that NYE 2015 will be of our family of five, lighting sparklers, drinking sparkling cider and thanking God for a year that brought health, healing and joy."

2015 surely did bring all that we had imagined with the transplant, treatment, quarantine, and hospital visits, but it also brought so much more.  It brought love, support, family and friends. Joy, excitement, health and new life.

And here we stand, drinking our cider, setting off poppers, going to see Christmas lights with friends, as a happy family of five.

I know for certain we would not have sailed through this year without infinite love from all of you.  Thank you, from the bottoms of our hearts.  We appreciate everyone and look forward to celebrating a different 2016. Living life with thankful joy.

Here's to a beautiful and healthy 2016!!