Thursday, June 2, 2011

Celebrate Eight! (Back-Blogging, Part 2)

Due to circumstances beyond our control (like illness, work schedules, etc.), our unintended theme for the kids' birthdays this year is "postponed celebrations!" 

On Gracie's actual birthday, she, Preston and I were all sick - - Preston was not nearly as bad as Gracie and I - - we both had pneumonia. Anyway, John was out of town and we had no intention of celebrating until we were all better and daddy was back. But, knowing it was his sister's birthday, Preston insisted that she needed a cake, candles and a wish. I loved that he wanted to do that for her, and even though she couldn't have cared less and I felt terrible, it was so important that he be able to help make her cake and celebrate a bit.

While the birthday girl slept, Preston was my little helper (egg cracker, spatula-licker) in the kitchen. 
That night, she was a good sport and sat up long enough to watch him make a wish and
blow out the candles on her behalf.  I think she knew it mattered to him!
Besides something for himself (no surprise!), he wished that she felt better (no surprise there, either!).

A couple of weeks after the actual day, and while Nana was visiting,
we finally celebrated Gracie's 8th Birthday. 
She had a great time opening her cards and presents as well as playing with her new treasures.

Just as he had two weeks before, Preston helped Gracie make a wish and blow out her candles.
Since she was feeling better, he instinctively gave her his hands to play with
so she wouldn't grab the lit candles.
And, this time, we had to gently remind him that this was her wish! 

Wednesday, June 1, 2011

Best Surprise EVER!!! (Back-Blogging, Part 1)

Well, between my laptop constantly shutting down every five minutes and some seriously sick people in the Swann house for the last seven weeks (at least two of us have been sick since the first week in April... well, three, including the laptop), this blog is in (yet another) sad state of neglect.  I am way behind and will be making a concentrated effort to catch-up and stay current over the next few weeks.  We'll see how that goes... and if my laptop cooperates!

The Saturday before Easter, my mom (Nana) was scheduled to arrive for a six-day visit.  She'd been in Northern California working the previous week and we were lucky that she was able to work remotely from our house and visit with us.  Knowing way in advance that she was coming, my brilliant sister-in-law (Vanessa) concocted a plan to have my brother's family (Brian) drive from Arizona and come surprise Nana.  My mom hadn't seen them in about 18 months and so hadn't yet met Makenzie, their eight month old daughter. 

But, in true Swann fashion, a brilliantly planned surprise (for which we were all SO excited) could not go off without an element of drama.  Saturday morning, Preston woke-up at 4am, crawled into bed with John and me.  At 6am, he sat up, said "Mommy," then threw up all over our bed and proceeded to get sick every twenty minutes for a couple of hours.
  
This is what our sad little man looked like for a while...

Then it just stopped and he was fine.  He hadn't eaten dinner the night before (because he fell asleep at 6pm while it was being made), so we didn't think he was sick from something he ate.   But, because of this, Brian and Vanessa were understandably hesitant to come hang out - - and they'd already driven the eight hours (with two kids and three dogs) the day before.  In the meantime, my mom called to say that her flight was delayed (over three hours in the end).  Brian and Vanessa actually contemplated not staying in town and just heading back to Arizona because we weren't even certain how long it would be before my mom could get on a plane. And really, I couldn't blame them... a 2 year-old and an 8 month old... who'd want them to be exposed to the flu?!   I was a wreck and in tears thinking that we were so close to pulling off such a great surprise only to have failed.  I couldn't believe that Vanessa had put together this great plan and it wasn't going to happen.  We made all kinds of alternate arrangements, jumped through some additional hoops and then, since Preston was tolerating fluids and crackers, decided in the end that it wasn't the flu, and the surprise was back on...but not without me aging a bit in the process!

After a few hours, Preston was back to normal and the boys were playing.
Aren't they so stinkin' cute together?!
Gracie and I picked Nana up from the airport.  John, who was off work with a bad back (he looked like an "S" which just added to our drama... he is still sore), was home with Preston (who couldn't have possibly kept the secret as excited as he was!).  When we walked in the door, Preston called for Nana from Gracie's room... and when Nana walked in, only Makenzie was sitting on the floor.
 




Nana was stunned, then cried... and then Makenzie cried, too!
As Nana walked in, she was confused for a split second, even turning to me to ask, "Who is this?" and then realizing, before the whole question came out of her mouth, that it was her granddaughter!  It was, by far, the best surprise EVER!!!


My beautiful mama, my beautiful sister-in-law and my beautiful niece

Nana and Jack having great fun bonding at the water table.
They were both cracking up as Jack soaked her!

After a change into some dry clothes for Jack, their fun continued!

More Saturday afternoon fun... bubble blowing, egg dying and cars!

Gracie, our shirtless wonder, enjoyed the weekend, too! 
She loved having everyone around and, despite not feeling 100%,
had a blast playing with the Rapunzel doll she received in her Easter basket!
It has provided her with hours and hours of enjoyment!


