Celebrating Nine

On Gracie's birthday, she was slow to get moving in the morning... still recovering... so we let her dictate the pace of her special day.  We gave Pearl the day off and spent time hanging out as a family.  In the afternoon, instead of going to therapy, all five of us went to the park - - for the first time ever!  (And, it was Gavin's first time not sleeping through an entire park outing!)

We had lunch first, Gracie and Preston had cupcakes and then it was playtime! And, I think it's safe to say that Miss Gracie got plenty of therapy in during her park play!

Outside, enjoying the beautiful day... happy girl

Gavin - two months exactly
Looking a ton like my mom and grandfather in this picture
(I like my mom's theory that babies go through phases of resembling many relatives so that we remember all the people involved in making that baby!  That being said, Gavin has, in many pictures since birth, looked a lot like my grandpa.  I need to do a post just on various resemblances!)

How to Eat Destroy a Cupcake

Heading to the swings... super happy!

Though she requires support for balance, Gracie's motor planning while walking on a balance beam is excellent.
(This is an IEP goal... check!)
For someone who is monocular, has a field deficit and asytgmatism in her sighted eye, Gracie compensates remarkably well.

Loving the zip line!
She only gets to do this when Daddy goes to the park... Mommy is too short!

Hold on and twirl!!!
(Another one that only Daddy can help her with.)

So much JOY!

See John's face...?  He is saying "Whoa!"
Gracie lightly bonked her head on the metal wheel... and I said, "Oops... be careful."
John replied, "That wasn't me... she pulled herself up and hit her head!"
It just shows how strong Gracie is - - though she couldn't hang there independently, of course, with John's support, she was able to pull herself up higher. 

Working on the stairs...
Again, motor planning isn't Gracie's issue - - she knows exactly what she needs to do.

Almost there!
Balance and use of her strength (and muscle mass) are some of Gracie's biggest challenge when trying to walk or climb stairs.

While Gracie had "park therapy," Preston was playing monkey and climbing trees.

Mommy with her birthday girl
John took this after we got home so that there would be some proof that I was actually present!

That night: more cupcakes, mint chip ice cream (because it's tradition!) and presents.
Miss Gracie loved everything she received, but went crazy over the Polly Pocket dolls!

Happy 9th Birthday, Gracie Girl

The last few days were terrible for Gracie.  Since Wednesday evening, she had been in a dark room, eyes covered, miserable, retching and crying from the pain when awake.  Sleep only came from pure exhaustion caused by the former. There was little reprieve during this abdominal migraine and its severity was reminiscent of the ones she had when she was much younger and they were brought on with a vengeance by stress.

Thankfully, the fog lifted little by little on Sunday and, by mid-afternoon, though she wasn't back to her baseline, she let me play dress-up with her for her birthday photo shoot.  (She was exhausted after all the primping, playing and posing and ended up taking a long nap.)  I had hoped to get one great shot to use. Instead, I got so many I couldn't possibly choose. Perhaps it's because she was so sick for so many days that seeing her bright, happy expressive face made me want to use them all. But, I think it's just really because they are that good! ;-)

Sweet, sassy daughter of mine...
How on earth did you get to be nine?

Sitting so pretty

Using her walker, Gracie made her way from sitting on the bed (I liked the colors there!) to her mirror, where she prefers to hang out (stand, sit, stand, let go a bit to test her balance,sit, repeat!).  At the moment I took this pic, she very precariously balanced in the walker without using her hands.

It's hard to see here in the pics, especially with the fluff of her tutu, but she very carefully transitioned herself from her walker to the bar.  These transitions are something we are working very hard on... and she gets more and more daring as she feels comfortable with her position. 

Love this smile... it was missing for several days as she suffered horribly from an abdominal migraine that was, no doubt, worsened (or possibly even brought on) by a stressful day at school on Wednesday.  She was in the dark for days, feeling miserable.  If she was awake, she was crying and retching.  And yet, when that fog of misery lifted, she instantly became her regular happy, playful, busy, lovebug self. 
There is a lot to be learned from that kind of resolve.

I love this so many reasons.
The fact that the puppy is also pictured is special because she was in Gracie's nursery, sitting on her bookcase, for weeks before she was born.

