Positve Forward Motion

Today we had what I would consider a big appointment at the SCCA.  Georgia has successfully been off of Prednisone since July 11th, she's held her own, gained weight and today we met to see what's happening on the inside.
Based on how Georgia is eating, acting and playing I knew going into today the odds of it being a "good" appointment were in our favor-- that never seems to calm my nerves as much as it should.
She's grown taller, gained weight and internally, aside from some slightly raised liver numbers is doing well.  The bump in the liver function is minor but something that will be watched closely.  Shortly after our doctor and PA walked in the room I was handed a taper schedule.  The taper is for her Sirolimus, the big guns of her immune suppression, a step that is only taken when certain criteria have been met-- it's big.
The plan is this, we start the taper tomorrow, if all goes according to plan it will last five weeks.  Once she's off of Sirolimus all together she will be monitored for any signs of GVHD for six months as this is typically the time you would see it flare if it's going to.  I asked what the odds were, I did my best of letting go of expectations for the Prednisone taper and will try and do the same here but I needed to know.  Our doctor said he'd give it a 90% chance for success, based on where she is post transplant and the fact that she got bone marrow versus peripheral blood-- I immediately thought of our donor who was given a choice of what he was willing to donate.
During these appointments we often cover what Georgia can and can't do, come September 5th, the first day off of immune suppression, she's been given the green light to play in good ole' fashion dirt.  I don't think I will have her start making mud pies in the backyard but finally I will be able to let my guard down some with outdoor play.
I am so thankful that we get to take this next step but am certainly terrified as well.  Life won't immediately change once immune suppression is done but it will be a major milestone. We will maintain our conservative lifestyle until March as Georgia getting sick could flare her GVHD.
It's scary to allow yourself to think several months into the future, we've seen how quickly hopes and dreams can be taken away. 
I think probably to the outside world we're jumping up and down, cheering and so happy--  in reality, we're thankful.  When you have seen what we've have seen, full blown celebrations just don't fit the bill, it's more of a feeling of being grateful and respecting the process.  As we made our way through the Prednisone taper I didn't cross off weeks that we'd finished, I didn't talk about being done and even left the taper schedule up on the fridge for a few days after we were done.  I guess it was my way of not provoking any unwanted attention from the "Prednisone Gods." I have a feeling the same process will be followed, tomorrow I again let go and begin.

G.I.R.L.

I'd always heard about nature versus nurture and always believed it was a combination of the two.  I still believe this but had no idea how much is not taught, how much just simply is.  I wouldn't consider myself a super girly girl so I've been so surprised to see twirls happen without teaching, tutus picked without me giving any preference.  Georgia has been emerging all on her own.  A few things over the past couple of weeks have given me a glimpse into what the future has in store...

A couple of weeks ago we got a Mini Boden catalog in the mail, I'm still not sure why we get these because these darling kids clothes are far from budget conscious.  Georgia immediately grabbed the catalog and started looking through it - the kids, I thought, it must be fun for her to see the kids.  Ha!  Within seconds I was hearing oooo-ing and ahhh-ing, "Mama, I wanna buy this" and "Oh Mama, this is cuuuute."  That's right she was thumbing through the spendy catalog picking out her fall wardrobe.  I said, "Georgia, how much does that cost?"  Every item, "five-dollars Mama." 

Today I had to wake Georgia up to head to Children's for an early blood draw, this hasn't happened in a while and was met with sobbing and repeated "I don't wanna get a poke."  I felt awful and promised her a trip to the park and said we could get the new bucket she'd been wanting.  I made good on the park and when it was time to go she asked about getting a bucket.  I told her we could go to Target and pick one out on the way home, she stopped, "no mama, clothes."  I said, "you choose, you can get a toy or one item of clothing at the store."--- no hesitation, "clothes."  We headed to Target and she browsed for a short time before telling me she'd found what she wanted --- a dress, cotton white top with colored stars and a tutu style skirt, she was thrilled.  I made sure she saw all of her options but she was certain this was the one.  No mention of a toy, no mention of a bucket, just grinning from ear to ear with her new dress in hand.

Clearly I have myself a girly girl and you know what, it's so fun.  My future holds lots of dress up, telling her even though everyone else has it, no she can't wear the uber-mini skirt and many trips to the mall.  To top off girling things up, last week I was putting Georgia to bed and was sure she was almost asleep, it was silent, then I heard in a voice plain as day... "I like boys." 

Heaven help me!