I just love these two pictures... for very different reasons!

It rained all Easter morning... but that didn't stop the boys from rolling up their pants and getting their feet wet to find a few eggs.  The big ones had hot wheels in them... which they both loved!

So cute... even when she's crying!

Nana and her four grandchildren - - in the same place, at the same time - - for the very first time!
Best surprise EVER!!!


Saturday, April 16, 2011

Happy 8th Birthday, Gracie

Your name card that was taped to your incubator in the NICU.
I think it's fitting that we chose the one that read, "... pixie dust sprinkled here..."


My dear, sweet Gracelyn Marie ~

Today you turned eight.  Although time passes too quickly and I often wish there was a pause button to press so your birthdays won't come as fast, I am also relieved to bid farewell to your seventh year.  It was, in so many ways, the hardest year of your life - - so many medical complications that lead to setbacks in numerous other areas.  Sadly, you were much too sick today to even care when each of us wished you a happy birthday.  We spent what should have been a fun, celebratory day, doing breathing treatments every four hours (along with a couple for Preston and me, too), Vest treatments every six hours, giving you intermittent blow-by oxygen (for support, so you wouldn't have to work quite as hard), and doling out medicine, etc.   (Daddy has been spared thus far and actually left town this morning for a work event, so our official celebration was to be postponed anyway.)

In some ways, today was not unlike your first day of life - - you are really sick and fighting hard.  However, on your actual birth day, you were whisked away to the NICU at a different hospital and, due to my c-section, I didn't see you for another day and a half.   Today, I got to spend the day cuddling and holding you in between all the madness of our makeshift hospital. And, in the moments that you felt some relief, I was right there when you smiled, played with my hair, held my hand and signed, "I love you."   You never, ever cease to amaze me with your strength, resilience and happy, loving spirit. 

Your brother knows we are celebrating when daddy is home and you're feeling better, but he still insisted on giving you all of his favorite toys, including his treasured dinosaurs which he "wrapped" yesterday.  You smiled at him and even chuckled once as he slid another truck over to you, to which he delighted, "Look, mommy, Gracie feels better for her birthday!"  I wish that were entirely true, but you did seem to be showing a bit more sparkle at the end of the day... enough that I took you guys out back and set up some shaving cream at the table.  While you never cracked a smile and rested your head on the side of your chair, you did play intently for about twenty minutes.  After that, you sat on my lap and quietly watched Preston play.  And, even though he knows you can't actually eat cake, he was adamant that "the birthday girl needs a cake... it's her birthday toooooo-day, Mommy," so we baked you a vanilla and chocolate chip cake in the shape of a flower. 

While we are postponing our official celebration of your birthday, and though (for the most part) you've been "missing" since last Sunday night, it's not hard for me to celebrate all the wonderful things that make you you.   The list is long.  Here are some of my favorites, in no particular order...

- You love to cuddle, kiss and hug.  For the longest time daddy and I wondered if you would like to snuggle... you used to be so uncomfortable cuddling for too long... you'd get sweaty, gaggy and fall asleep.  Now, you can't get enough and have a definite expectation to cuddle with daddy from the time I start the dinner dishes until you go to bed.  You often ask for kisses by signing "kiss"... and you get an endless supply.   You also pucker your lips to ask for them (which I love because only the left side of your bottom lip sticks out) and I have to stop myself from kissing the cutest-lips-ever right off your face!  When you hug, you don't mess around - - a tight squeeze accompanied by a gentle back pat or rub.  It is the sweetest, most heart-warming thing.  I am grateful every single day that you are an affectionate child.

- You love your brother.  So much.  It warms my heart to see your face light up when you see him and I love when you sign his name when he isn't home, asking, "Where's Preston?"   You've been mesmerized by him since the first moment you saw him and you continue to be as gentle with him today as you were when he was a baby... even when he "wrestles" with you.  We have to assist you to "tackle" him back, but you definitely aren't shy about telling him "no" or pushing his hand away - - which I love.  For the most part, he easily makes you laugh and smile... more so than any other person in the world, with the exception of your daddy.

- You are silly... and it's genetic.  While I can be silly and playful, Daddy just is!  You and Preston get that from him and I am so glad. 

- You are quite the social butterfly.  Up until just a few years ago, going new places (unless they were outside) and meeting new people was awfully terrifying for you, so much so that you'd get worked up enough to make yourself sick for days.  Now, wherever we go, you make sure that you're a part of the action.  Whether in your chair, scooting on the floor, or travelling lap to lap (and requesting a new lap by lunging to the next person) you make your presence be known and "say hello" to everyone.  Your expressive language may be limited, but that doesn't stop you, in any way, from communicating with the people around you. Instead of conversation, you use touch and your keen instincts about people... you might be polite and interact with everyone, but you know who's genuine and prefer those individuals.  I really like that about you.  Good instincts are important.