I find these mirror shots to be, well, quite amazing.
Look at Gracie's reflection... so obviously smiling.
Look at the side that is not in the mirror... she appears to be serious.
The lesson... pay close attention... or you might miss what's really going on.

This expression is so quintessentially "Gracie."

Hugging her puppy in one hand, leaning and holding onto the bar with the other.

I love Gracie's hands... they are loving, gentle at times, rough (without intention) many others and
so very expressive.
Whether she uses them to sign or to access augmentative communication devices... they are her voice.

My beautiful, strong, spirited, loving warrior daughter.
She gets knocked down in so many ways, all too often, and manages to pick herself up and keep on going.

(See why I couldn't choose?!)



Dear Gracelyn Marie,

You are nine today. Nine years old. It happened in a blink and yet, it's been a long, winding road to get here.

Your eighth year was full of many ups and downs. Thankfully, with regard to your health, the downs were not nearly as terrible as they were in your seventh year... no major setbacks and no hospitalizations.  That's pretty darn amazing and we are grateful.

The biggest downs were caused by those around you.  You were let down by so many who, by their very role, were supposed to protect you, care for you, nurture you.  Even I let you down by not protecting you better from all of that.  I am trying really hard to let that go, not dwell in a place of guilt, and move on so that I can better protect you and find the right people to surround you.  One such person is Pearl.  We are so blessed, after four other nurses since August, to have found her.   She takes wonderful care of you, advocates for you and, clearly, respects you.  She has, in just a couple of months, learned a great deal of sign and understands so much about how to engage you - - that is a tremendous gift.

Because of the inconsistencies in your care and other things that were happening (or not happening) in your world, it took you a while to trust her... I don't think you believed that she'd stick around or treat you right.  It was so sad for us to see you that way as it went against your very nature.  You are so loving, social and sweet... you are curious about others and don't hesitate to "introduce" yourself in your own way.  And, yet, that social little girl disappeared for a while.   We have been speculating what might have been the cause and now I believe we have finally figured out all the reasons for your hesitancy, sweet girl, and... suffice it to say... problem solved.  I am just so very sorry that it took us so long to put all the pieces together in order to make your world better.  So very sorry. 



For instance, you are literally trying to cross rooms... by walking.  Perhaps some of it is from jealousy (you are furious when our dear friend, Rachel, holds Gavin... you don't want to share her!).  Twice now you have taken a couple of steps between two chairs, allowing yourself to not hold onto something for a brief second as you reach for the support of the chair you're trying to reach.   Granted, how you're feeling plays a huge part in what you do and when you do it, but when you're determined, you can do anything.  Daddy said just the other day, while watching you do some pretty crazy things that prove how incredibly strong you are, "You know, she is going to walk... sooner than we think."  I think he is right.  And, even if he isn't, I will never stop believing that it's possible.   

You continue to astound us with your resolve and spirit.  There isn't a day that you don't have discomfort of some sort... between your central nervous system issues, your joints bothering you, constant issues with nutrition, sinuses and your ears, the list goes on and on... and yet you, Gracie, are never down for good.  The moment that discomfort passes, you have smiles and hugs to give, you are itching to be busy and back outside again.  You are anything but meek, and for that I am grateful.  Your spunk and will serve you well.  You never cease to amaze us with what you can do, what you know and what you can learn... when we least expect it, you remind us.  You are extraordinary and we promise to make sure that you are only surrounded by people who believe that about you and are willing to help you thrive. 

You are, on your ninth birthday, on the brink of so many changes.   I am full of hope that these new doors that are opening will lead to paths that take you great places.  While your journey is never straight and easy, I know that your strength and determination will allow you to reach your fullest potential.   You are our extraordinary, miraculous little girl... and Daddy and I are so honored and privileged to be your parents.

All my love,
Mommy

Gavin (Month Two)

Okay... so technically, you're 8 weeks today, not two months.  But your two month birthday (Monday, April 16th) is the same as Gracie's 9th birthday and, well, I think it's fair that we save that day for her!

You started spitting up like crazy (which is not like you) when we started these pictures,
so, soaked shirt it is!
Even through all that "urpiness," you were content as can be.

It's funny how red your hair looks in all your pics. 
There's a slight hue right now, but in natural lighting, it's getting blonder by the minute.

