Foto Friday 2, vol. 11 - Catch up (part 1 - Gracie)

Things have been crazy... crazier than normal! And, when the goin' gets nuts, the blog gets neglected! (Especially when some of the "nuts" included a somewhat crashed computer! Thanks to some tech support and my data backed up on a "Click Free," all is well. Don't have a "Click Free?" I highly recommend you go and get yourself one... or something like it!) Anyway, the Flock and their blog are back... and with so much to catch up on, I don't know where to start! (Thus, this is "part 1!")

The week before Gracie's birthday John started his 18 days of vacation. At the same time, Preston got sick again. This time, sicker than all the "icks" he's had this year combined. Our poor little dude was put on antibiotics, didn't want to budge from the couch for three straight days and then was not himself for another week after that. The morning of Gracie's birthday, I knew I was getting Preston's ick. Ugh. Thankfully, Gracie felt great for her birthday and for six days after. Sadly, because Preston and I were too sick to really celebrate, most of her birthday plans got scrapped that weekend. Our backup plan was to celebrate when Nana and Papa visited the following weekend. Unfortunately, I was sicker than the week before and, even more unfortunate, Gracie got sick the day Nana & Papa arrived in town and ended up missing three days of school due to yet another raging, bilateral ear infection. What the what?! I just finished 17 straight days of antibiotics and Gracie just finished ten! John's vacation didn't exactly turn out the way he (or I) planned! Oh, well. What can you do, right?! Dare I even type this next sentence...? But for annoying seasonal allergies, everyone seems to be healthy again. Hopefully that wasn't a jinx!

Now... for the FUN stuff!!!



Gracie's got wheels!
She loves (and I mean loves) her new ride! I love it, too, but to be quite frank, I am also terrified of it! This is a whole new ballgame and it comes with a giant learning curve. I am discombobulated because there is no place to hang her suction or set my purse or stash any of her other "stuff." So, while trying to manage her and keep her from rolling all over the place, I am still trying to get my own bearings! We got it on Thursday, so it's not like I've (we've) had time to adjust yet, but there truly is a lot to get used to.

For instance, every tiny incline or decline is an opportunity for her to go flying forward or backward. Every tiny bump in the sidewalk is an opportunity for her to get stuck. Then when she pushes really hard, she sends herself flying over it out of control. Where the grass and sidewalk meet is tricky because of the edge, etc, etc, etc. She and I spent an hour and fifteen minutes Thursday afternoon navigating the driveway and up & down the sidewalk. I let her lose control a bit to teach her how it feels and what to do. My guess is, this will be how we spend our weekend (and many more weekends).. Her IEP is next week and there will be discussion about Orientation and Mobility for sure! Regardless of the learning, work, fear, etc., it is awesome to see her have freedom!


(Because we have five different fabric types on her custom seating, our only color option was black. The frame manufacturer did not offer any colors we were willing to live with for several years, so we went with black. Besides "wheelchair boot camp," we will be working hard to customize and "girlie up" her new ride!)



New Glasses
Little miss has new glasses... and she's actually wearing them quite a bit! Well, at least for close activities like school work/table work, watching her DVD player, watching TV and "reading." She appears to be getting a benefit from this pair (as opposed to her old ones), because she's far too visually social to wear them just because they are cute!



School Party
It's certainly not hard to tell how much fun she had!

Gracie's class and the class next door making their own party hats

Opening her gifts - - a beautiful princess blanket made by her aid, Betty Lou; a super cute little Disney zipper bag; a darling Disney Princess t-shirt - - all of them perfect for our little princess! It's incredibly heartwarming to know how truly loved she is at school!


Yummmmmmmy! Lots of tastes... don't worry... she didn't actually "eat" the cupcake!



Mint Chip Ice Cream Cake
It's tradition. While pregnant with Gracie, I had Baskin Robbins Mint Chip Ice Cream often. Very often. The last two weeks of my pregnancy (I was thirteen days late when induced and she was born the next day!), I ate multiple bowls... daily. I couldn't stop myself! So, every year, we have ourselves a Mint Chip Ice Cream Cake.

