Saturday, August 11, 2012

A Big Girl Bed!

We recently converted Clara's crib to a toddler bed, and she transitioned really well!  Last week, Rosalyn began pulling to standing on the safety gate to the kitchen so I knew it was time to move her out of the wooden portable crib/cradle and into Clara's crib.

Clara was able to try out a toddler crib at Pottery Barn Kids last Saturday and wanted to get under the covers all the way and asked for we knew it was time to pull the trigger!  It arrived yesterday and last night was the first night in about 3 weeks (except for 1 exception) where she stayed in her bed the whole night and didn't join us around 3am.

First day in a transitioned crib.  She would RUN to her bed for naps or bedtime.

After the original excitement wore off, it would take about an hour of screaming before she would fall off her bed (and into some interesting positions) and then finally realize that lying down was actually comfortable and then fall asleep.
"N.....New. Ta Ta Ta.....Actual big girl bed!!!!" She said.

She couldn't rest until it was assembled.  Took me about an hour and a half by myself while Rosalyn napped.  She's quite the poser!

I'm just now realizing that I don't have pictures of their new bedroom set up and all of Clara's new bed stuff.  We slowly built in a new softer mattress, a new comforter and new layering blanket over the course of the week for her as rewards and reminders that if she stayed in her bed all night until the sun comes up that she will get her new big girl bed. 

I'll post the full set up tomorrow.  I have great hopes for tonight especially since even Rosalyn only cried out once early in the night last night. I love me some sleep!

Saturday, August 4, 2012

The Playground: Her Way

Today was Clara's first time at the park where were were able to let her loose.  She decided what she did and where she played and what she touched.  Alan and I weren't so sure we like this new life of getting dirty.  Clean girls are much easier to...well, keep clean!  But it was fabulous to watch her and I got some great pictures!

"raining" sand

"I'm touching." - what she says whenever she wants me to know that she knows this is something she can touch now but couldn't before.

Concentration as she fills her fists with sand...

...and realizes she can bury her shoe.

"What's this?" after uncovering a large piece of mulch.

The first time she's ever touched a playground step with her hands - to assist her tiny self up a big step.

Hanging from a bar while Daddy spots her.

Again, "I'm touching."

Clanging away on the playground chimes.

First time on the swing without it being thoroughly disinfected beforehand.  And she had a significantly greater sense of ease holding on a swinging high from the get-go.

Rosalyn in the courtyard after our arrival home while Clara laid down in the grass and ran around in circles yelling touchdown!

Clara's Mall Friend

I intended for this story to be included with my picture of Clara on the couch eating her (my) sandwich:

As we were walking up to La Baguette to order lunch, a little girl came running up to Clara.  She wrapped her arm around her in a comforting, welcoming embrace and just looked at Clara and then Alan and I.  I declared, "Wow, Clara!  What a fast friend you have made!"

We stepped closer to the bakery and the little girl stepped away and back towards her mother.  Yet, just as quickly, the little girl was running back to Clara's side and grabbed a hold of her free hand mirroring Alan's hold.  She just stood there.

What most of you don't know is that Clara has had very few interactions with other children.  She has had a couple of very sheltered playdates with boys at our house, who she has learned to dodge as a fist or push seems to be coming her way, or she has seen children from afar.  Never has another child approached her and hugged or held her hand.

I looked at the little girl and asked her name.  As best I could tell, she said, "Holding."  Twice.  Clara looked at me and said, "She's holding my hand." The girl touched the top of Clara's hat and then held her hand again.  Clara, "She's touching my hat.  She's looking for Clara.  She's holding my hand." 

We all stood there for a full minute or two.  Alan and I were concentrating on pretending this was a normal and perfectly safe encounter as our hearts raced with panic.  Why wasn't the mother verbally or physically calling the little girl away?  What were we supposed to do?

But in that same moment, I felt God's hand.  He had sent this little angel of a girl to welcome Clara to the world of touch and safety and friendship in what was a previously forbidden and dangerous world.

The girl rejoined her silently observing mother as quickly as she had approached.  And, that was that.

It was a beautiful moment that put a smile on Clara's face, warmth in my heart, and us all one step closer to rejoining normal interaction with the rest of the world.

Trying on Halloween costumes at PotteryBarn Kids, among everything else in the store.

It was a fun day out and about and the girls fell fast asleep in the car on the way home.  We played in the yard with Rosalyn as Clara napped in the parked car in our driveway for 2 hours.  She's playing hard and loving this new life of adventure!

Friday, August 3, 2012

Today's request: The mall!

No McDonald's for Clara. She has commandeered my sandwich!

Just one picture?!?

You are totally right.  What was I thinking - only one picture after a 10 month absence?

Let me beg your forgiveness by sharing pictures of Clara at the Stanford Annual Bone Marrow Transplant Reunion this past weekend.  She wasn't invited last year because she was too recently out of transplant.  And this year she was only 1 of 2 pediatric patients that attended - although apparently 25 RSVPed yes and there have been 250ish pediatric transplants at Stanford since 1983.

This is what we call her "stinker face." :-)
She got a glitter tattoo of a sea horse! Oh my gosh its purple and blue!
She was given a choice of a white bow or a pink bow.  Apparently, she will actually leave her bows in if she has one of each!

She was thrilled with "her party" and loved being outside.  She was still under isolation restrictions but was given special permission to be in attendance without her mask despite the major construction happening at the hospital.

Remember all that concern about her weight gain and if she was eating enough?  Ha!  Look at that chub, will you?

Thursday, August 2, 2012

Oh Happy Day!

This week has brought two of the most incredible gifts to our family!

On Tuesday, we were given contact information for Clara's donor and are waiting to hear back from him.  The opportunity to get to know Clara's donor has absolutely filled my every thought.  His donation was given quite a bit of publicity, so we know a fair bit about him since finding out his name - although we have not yet spoken with him.  He is an incredible guy, and I pray our meeting is one that is as joyful for him as it is for us.

Yesterday, we found out that Clara's immune system is completely, fully, totally functional.  ALL restrictions have been lifted. 
  • She is no longer under isolation restrictions.
  • She does not have to wear a mask when going places
  • We do not have to avoid construction, or someone mowing the lawn.
  • She doesn't have to take ANY meds anymore.
  • She can play at the park, or go to a friend's house for a playdate.
  • She can eat anything she wants. Or as she says, "Can eat floor?"
  • She can touch anything she wants - in fact, she can roll around in a pit of mud if she wants.
  • She can fly on a plane and meet all her aunts and uncles and cousins and great-grandparents - some of whom have only seen her when she was 5 weeks old, but most of them have actually never met her and none of whom have met Rosalyn.

The list is incredible and most of it is the kind of thing that we all take for granted - yet, they are huge for her.  She is adapting quickly and understands much more than we realized about what was "dirty" before but that she is now allowed to do.  And the smile on her face while she looks at me and says "I'm touching." (a flower) or "I'm standing in dirt." is just incredible.

I hope I can pick back up with blogging.  I always did it out of necessity to keep you all abreast with Clara's treatment.  But please know that no news is good news for us.  In January 2013, she essentially reaches a milestone that puts relapse and other life events completely out of the picture.  We will consider her cured although that word can't be used until January 2016.

There is so much I wish I could articulate.  There just are no words for the joy we are feeling.  Instead, I'll offer you this:

Tuesday, November 29, 2011

Rosalyn Elise is here!

We thought it was about time to announce the new baby! We've been a little sleep deprived lately but will probably make a more detailed post shortly. Here she is: Rosalyn Elise weighing in at 7lbs 13oz and 20 inches long.