- You are strong-willed.  This is something I adore about you... it means you're thinking and that you have an opinion... it is also something that frustrates me to no end!  Whether it's something you want or don't want, you make your needs be known and you will not give in easily.  Sometimes you'll relent... but only if I explain things in a first, second, third scenario.  That is, as long as what you want (or don't want) is in the line-up, you will (might) back down. 

- You delight in the simple things.  Watching the breeze tousle the leaves in trees and inspecting the fine details of every petal on a flower can occupy you longer than any toy.  You love dirt, water and anything hands-on like play-doh, finger paint, shaving cream, slime.  It's funny, too, because you used to dislike any tactile activities like that.  Now they're your absolute favorite.  You seem to love playing with everything that's scary to have near your trach!

- You are happy... and quite frankly, that amazes me.  Your days aren't easy... even your best include some sort of discomfort or pain and yet, you manage to dole out endless smiles and "I love you's" - - which also proves how incredibly resilient you are.  You defy odds every day and your spirit defines strength, bravery and resilience.  I'm constantly in awe of and inspired by these qualities you bear and wonder how someone so small and so young could be made up of such tough stuff.
Must have been all that pixie dust... amongst other powerful things. 

I love all these things - - and countless more - - about you, Gracie Girl.
Happy 8th Birthday... I hope this is your best year yet.

All my heart,
Mommy

Saturday, April 9, 2011

Faces

I take lots of pictures in an effort to get one cute photo of my kids together. 
Lately it's been a difficult task due to several factors, not the least of which being that Gracie is often not clothed (indoors) and Preston is often moving at the speed of light.  So, today, as we headed around the corner with friends to enjoy our first carnival of the season (our community has several this time of year), I quickly clicked away at my two favorite faces. 
This is what I got...

LOVE this...

LOVE this, too!

And I LOVE all of these! 
I love that Preston is holding Gracie's hand.
I love that he tickled her to get her to smile.
I love that she pushed his hand away and laughed at him.
I LOVE how much they adore each other.
(I also LOVE that, once again, Gracie kept those sunglasses on for a really long time!)
At the carnival, Addie (another one of my favorite faces!), Preston and Gracie all got their faces painted for the very first time.  They waited (more patiently than the adults!) in a long line and sat super still while their masterpieces were being completed!

Gracie got a pretty heart, Addie got the "princess" artwork and Preston chose the snake.
(Note: It's April 9th and we're wearing sweatshirts in Southern California!  We even had hail yesterday!  Brrr...)
So excited about their finished products!

Monday, April 4, 2011

Bubblefest

Little pleases and impresses Gracie more than bubbles. Most kids like them, including Preston, but "like" is an understatement for Miss Gracie. So, when our friends mentioned that Bubblefest was starting at the Discovery Science Center last weekend, I knew that getting my kids there was a priority. Thankfully, little miss lovesick was able to drag herself out of bed on Sunday to enjoy a fun-filled afternoon.


I'm so thankful that my "on-it's-last-leg" camera managed to get this shot.
During the finale of the show, she signed, "happy" "more" and "bubbles" completely unprompted.

What we saw onstage...

...What the kids looked like watching

The kids in Elmo's World
Preston and Addie were excited to see Elmo, which was surprising since Preston is so unimpressed with Elmo at home!  Gracie, who still really enjoys Elmo, was completely unimpressed with him in person!  Her expression cracks me up... I think she is looking at him and wondering two things: 1) What the heck are you doing here? and 2) Why are you so big?
In the "super whippy wind tunnel" as Preston described later to John.
Gracie wheeled herself into a wind-tunnel, signed "wind" and started to roll back... She grabbed onto her wheels and cracked up.  For a kiddo who can't blink to protect her eyes, she sure does enjoy the wind!
It was such a fun day (but for the ridiculous crowd!) and there were so many interactive things that were set up for Gracie to enjoy, too.  I look forward to taking full advantage of our new membership and intend to take my girl back to the bubble show at least one more time while it's here.

Sunday, April 3, 2011

Pimp My Ride


Phase One of Pimping Gracie's Ride - - her newly embroidered canopy!
Miss Thing thought she was all that and a bag of chips cruising the mall Friday!
 Because Gracie's chair is "uber custom" and has parts from various manufacturers, we were limited on our choices of colors to make it cute and girlie.  The options for her frame were either too dingy or way too neon for our liking (especially knowing we'd have to live with it for many years to come) and there are so many types of fabrics involved in her seating and canopy that coordinating colors was impossible.

Thankfully, Gracie's awesome PT, Laural, had a plan (and a kind heart, selfless spirit and a mother-in-law with an embroidery machine!) to help spruce up the canopy.   We picked up the panels at therapy last Wednesday and every single place we've been since then, I've had people come up to me and say the sweetest things about her customized canopy.  Gracie thinks it's pretty snazzy, too... she keeps pulling on the front flap and trying to look at it!  Stay tuned for Phase Two!