Olympic Hopeful

Last night Georgia and I watched a bit of the Olympic opening ceremonies. I tried to explain to her that the athletes were the best in the world, that this only happens every four years - that the Olympics are something special. She wasn't overly excited about the opening ceremony performance but once she saw the athletes she started pointing to the TV. Two gymnasts were interviewed, when she saw them tumbling and flipping around bars she looked at me and asked, "Mama, I do that someday?"  I looked at her and said, "Georgia, of anyone I know you my love could be in the Olympics.  she said, "you come?  I said, "I wouldn't miss it!"  We chatted about it a bit more and by the end of the evening she'd decided she wanted to be a runner in the Olympics.
Just before bed Georgia asked me, "Mama, you be in the Olympics?"  I smiled and said, "oh, I'm too old to be in the Olympics."  She looked at me, tilted her head to the side and gave a little sigh, she said "that's a bummer."  Well put my friend, well put.

Here is a glimpse of our future Olympian stretching before her big run.

Movie Maddness

I love that we live in a time where it's easy to capture little moments.  Georgia has become very accustomed to me whipping out my phone to take a video of something she's doing and I'm not sure who enjoys watching them more - her or me.  Here are a few recent clips....

I used to wear heels everyday, now they are buried in my closet.  Georgia loves digging them out and strutting her stuff.

First time flying a kite!

Daddy went for a swim... well then I want to try!

Last week we took Georgia to Camp Long, after hiking around she and I headed back to the car for a snack while Brian checked out the main lodge.  Georgia was looking out the sunroof for daddy... or should I say Brian.

Summer Getaway

A few weeks ago I was chatting with our neighbor, telling her that we were trying to go out of town for a couple of days.  We'd been trying to find somewhere that wasn't too far away, this being our first post transplant adventure we were nervous about finding a good spot for Georgia.  A little while later I got a call from our her, offering her parents cabin that is just outside of Darrington. 

We have been so lucky to have Gretchen and Andy as our neighbors, Georgia loves to play with their kids Jack and Sadie but most importantly they get it.  Gretchen's mom had a stem cell transplant not long before Georgia had her transplant--- they get it about being extra cautious, about not sharing germs, about how important it is to keep Georgia healthy.

We were so excited about the offer, it sounded like a great place for all of us, and it was. 

First I should start with packing, I told Georgia we were going to "Sadie's Grandma's cabin" and that we needed to pack some clothes.  I brought a bag into her room and before I could blink Georgia had opened her drawers and was clearing them out, putting everything in the bag, ah, just like her mama!  The "cabin" is much more of a house and is in such a beautiful spot.  From the deck you can see Whitehouse Mountain, there is a huge garden with raspberries, snap peas, rubarb and more. 

Our second day there we took a hike to some waterfalls and ended the day with a fire outside.  We took walks to the river where Georgia threw rocks and went wading in the water, we relaxed, had fun and enjoyed spending some time away from home!

Thank you to Gretchen, Peg and Jim, we had a wonderful time.

 View of Whitehorse Mountain from the deck

 Fresh raspberries

 Trying out some new wheels

 Blazing the trail

 Three seconds of relaxing by the fire

 This is the face of someone coming to pour water on me!

Clearly it wasn't lost on Georgia that I was taking lots of pictures - the last night there she carried around Brian's headlamp pretending it was a camera saying "cheeeese!"

18 Months Post Transplant

Last night as we were sitting by the fire outside on our first post transplant vacation (more on that later) I watched you run around, encouraged you to come and "relax" by the fire then watched you run around some more.  For a split second I felt frustrated, wanting to just sit and relax but as quick as the feeling came it was gone... I smiled and watched you, never stopping---I am so thankful.  Eighteen months ago we were on day zero, waiting for the bone marrow to arrive from Germany, your body didn't have any of its own, it was such a critical time---and look at you now.

Today, here you are, so full of life and a force to be reckoned with.  Happy 18 months post transplant my girl we love you, another milestone achieved. 

Happy 4th of July!

Yesterday Georgia enjoyed sunshine, cousins, food, but fireworks ... not so much.  We spent the first half of the day at home then headed over to Leslie and Chad's for a BBQ.  The weather was beautiful so we played outside but when the fireworks began Georgia was ready to head indoors - too loud!  I didn't get any pictures of the kids in their red, white and blue but all looked darling!

 We received some darling ballet outfits from our neighbor and they are such a hit, sequins and tutus have become day wear at our house!

 I see ballet lessons in my future

Lauren was asleep, Blake was out with the daddies so Georgia came inside to snuggle with us!