Again... she is tasting frosting and ice cream, not actually "eating" it! Though she was sure making a valiant effort!
(Oh... and FYI... pulling deeply-set candles out of a very frozen ice cream cake is a very good OT exercise!)





Therapy Party
Gracie's Friday E-stim (VitalStim) therapist, Ally, gave her a belated therapy birthday party complete with a hat, party blowers, banner, birthday treats and presents! Gracie had so much fun and loves Ally a lot, as do I. She is so much more than a feeding therapist... she's an advocate, a cheerleader, a supporter, an out-of-the-box-problem-solver, a researcher and friend to both of us. I am amazed at the work she, and Gracie's other wonderful therapist, Hema, do each day. Amazed.
(More on this therapy and other medical updates coming in another post soon.)

Happy 7th Birthday, Gracie!

One day old




One year old




Two years old




Three years old




Four years old


Five years old



Six years old




Spring Picture 2010 - nearly seven!
a little fuzzy because it's scanned...

Dearest Sweet Gracie Girl,

It's really hard to believe that today is your seventh birthday. I know I say that every year, but it's true. Each year, it's also impossible for me to not reflect on the night you were born. I reflect, not to dwell on one of the most difficult nights of our lives, but also to celebrate the difference between those difficult moments and now. The road to this day has been long, full of seemingly insurmountable hills, curves and obstacles. Yet, at the same time, it feels as if the journey to this point has flown by - - as though we've been on an express train and reached this day in a mere blink. One thing is certain, regardless of the speed with which today came, you have shown us the most amazing scenery along the way. And that, my sweet girl, is another reason I reflect.

The night you were born, it was impossible for us to picture much more than an hour down the road, let alone seven years. Even in the very first moments of your life, one thing about your character was clear - - you were born a fighter. You fought like a warrior and instantly became the hero to your own parents.

Everything changed the moment you entered the world - - our priorities, our perspectives. The direction in which our lives had been traveling took an immediate, profound detour on April 16, 2003 and you have been our tour-guide ever since. We've learned from you each day... lessons on love, life, perseverance, priorities, possibilities and hope. We've learned what true courage is, what inherent will is and what pure joy really looks and feels like. You have, without a shadow of a doubt, taught us more in your seven years than we could try and teach you in seventy.

Through your lessons, we have a completely different outlook on what defines a "miracle." Because things have not come easily for you, even the smallest accomplishment is miraculous - - you are an extraordinary child. I know that all parents think that about their children, because it is a parent's job to believe that and think that. But you truly are. Because of what you've shown us and the roads we've traveled with you, we now see "ordinary events" as extraordinary; we see "typical milestones" as miracles. You've taught us to celebrate each day as its own miracle - - and there is nothing ordinary about that gift.

Four years ago (really... four years?!), when we were preparing for your first IEP, I wrote this about you to try and illustrate that, despite often feeling awful and appearing to not be engaged, you truly are a smart little cookie. I wanted those who were just meeting you to understand that they needed to be patient and that they were about to begin their own journey with our miraculous little girl.

"She is a thinker - - and an inspector. She will take any object and inspect it thoroughly. If she is shown something once or twice, she takes it in - - and as I said before, she may not get immediately involved, but she WILL get involved. It’s a matter of mastering how to give meaning to things from Gracie’s perspective, knowing how to motivate her - - and then having patience to let her process. If you do, you get to watch the human equivalent of a flower blooming."

In the last year, you've continued to show us blossom after beautiful, exquisite blossom. You've made leaps and bounds in 12 months... never ceasing to amaze us with what you can do, what you can tolerate and what you can withstand. You've easily adapted to school and absolutely love it - - you've learned so much more than I can try and list here. You have made friends in your school and in our neighborhood. You have started multiple new therapies and actually love them all. You work so hard... harder than anyone we know... to do things that come so easily to others. You thoroughly enjoy being out and about. In fact, when you are feeling well, the last thing you want to do is sit around at home! If the sun is still out, you think you should be, too! (This has made daylight savings challenging for Mommy!) There is nothing meek about you - - you are spunky, opinionated and strong-willed. You love deeply and unconditionally. You give the best, tightest hugs and the softest, fastest Eskimo kisses. You are silly and have the cutest, breathy chuckle through your trach. You are not shy at all and socialize with people in your own way... through moving close to people, touching their hands and faces and directing them to touch your face. You are our extraordinary, miraculous little girl... and we are so honored and privileged to travel this road with you as your parents.