Saturday, April 2, 2011

Lovesick

Friday was the first day of Gracie's spring break (technically a furlough day) and, aside from appointments, I kept my girl busy with a bit of shopping at the mall.  For about two hours, she wheeled herself all over, taking only a few breaks from being in control of where she went.  She loved looking around Old Navy - - I think the bright clothes, freezing cold air conditioning and rocking music that she could feel vibrating in her wheels made her happy.  She did try escaping from me a few times, which only made me smile (since we weren't crunched for time!), as I do love her strong will and desire for independence.

I must have worn her out something fierce, because she spent the better part of today just hanging out in bed with her feet propped up on the wall, no urgency to get up and be busy.  She was happy, just lazy.  Then she took a nearly three hour nap and I half expected that she'd wake up not feeling well. 
Perhaps she's fighting another bug... OR... Perrrrhaaaaaaps...
She's pining for her "sweetheart" whom she won't see again until the 11th!

My little girl is most definitely crushin' on this young man!
Just look at that expression in her eyes! 
The adorable young man in question is a first grader in Gracie's class (way to go my little cougar!) named Christopher.  (Sorry Christopher Clayton... apparently in Gracie's case, absence makes the heart wander! LOL! She will always love you, don't you worry!)
He is an absolute doll - - a sweetie pie who loves taking care of Gracie and helping her whenever and however he can.  I've seen them together on a few occasions this year... one of the cutest was when he held Gracie's hand on stage during their Christmas performance.  From the googlie eyes she's making (can you blame her..? look at how cute he is!) and the precious stories Gracie's teacher and aide tell me about their interactions together, things have clearly gotten more serious!


Let's hope that this young man comes back from break having missed my girl as much as I suspect she's already missing him!  About half the time I show her his picture, she signs his name along with "sweetheart."  Granted, she doesn't understand what that means, but she definitely understands that cute little sign is reserved just for him!  The next eight days could be very long for my lovesick girl!

(For those of you who are wondering... yes, her sweetheart also has CHARGE Syndrome.  Including the happy little couple, there are a total of six kids with CHARGE in the program.)

Friday, April 1, 2011

Atta Boy!

Our little man loves himself some sports!  Playing... watching... even on the Wii... he takes what he can get! Thanks to used sporting goods stores, we have been able to stock our garage full of all kinds of gear so that he can play whatever his heart desires at any given moment.   And, if you ask him what he's going to play when he gets bigger, he'll say, "In college, I'm going to play..." and then proceeds to list pretty much every single sport you can think of... too funny. 

In February, John and I took him bowling for the first time. We used the bumpers, of course, but he actually bowled and only used the little ramp they provide a couple of times. He used a seven pound ball and played two full games... and legitimately beat me in both!


In mid-March, the boys were out and I got a picture text from John, it was of Preston... putter in hand... and a message that read, "DUDE... he got a hole in one!" A bit later, I received a second message indicating he'd gotten another! It was his first time playing! They went twice that week, golfing both 18-hole courses, and went again this week! It's time for the real driving range now!


I'm fairly certain that a set of clubs (used, of course) are in this kiddo's future!
 
On March 1st, John took Preston's training wheels off... and this is how he did!





(They're back on now... but that's because I want them on! I'm too nervous trying to keep him safe while also keeping Gracie safe in her chair! It's just a matter of time, though, as he wants to practice with Daddy every chance he gets!)

Friday, March 18, 2011

Nose prints on our backdoor

Today I cleaned your nose prints off the backdoor... for the last time.  I've been avoiding it.  I knew I would cry, but I had no idea how hard.   For years, when I'd cry and no one else was home, you'd come find me, we'd curl up and you would let me cry on you until your silky soft ears were soaked with my tears.   Today, crying for you instead of next to you, only added to the difficulty of cleaning the backdoor and was a painful reminder of the last teardrops I shed on your ears just three weeks ago.
We said goodbye to you in the dark, early morning hours of February 24th and I have been putting off (what once was a several-times weekly task) every single day since then.  We all miss you terribly, Sophie, and there really aren't words to describe the profound void  that now exists.  We knew our days with you were passing quickly, but, no matter how much we prepared ourselves, there was no preparing.

Preston talks about you, without our prompting, every single day, telling us how much he misses playing with you, how pretty you are and how sad he is that he doesn't see you.  The other night, he "wrote" you a note and asked us to send it to you in Heaven.  He has also drawn pictures for you that we need to "keep in a safe place until you come back from Heaven."  Last night at dinner, he toasted to you and said, "For Sophie in Heaven.  I miss my dog.  Cheers." 

Gracie misses you so much, too, which goes without saying. After all, the two of you shared a bond that was undeniably special and daddy and I were privileged to witness moments between you that were absolutely breathtaking.  
Although you spent every night "making rounds" to each room where we were all sleeping, you spent your last few mostly in Gracie's room.  On that last night, you slept on the floor at the foot of her bed... never leaving her room.  Thankfully, she and Preston were asleep when you woke me up and they remained asleep when Daddy carried you to my car.  However, you most certainly came and said your own special goodbye to Gracie later that morning when she went looking for you before school.  It was a sacred moment that left both daddy and I in tears and one which we won't ever forget.  Thank you for that priceless gift and countless others.

