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.

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!

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.)

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!)

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. 

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!

Family Reunion

Since my sweet girl is, sadly, down for the count with yet another abdominal migraine cycle and I'm up with her suctioning a lot, I thought I'd use the time to do a little holiday catch-up on the blog.

For Thanksgiving, we took a road trip (a total of 18 hours in the car with traffic... the kids were better behaved than their parents!) to Arizona to visit my brother and his family. I couldn't post (or I guess I should say, "didn't want to post") pictures of the trip because I wanted to make photo books as Christmas presents. Now that the holidays are over, some of the amazing shots taken of our little family reunion need to have their glory here on the blog!

"The Men" captured as we walked through downtown Prescott
We had such a great time with them, and despite the fact that the dry, cold air wreaked havoc on Gracie's trach, she traveled like a champ (and was still wanting to be naked in the below freezing nights!). It was great fun seeing all four of the kids together, especially my nephew, Jackson (20 mos at the time), with Preston. They were adorable to watch - - Preston thinking he was "all that" as the older cousin and Jack looking admiringly at him. The trip was a long time coming - - we hadn't seen each other since Jack was about ten weeks old - - and I can't wait until we can visit again, soon! My dream would be for us to end up living near each other so that the kids can grow up together and pictures like these would be a regular occurrence.

My brother teased that I was like a tourist, clicking away the entire time. Now, though, I think he's super grateful I was stalking everyone like the paparazzi! I can't post them all, there are too many, but here are just some of my many favorites!

My brother, Brian, with my nephew, Jack, and me with my kids.
(My niece, Makenzie, was home that day with my sister-in-law's mom.)

Such a nice looking group of men, if I do say so!

Gracie loving on my adorable niece, Makenzie.
Gracie used to play with Preston just like that for hours on end!

Boys and Sticks... the perfect combination!


My gorgeous sister-in-law, Vanessa, with sweet Miss Mak

The kids having a blast playing in the leaves that were piled high in a courtyard outside a cafe (where I happened to have the best latte in my life!)

A new aide... a new chapter

Gracie's new aide was officially hired this week. Having worked well with Gracie in the past, Robin was an ideal candidate because of her experience - - Gracie's care wasn't foreign or scary to her. (Last year she was one of her trained subsitutes and, for the five days Gracie managed to attend summer school, she was her full-time aide.) After eight straight days of her working as Gracie's aide, I can say, with absolute certainty, that she is ideal for numerous other reasons.

Robin cares deeply for Gracie - - a casual observer could easily discern that. As her mother, it's important to me that the person working so closely with my sweet girl be affectionate and loving. At the same time, it's also important that Gracie's aide not be too doting or hover over her. While she requires constant supervision and a lot of help, Gracie is not helpless. Robin has already proven herself to be loving, but firm when necessary, conscientious and an excellent communicator with me and the rest of Gracie's team. She is eager to improve her signing skills and to learn how to best work with Gracie from an instructional aide standpoint. I am so thankful (and relieved) that she applied for the job and that the district had the good sense to hire her.

One of the bigger frustrations with the whole process was the lack of open communication (once again) from the administration at the district where Gracie attends school. Thankfully, our district of residence has a wonderful team that was incredibly helpful with bridging the (rather large) communication gap caused by the administration at the district of attendance (and further complicated by three different nurses on campus during the week instead of just one). They are on Gracie's side (and thus, mine) and have, hopefully, created a plan to implement and enforce better processes with regard to communicating about Gracie's care while at school.

Thankfully, Miss Gracie had a great week at school and seems to have handled the transition rather well. At home last week, I told her that Betty Lou was all done and that she wouldn't be at school anymore. I don't think it registered. On Wednesday, knowing that Robin had been hired, Gracie's teacher gave her Betty Lou's picture and signed, "finished." Then they put her picture in Gracie's "finished" box and showed her Robin's picture, explaining that Robin was her new aide. I was told that Gracie picked up Betty Lou's picture and held it for a bit, just staring. A while later she was upset and cried for about thirty minutes. They couldn't find any reasonable explanation and concluded it had to be about Betty Lou. When Gracie stopped fussing, she grabbed Robin's face to hers and loved on her, hugging her and not letting go. I think she wanted to bond... and perhaps that was also her way of saying, "Thanks for being here for me!" So cool.


Some photo highlights of the week... (I don't dare call this "Foto Friday" for fear of failing miserably the way I did last year!)

I took the kids for haircuts and a lunch date last Saturday.
(Preston's is still shaggy, but he can see out now! Gracie was long overdue and had three inches of scraggly ends cut off.)
They were so cute with each other, I couldn't help but click away with my cell phone.