That's my happy, happy boy!

In the last month:
- You grew a smile... and each day it brings us more and more joy.  So far, daddy gets the most.  You hear his voice when he gets home from work and practically smile without even seeing him.
- You continue to be so laid back. I keep saying that I am afraid I will jinx it, but I think it's pretty safe to say, at this juncture, this is your personality... at least for now!  You are one "zen" little dude.
- I started "wearing" you when you were one month and one day old. Like your sister and brother, you were never a fan of swaddling. But, man oh man, Squeak, do you love to be worn! It's the same thing, really, but I think the reason you like being in the Moby Wrap is because you're right up against me. I love it, too, and it keeps my hands free which, in this house, is key.

Just like the pics I took to mark my belly growth... only now you're outside!
Sadly, this is one of only a few pictures I have with you since you came home.  We need to get better about that.

 - We've loved watching your blonde eye lashes appear day by day. It's amazing to see how they suddenly start sprouting... it's like watching a time-lapse video!
- Your hands are fascinating to you... and to me. I love baby hands... and since you're my baby, I really love yours! They are extraordinary and beautiful... and they've already grown so much in such a short time.

- You love nursing (me, too) and, thankfully, also easily take a bottle when necessary.  Clearly, you're not hurting for nutrition.  ;-)

You are 7 weeks, 6 days here. 
Your two month appointment isn't until next Friday, so we will get your official stats then. 
By my scale, you are already roughly 11 lbs, 10 oz.
(You were 12 pounds even at your appointment!)

- You started (in just the last few days) sleeping in a 6-7 hour stretch at night.  I am not holding my breath that this will last... it may just be a fluke... but I am enjoying it for now.  It makes it a lot easier to take care of your sister if you're not awake all night, too!
- You sleep mostly in your bassinet and nap in your swing. You seemed too small for your crib until recently.

On your 6-week birthday, you took your first long nap in your crib.  You look so tiny in this picture... now you fill that space much better and it's only been two weeks.  I know it's time to move you in there and pack up the bassinet, but I want to wait just a bit longer!

- You've gotten better and better at tummy time.  It wasn't your favorite unless you were lying on me, but now you're tolerating longer and longer stretches on your Gymini playmat. 

These pics are from the very beginning of the month. 
You are much stronger now!

- You love staring contests with Gracie and Preston and listen very intently to anything Preston says.  A couple of weeks ago, you were awake from 5am-9am.  Preston went and laid on our bed with you and I walked into the doorway unbeknownst to either of you and just listened to your him chatting away to you. It was so very sweet and made mommy cry big, happy tears. You're so blessed to have a brother with such a big heart to love you and teach you and a sister who is fascinated by you and wants nothing more than to be around you and Preston.

This was taken after Preston's baseball game when you were just 5 1/2 weeks.
I LOVE how you two are looking so intently at each other.

Your sister LOVES you to pieces!
And, since she's got no concept of how strong her grip is, she almost does love you to pieces!
We have to be very careful!

- You love Toby and don't at all mind (even though I sort of do!) it when he licks your face. He is constantly sniffing you and insists on sitting right up against me when I change you on the family room floor. You are "his" baby!

We had just gotten home, Gracie had done some serious "Gracie Yoga" and then sat up to get a better look at you.
Toby, apparently, was making sure Gracie understood that you are "his" baby!

- You continue to be like a sleeping drug for me.  I have to really concentrate on staying awake when I hold you...

See... I'm out like a light. 

You are such a complete joy little doodlebug.  Your sweet, easy disposition serves you well in this family because, let's just face it, sometimes you have to wait a little longer for your needs to be met.  If Gracie is pulling out her trach and Preston is going a million miles an hour, I might have to ask you to sit tight a little longer than my preference or yours. Hopefully, you won't require too much therapy later in life!
Preston says a million times a day when he kisses you, "You're so adorable and lovable and precious." He's SO right!