Every part of our daily routine included you... chores, playtime, leaving, coming home... everything.  I still feel your body up against the back of my legs and turn to look for you.  I still hear your chain shake when you get up at night needing to be let out.  I still hear you at the back door, giving one quick little bark to remind someone that you're done and want to come back inside.  I still step over and around where you'd lie in our bedroom, my instincts and habits do not coincide with the reality that you're not there.  I still look for you to greet us at the gate when we drive up.  I still wait for you to come lay at my feet when I sit at the computer.  Missing you and seeing the kids miss you is so painful, but it is also a testament to the love and bond that we shared with you for twelve years and ten days... and thinking of that is joyful.

It was 1999, we had just bought our first home and I wasn't moving in until after we got married.  Our wedding was four months away and, after saving for almost two years, we were taking a much anticipated, extended honeymoon to Europe.  Suffice it to say that getting a pet and then leaving that pet for six weeks wasn't on our radar.

But, all that changed while my mom and I were running some wedding errands in downtown Walnut Creek.  The Contra Costa Humane Society had opened an adoption center in a store that had just gone out of business.  There were cats in the front windows... they were so cute... so I wanted to walk inside, much to my mom's chagrin... we were, after all, trying to get things done.  We went separate directions as we walked in and I was making friends with a cat when she came up behind me and told me to come in the back.  "You have got to see this dog." 

I followed my mom into the back and there you sat.  You were clearly uncomfortable in your surroundings, but no amount of discomfort could hide the most soulful, beautiful, perfectly lined eyes.  You had the sweetest face... you were quiet, gentle, regal looking - - even with a red bandanna around your neck. (I'm quite certain that no other dog could sport a bandanna and still manage to look regal!)  It was obvious that you had easily bonded with Beth, the woman at the Humane Society who had been taking care of you, and her presence put you at ease as more and more people started walking in, several of whom were interested in taking you home.  Thankfully, my mom and I had also bonded a bit with Beth and she put us at the top of the list for potential adoptive homes for you (I hadn't even called Daddy yet!).  I explained that we were getting married soon and that we would be leaving for a long honeymoon... wondering if that would be an immediate deterrent from them letting us adopt you.  I knew that my family would take care of you in our absence, but wondered how our absence in just a few months would affect you.  She wasn't too concerned. 

She told us what they knew about you... which wasn't much.  You were about a year and a half or two... though you looked much younger (you looked young even as a senior dog... wish we all could age as gracefully as you did!).   You were a German Shepherd mix... they assumed a Greyhound breed (later agreed on by vets as a German Shepherd and Sloughie mix).  You had already been spayed (which was so sad to us, as you would have made a wonderful doggie mommy and had the cutest puppies ever!).  They had given you the name "Simone" which was problematic, as it didn't suit you in the least.  You were found wandering around town by animal control, underweight, with no collar.  You were taken to the pound and put on a 24-hour list - - that meant that if you weren't adopted/rescued within 24 hours, you would have been put to sleep.  The pound was overcrowded and thought you were too anti-social... what they didn't realize was that you were simply terrified and likely, depressed.  Oh, and, of course, the Shepherd in you was certainly not warm and fuzzy with strangers who hadn't earned your trust... neither was the Sloughie part of you, for that matter.  Thankfully, a Humane Society volunteer went to that pound on that day and rescued you.  I'm so grateful... because (regardless of who adopted you) you deserved a chance at life... and I was in love.  So was my mom... it was impossible not to be.  I stepped outside to call Daddy and he was perplexed about my sudden interest in a pet... after all, this didn't make much sense.  But, I knew that he just needed to meet you...

I brought him back that same night.  You were really nervous to meet him (because they gave us privacy and moved us into a small, empty room and you were terrified), but won him over nevertheless.  We spent our evening at dinner discussing you and how you'd fit into our lives and, by dessert, we knew we were going to adopt you for sure.  The next day was Valentine's day - - and became known as your "Re-Birthday."  We bought you a bed, collar, leash, food, a few toys and headed out to get you.  You were quiet on the drive home, looking out the rear window of the car, presumably for Beth, but you really adjusted quickly when you were introduced to your new digs!  Though we toyed with a name symbolic to Valentine's Day, it was quickly decided that we'd call you Sophie and you easily adjusted  to that, too... along with the numerous nicknames you accumulated over the next 12 years and 10 days.  The most used name was "Moomer" which came about because, as we discovered in the first few days that you joined our family, you made a soft "mooing" sound when content.  It was the cutest sound... similar to a cat purring... and we loved hearing it.