Happy 7th Birthday, Gracelyn!
I love you with all my heart,

Mommy

Foto Friday 2, vol. 9 - Easter

We hope you had a really nice Easter!

We spent the day and evening with our friends (who are our neighbors) and their family. Such kindness and generosity was shown to our family and we are so grateful to have been included in their family's celebration.

The day was wonderful... a delicious dinner, great company, a super fun egg hunt and lots of talking, laughter, and chasing kids. Oh... and an earthquake! (Yep, we felt the 7.2 quake... and for a moment, everyone thought perhaps they'd had too much wine! It was the strangest sensation I've experienced in an earthquake. Thankfully, the kids didn't notice the ground rolling below them!)

There were several highlights to the day. Several. But, I believe the one that really stands out for me is when Gracie wanted up from her chair toward the end of dessert. She sat with John for a moment and then lunged toward me. She sat with me a moment and then made her way around the entire table by leaning toward the next person. When she got to the end, she made her way back, stopping a few times to go back and forth between certain people. She was socializing... communicating... being part of the action in the way she best knows how - - by touching their hands to her face and sitting close. I loved seeing her check everyone out. I loved seeing her "introduce" herself to those she didn't yet know and love on those whom she already knows well. And I loved watching everyone love on her.

And now, for the pics...

What's Easter without a little mommy-playing-photographer torture?!
The obligatory "photo shoot" before we left the house. Let's just say they weren't overjoyed about mommy having her camera out... yet again!


Easter Egg Hunt
John helped Gracie find a few eggs. Then she scooted out of the sun, tucked herself under the play structure and sucked on a hard-boiled egg! Check out the dye on her lips in the top left picture!
Preston was very focused! I think he gets his fierce egg-hunting skills from my brother as he was a little man on a mission...

... on a mission, that is, until Addison created a diversion by showing him the candy inside the plastic eggs! Such a smart girl!

Taking a break from the hunt to enjoy a treat!

This Year's "Ears"
It was fun watching Gracie snag eggs from Addison. Addie would empty the candy and Gracie would snatch the egg... so cute to watch them interact!


Going for a drive


Running hand-in-hand.
They ran several laps and played for hours in the backyard.
(Thankfully burning off all that sugar!)

Back at home... Easter surprises from Mommy & Daddy, Nana & Papa and our kind friends, Danny, Jackie and Dave
Miss Gracie was ready to strip! She had spent the whole afternoon and evening in her clothes (great job, girlie!) and was not going to enjoy the fun at home without stripping off her shirt at the very least!

"Ears" Gone By...

Super corny post title... I know! I just couldn't help myself!

Here are some of our favorite Easter pictures from the last several years.
We are making new memories with dear friends today and we are wishing all of you a very Happy Easter!

2000
Sophie was such a good sport!


2003
In the NICU - - Gracie was 4 days old


2004






2005


2006
Also Gracie's 3rd Birthday




2007


2008




2009

Foto Friday 2, vol. 8 - a visit

John's sister, Kristen, and her family were in town this week. It was so nice to see them. Now that they're gone, Preston wants to know what time his cousins are coming over. Sorry, Buddy... they had to go home!

Kristen (aka, Auntie NuNu) and Gracie.
Remarkably, she kept her clothes on long enough for this picture!

Preston and Tyler playing at the beach

Austin and Tyler helping Preston dunk!

Austin showing Gracie his video game.

Austin climbing the avocado tree.

Uncle David, Auntie Kristen, Gracie and Grandpa John.
(Gracie was less than thrilled to still be dressed, but humored us for a couple of pictures!)

Uncle David to the rescue!
He learned how to sign "shoes off" and "socks off" and then helped Gracie take them off. This, of course, made her very happy!

Auntie pitching some balls to Preston

Preston, who loved playing with the big boys, also loved having an audience for his stories of monsters and dragons.

(Somehow, John managed to stay out of all pics taken with our camera! Grrr...!)