Love you the whole world,
Mommy

** On your 2 month appointment, you weighed an even 12 pounds and were 22 1/2 inches - - though I am not all that confident in the nurse's measurement.  I think you're about an inch longer than that. **

Eggstravaganza

On Good Friday, neither Gracie or Preston had school, so Pearl (Gracie's awesome nurse... finally we have a great nurse for Gracie!) and I took the kids on a "field trip" to the Eggstravaganza at Irvine Park Railroad. It was a fun afternoon - - though it got warm as the day progressed and both Gracie and Gavin had their fill by the time we saw the Easter Bunny. Gracie was repeatedly signing "ready" (as in "ready to go") as we waited in the (thankfully) short line to take their picture with the bunny and Gavin melted down right when we finished. Preston was very impressed that his baby brother didn't cry when the Easter bunny held him.   And though Preston did not have a meltdown, he was sound asleep ten minutes into the car ride home!

This was, by far, Gracie's favorite part of the day. 
Pearl helped both kids decorate cookies while I took pics and kept an eye on Gavin.
Gracie would have stayed and decorated cookies (and herself) in frosting and sprinkles all afternoon!  Preston enjoyed the decorating process, too, but much preferred the process of eating!

Open wide!

I love this picture!  She is as happy as can be!

Pearl and Gracie
We are so very grateful for Pearl... Gracie LOVES her and so do we!

Basket Heads and Chocolate Bunnies
The egg hunt wasn't particularly fun for either of the kids... it was way too crowded which prohibited me from helping Gracie get eggs on her own and the swarm of kids and parents bumping into her chair did not (understandably) settle well with her.  Preston quickly grabbed his eight eggs, gave Gracie his basket and took hers to retrieve her eight.
They both had way more fun putting their baskets on their heads!

I took a bunch of pics with my camera, too, but this scanned one that I paid for really was the best shot of them all. 
Gracie isn't too furious about being hot and sitting with the fuzzy, warm Easter Bunny and Gavin isn't yet covering his face with his hands!

Egg Dyeing... Serious Business

This cracks me up. 

We hadn't yet mixed the dye pellets with vinegar and Preston was so stressed out that Gracie was reaching over and grabbing the cups.  He had been put in charge of putting the right colored pellet in each cup and was quite concerned that Gracie was going to mess up his job! 

It also cracks me up because Gracie had on a shirt... and when I took the cup to add the vinegar and water, she stripped it off in two seconds flat (her house, she's allowed to at home!).  She must not have wanted to ruin her cute top because, ten minutes after it came off, she dumped the yellow cup and was covered in yellow dye!

There was a lot of concentration going on during this process!

The finished products

Faces

Playing with my new camera means it's in the kids' faces... a lot... even Toby's. 
The beauty of some of the lenses is that I can appear to be right in their faces and I am actually not!

Here are a few of my favorites of late... serious, thoughtful little faces, one caught mid-bite, all of them, I am sure (including Toby), are thinking, "Why is she behind that camera again?!" Someday they will be so glad I was. I hope.

Taken this week after over an hour of hard physical play with Pearl (Gracie's nurse) and me. 
Gracie propped herself on the ball with this expression that begged for me to grab the camera.

From January... Preston caught mid-bite during a backyard lunch.

Earlier this week... Gavin so serious (I had pulled out his binkie to take his picture) that his cheeks are weighing down the sides of his little mouth! 

Last month... Toby hoping that, if he is still enough, I won't realize that he is on the couch again.

Growing a Smile

They say that newborns smiling in their sleep is a natural, unconscious survival mechanism. The theory is that it endures their caretakers to them so that they are fed, held and loved. Interesting theory... I don't need a sleeping smile to help me with that, but, man, it sure is cute!

15 days old... The Sleeping Smile
Gavin's sweet "survival smile"  aka the "gas smile."

I wrote in Gavin's first month letter that I felt he was on the verge of a social smile.
On March 21st (4 weeks, 6 days old), while Gavin was happily hanging out with Preston and Gracie, I captured this...

Five days later, while I was leaving a voicemail (a serious voicemail, mind you), I squealed with joy mid-message as Gavin looked at me, bright-eyed and grinned. 
It was my first true, full-face, purposeful smile from him. 
When I told John that evening, he informed me that he'd gotten one that morning as well.

Then, today, it happened. The, "Grab the camera, he's going to put on a show" kind of smile. 
He went from looking at me like this...

To looking at me like this...

And this...

And, that, my friends, is how you grow a smile.
Stay tuned for a lifetime more of these!