Looking regal in 2008 while sunbathing in one of your favorite spots in our Roseville backyard
You were such a good girl... most of the time.  You had a few moments of mischief early on... you ate my brother's tuxedo shoes the night before our wedding.  (No one told me until a couple of days after the wedding!)  You destroyed a few pillows in the first few months.  In the first few weeks, we thought you were going to jump through the front window anytime someone walked through our front gate.  You tried jumping the fence in our backyard... not in an effort to escape, but rather to get the squirrels who quickly learned taunting you was not the smartest idea.  You were fast.  You would dig a bit here and there, but we broke you of that pretty easily.  You did, however, insist on burying every rawhide bone that you could sneak by us and get outside.  We quickly learned that rawhide was not the best treat for you! 

We constantly wondered what your story was... whomever had you before had clearly taken time to housebreak you.  You also knew how to sit, shake and stay (most of the time).  You were smart as a whip and with just a bit of effort and time, Daddy (I helped, too!) added speaking, howling, smiling, rolling over and dancing to your repertoire.  You understood so many words that we actually had to spell "walk" "park" "car" "bath" and several others because you'd go absolutely nuts if you thought any of those things were happening and we weren't moving fast enough! 

In our first house, the local pet store was within walking distance and they had a dog wash facility that you loved.  We used to walk you there all the time for baths and when you were done, we'd buy you a pig's ear and you'd carry it in your mouth all the way home... you'd even sit patiently with it in your mouth at the crosswalks.   And you LOVED to go on walks... long ones, two of them almost every day.  One of my favorite days ever was walking for hours in the rain with you and Daddy.  If I remember correctly, we walked over seven miles that day... just aimlessly wandering through neighborhoods in the drizzle that turned to rain.  Until we left the Bay Area, your most favorite place to go was Point Isabel's Dog Park.  You'd literally start this crazy, excited whining in the car the minute that we could see the exit on the freeway.  We felt so guilty when we moved away and there wasn't anything off-leash even remotely comparable to "your Disneyland."

Such a cuddle bug... you never did get the memo about not actually being a lap dog! 
Just looking at this, I can hear you "mooing."

You loved it when we ordered Chinese food... it meant white rice and fortune cookies for you!
You loved the beach, snow, camping (you slept right between us in our tent!)... anything that meant you were coming with us.
You used to love chasing daddy... he'd take off running, I'd make you wait, let you off the leash and you'd go off like a rocket, full-speed, catch and pass him.  Other times, you'd gently nip at his shorts as you'd pass him by... sort of like you were trying to pants him.  I loved this because it made him giggle like a kid.
You also loved chasing squirrels.  When we moved from Pleasant Hill to Roseville, we didn't have any squirrels, so daddy started calling the cats in the neighborhood squirrels.  You lunged at every cat you saw after that.  Funny... sort of.  When we moved to this house, you got your squirrels back and that made us both happy.
You had a love-hate relationship with the flies that would come in the house.  You hated it when they bugged you, but you loved it when daddy would say, "Get the bug, Sophie!  Get the bug!"  You'd hop around until you'd snap it up, that is, if daddy (aka... Mr. Miyagi) hadn't already snagged it ninja-style.  This was a game that the two of you would play while I would be rolling my eyes at you both, laughing and, of course, making sure lamps and such weren't flying around the room. 
You, I'm quite certain, dreaded Easter because I made you wear ears every year... but you did it because you knew it was our tradition and it made me happy.
You loved staring at fires in the fireplace, especially at Nana's.  You also loved napping in front of the fire.  Smart girl.
You could hear a can of whipped cream opening from across the house.  It was truly like a party trick.  Daddy would say, "Watch this..." and open the whipped cream and just barely start to hit the nozzle... you'd come running, even if you were sound asleep.  Hilarious.  And, again, smart girl.

You had battles with your health... tumors... multiple... that led to multiple surgeries over a year and a half period.  You even were followed by a nuclear medicine veterinarian for about a year.  During that time, you also decided to get into the trash and eat an entire bag of frozen chicken wings - - bones and all.  Despite multiple ultrasounds expecting devastating intestinal damage, you were fine.  Oddly enough, your health issues resolved right about the time that Gracie came home from the NICU.    It seemed silly after the fact, but when I was pregnant with her, we were worried about how you'd react, whether you'd be jealous, etc.  You had so much love to give and, truth be told, you seemed to know when I was pregnant before we did... both times... so our worries were unfounded.  
Hanging out just a few days before my
due date with Gracie
You were so protective of me and would often lay with your head on my belly, especially when I was pregnant with Gracie (since I had more time to just lie around then!).   To help introduce you to Gracie's scent, we brought home swaddling blankets from the NICU and put them next to your bed.  You knew things were changing... we weren't home a lot for a while... and when we were, we were often sad.  You were such a rock for us... loyal, lending your body as a pillow and catching our tears.  When Gracie finally came home, you were so gentle and patient... and that never, ever changed with regard to her.   Though she would reach out to quickly touch you, she didn't voluntarily start petting you (due to sensory issues) until she was about four.   But, she didn't need to pet you to bond - - she would stare at you and lay next to you for hours.  You'd let her do just about anything... things you wouldn't have ever let Preston (or anyone else) get away with... including pulling the fine fur between your paw pads!  You sensed so much about her and she about you.   You played well with Preston, and considering how old you were, you put up with a lot from him.  One thing was certain about you and your relationship with the kids... they were "your kids" and you protected them fiercely.  And even though we never considered you to be "in the background" of our lives, you are in the background of so many of the pictures... observing, lovingly standing guard and making sure "all is well."


I miss you so much, Moomer.  I miss your company, the comfort your presence offered, the unconditional love you gave so freely.  You truly were the best, smartest, most loyal, loving, fun dog ever... and without you and your ears to cry on, I'm not sure how daddy and I would have gotten through some of the darkest days of our lives.  I still look for you in your favorite spot outside, in the dirt behind the avocado tree and when I don't find you there, my eyes habitually dart to the backdoor where you'd often wait... nose gently touching the glass.  Then I remember... you're busy running in circles with Chancy, chasing squirrels... and making nose prints in Heaven. 

Sunday, February 6, 2011

Appointments Galore

Gracie's last abdominal migraine cycle ended, in it's entirety, January 23rd. My absence here since that horrible week, I'm happy to report, is due to a lot of busy days... school, medical appointments, fun, therapy appointments, visitors, more appointments, and so on. Being that the cycles last between 4-6 days and occur approximately every 16-21 days, we capitalize on the good days and accomplish as much as we can, not just for Gracie, but for all of us. The space between is exhausting for wonderful, "normal" reasons, and though I am downright spent at the end of a day, you won't hear me complaining about being that kind of tired.

It's no secret that Gracie has a level of fight and resilience beyond words, but after that last cycle, her return to hard work at school and therapy (OT and PT twice a week each, plus mommy therapy) reached a new level in my opinion. She went from being in terrible pain, having dusky pallor, being listless, retching, sweating and unable tolerate pedialyte (let alone formula) to having two great weeks in a row at school. Last Monday was a marathon day with school (where she had a great day), a cardiology appointment (more on that in a moment) and then an hour of therapy where she rocked it by working on stairs with her PT and sit-to-stand while painting (thus, reaching and using one hand to balance on the wall) with her OT. She was tired, but she rallied through. She had been up since 4:15am, left the house at 8am and didn't get home until almost 6pm. ROCKSTAR. Her PT even commented on how amazingly well she continues to bounce back without skipping a beat. That's my girl!

The Medical Appointments:

GI
During her last migraine cycle, we saw her GI doc. My mission with him was to show him what she's going through, how she looks, why it's impossible to get nutrition in her during this time, etc., and to show him my records of her calorie intake since her last multiple-day hospitalization in October. Because of the frequency of the cycles, Gracie's missing a lot of nutrition. The good news is that I can bump up her intake in the space between and give her more (because when she's well, she now tolerates her feedings beautifully!). But even with that, I'm limited on volume for cardiac reasons and still can't catch her up enough - - averaging out a month, she's short roughly 300 calories per day. Thankfully, this doc (unlike another in the same practice) completely agrees with the way we handle her feedings during a migraine. He, too, is concerned with how hard she can retch and the risk of her slipping the repairs that were surgically made last summer. He urged me to try a calorie booster that was unsuccessful in the past (she vomited and retched for hours) to see if she'd do better now. I was skeptical, but said I'd try it over a weekend so that she'd not miss school if it made her miserable. Guess what?! It worked! We've been giving it to her for a week without issue... Woo Hoo!
We will see him in another month to check Gracie's weight and height. The goal is to get some weight on her... she's had a bit of linear growth since the fall, but still only weighs 29.5 pounds.

Neurology
I brought my records of Gracie's cycles (for the last year... I have records since she was just a few months old), a list of the symptoms, video and pictures. For the umpteenth time I expressed my belief that this appears to have a cranial nerve and sinus related component. (She does a lot of pulling on her face - especially her mouth, her color changes drastically, she covers her eyes and/or presses them, she has a increased secretions - - saliva, not mucous - - through the whole thing, etc.) He didn't really want to look at any of it... not in an unsympathetic way... just that there isn't much he can do other than mess with her meds. He'd like to get an MRI of her brain and take a close look at the nerves, etc. but Gracie has a pacemaker and it's simply out of the question. She had one as a baby, but her nerves were so small then. A CT of her brain won't show us anything in enough detail (with regard to nerves - - she's had three brain CTs in her life and we already know her brain structure is not normal), so, once again, he made some medication adjustments. (We are looking into pursuing another go at alternative medicine, though.) We will call him in two months to let him know if the pattern has changed at all. This is so very frustrating, not to mention heartbreaking... as this central nervous system/neurological piece of Gracie's medical drama has the most impact on her... it affects her nutrition (which, thankfully, is the best it's been since 2007), but more than anything, it affects her quality of life... every 16-21 days.

Opthamology
Gracie has a cataract in her right eye... which is, thankfully, her non-sighted eye. We will follow-up with the doctor in April to determine when to do a lensectomy, though she did say she'd like to wait as long as possible. The biggest concern with Gracie's right eye is that it is so small - - the orbital is smaller than normal, but the eye is even smaller than that - - and therefore, more prone to irritation and infection. The opthamologist stressed how fragile that eye is and mentioned that there is a possibility that, at some point, her right eye may have to be removed if it doesn't remain healthy. Our first opthamologist had mentioned this to us years ago, so I was not shocked by the statement. And, even though it is a "possibility down the road," I'd be lying if I said I didn't feel my stomach drop just a bit at the thought. In the wise words of my mama, I will "not borrow trouble." There are plenty of "for sure things" on my plate (and Gracie's) right now.

Orthopaedist
Gracie's scoliosis is slightly worsened (not too surprising given how sick and inactive she was for many months last year). The rotation in her pelvis has also increased and has caused her to sit even more crooked. The bracing "contraption" that the doctor ordered for her hips last year is not a safe option as it forces Gracie to lay flat on her back - - not good for a kiddo with a trach who needs to often roll to her side to clear her airway (not to mention how incredibly uncomfortable it is). She has had other braces for her scoliosis in the past, but they restrict her mobility so much that everyone (including the ordering docs) feel that it's better to give her the option to move and gain strength as those activities will also help with slowing the deterioration of the curve. We go back in April.

ENT
Fluid in her ears... as always. That's why she can't wear BTEs (Behind the Ear hearing aids). My bigger concern during that visit was the irritation under the right side of her trach. Ever since the pulomonologist increased her trach size (and thus the shape of her trach) we've dealt with a very irritated spot... so bad that it became a Grade 3 pressure ulcer and her ENT was just as displeased as we were. Much to the chagrin of the doc that wanted her trach size increased, I have since put back in the smaller trach to relieve the pressure on her skin and, thankfully, the nasty ulcer quickly healed. Now we need to see pulmonology to find out what they want to do. The only thing I know is we won't be putting Gracie through that kind of discomfort again... they'll have to figure out another way to protect her floppy airway.

And, speaking of trachs... My sweet girl has become a trach yanker in the last week. (John and I have always felt so lucky that Gracie has been a "perfect trach child" - - never really tugging at it or pulling too much on her ties. Those days, sadly, seem to be over.) What does "trach yanker" mean, you ask? Well, last Friday, she was in the family room laughing hysterically and I realized she sounded "different." I came out from the kitchen to find her trach out and her hand over her stoma as she's blowing air against it, cracking up and quite pleased with her little self. Then, this past Friday night she did it again. And, yesterday, she did it four times. For those of you who don't know, this is NOT good. Trachs must be sterile (or clean) and once it's out, it shouldn't go back in without proper cleaning. I have four more trachs to clean today. She just cracks up at me when I sternly sign "no" and put in a new trach. What's terrifying about this, more than the germ factor (which is huge, of course), is the fact that while the trach is out, something could easily enter that stoma and get lodged in there and/or inhaled into her lungs. She also has a floppy airway and the trach helps support that and keep it open. And, she can't swallow her secretions, so if the stoma closes up enough (which can happen quickly) that I can't even get our smaller, emergency trach in, she could choke or drown on her own saliva. If only she understood this... perhaps she wouldn't think it is so hilarious. Grrr.

Cardiology
Pressures remain stable, volume is still within acceptable (non-surgical) ranges and though her mitral regurgitation is moderate, she is no longer showing any signs of borderline heart failure. Great news!


We will continue to see him every three months to monitor the pacemaker in between the phone monitoring we do at home. He said, "I don't think we need to echo her again for a year unless she is symptomatic or starts having more "normal" activity for a child her age." I took this with a grain of salt, chuckled at him a bit and asked him to knock on wood because in the spring of 2006, we heard something very similar from her cardiologist. By July she was in early stages of heart failure and by December 2006 she was having her third open heart surgery. (By "normal activity" he means walking, running, etc. It might sound weird to say I hope he needs to echo her sooner, but with respect to "normal activities," I can only dream he'd need to!)

Dentist
Both kids went last week. We feel so lucky to have two kids who truly enjoy going to the dentist! :-) Unfortunately, we learned that Gracie's enamel didn't form properly on her permanent molars (probably due to how sick she was during the time the enamel formed on those teeth), so we will be having to keep a close eye on those... plus she is such a grinder, which doesn't help matters. She also has terrible recession of her gums where her bottom two front teeth are, so we will also be keeping a close eye on that as, sadly, some grafting will probably be in her future. He said that it's not anything we are or aren't doing... just the way it is for her. Bummer.

That's it... for now! Isn't that enough?!

Coming soon:
Follow-ups on most of these appointments, plus endocrinology, infectious disease, pulmonology and audiology (which has been cancelled four times since last June due to hopsitalizations or illness). Good grief!