My boys working on the Jeep. Preston handed John tools and was really quite a good assistant! I'm sure I will have many pictures like this as the years go on!

UNdoing the 'Uns' - A debt of gratitude

Gracie and Betty Lou
December 2009

As it turned out, Gracie's aide's last day was Tuesday. She and I had a good talk that afternoon, including some barely held back tears. Her decision was not easy, I know, and she is doing what she needs to do at this time in her life. We only wish her the best in her next endeavor. In all, I think we both got the closure that each of us needed. And, while it's closure of a chapter at school for Gracie, Betty Lou will always have a special place in our hearts and, hopefully, our lives.

Gracie started school here in April 2009. Since then, Betty Lou has taken the utmost care of her, working as her "do-it-all" aide, serving as both a health aide and instructional aide. Needless to say, there isn't anyone on that campus who knows Gracie as well (and that fact makes me more than nervous). I can only hope that whomever takes her place (as we still haven't been properly informed of the details... a big problem for me, but not one for this post) will be able to fill Betty Lou's conscientious shoes, keep an open line of communication with me and the team and learn to read Gracie's cues quickly (no small feat). And, I can only dream that they will love each other as much as Gracie and Betty Lou do.

Gracie and Betty Lou at the Deaf & Hard of Hearing Program's performance of "The Nutcracker" this year

"Un"

Lately, I have been feeling very "un." No, I don't mean the French translation of "one" as if to attempt to create a new trendy word for "one" or "zen."

I mean "un" - - uninspired, unrested, uncreative, unnerved, un, un, un.

I considered not writing about it... mostly because I am feeling the deep pains of writer's block and can't seem to squeeze out my thoughts without considerable effort... but I realized that, for me, being forthright about where I am and how I'm feeling might actually help me snap out of it. And, really, if I pretend to be more than "un" right now, what point would that serve?

I could be all flowery and try to fake my way through it... sort of stage my life for the blog... house not in shambles (yeah, right), kids adorably dressed and smiling (we know 'dressed' isn't happening for Gracie, at least not inside!) in perfectly edited photos as we take on the new year with all the gusto that I want to be feeling. My kids are too intuitive for that nonsense and wouldn't put up with it, first of all. Secondly, those of you who actually read this blog (there are some, right?!) would see right through it. And, really, if the point of our blog is to remember where we (the Flock as a whole, not just the kids) were at a particular moment, then this "un-ness" of mine needs to be part of it.

It's real. It's life. It's where I am.
Whatever the cause (or causes), it's more than the typical January duldrums that are so easily felt after the letdown of the holidays, when the magic of the season has faded, the pretty lights are all being put away and what's left is a serious sugar crash (at least for me!) and a return to the regular, everyday grind.
Furthermore, it's not about a pity party. Truly.

Perhaps it's the lingering effects of the last year. Granted, things could have been a lot worse, I fully recognize that. But we spent so much time on the verge of that possibility, that I think the wounds are still fresh and haven't yet started to scar. And, if I am being honest, we've spent the better part of almost eight years teetering on the ledge with regard to Gracie's health. She's amazing, resilient and inspiring... I am only tired. (And, because she is amazing, resilient and inspiring, I feel a bit guilty for saying that I am tired.)

As I mentioned in my New Year's post, there was a whole lot of decision making in our world, too, not just surrounding Gracie, but all kinds of life "stuff" that has left me reeling. Some of it is resolved; there's still big stuff to come. I know I am feeling uneasy in anticipation for all the changes on the horizon... but until we've got things truly set and decided, it's not really blog-worthy. The point is, the state of "flux" is really unsettling for me.

I don't think that any mom can honestly say they don't get into a funk every once in a while. I'm trying not to project the way I'm feeling onto the kids, but fear I'm failing miserably. My patience is thin; my temper is short. I can hear myself as I try to reason with Preston about something that isn't really that important and realize that my tone not nearly gentle enough, my voice a little louder than it should be and then I immediately feel guilty, knowing that the way I'm interacting with him is going to translate into his interaction with someone else. I find myself having moments daily that I wish I could do over... there is a lot of guilt in that. A moment here and there is reasonable, I suppose, but I am feeling like a lazy parent lately. The television is on too much, especially on the rainy days, and I feel like I just don't have the energy to be consistent, fair, reasonable... or fun.

My "to-do" list is much too long (just like every mom), yet my focus is blurred. My ability to multi-task has turned into countless started things and no real desire to finish any of them. Some of them must be finished, urgently, yet I'm still completely unmotivated.

The recent developments at Gracie's school have left me unnerved. Her health aide since April 2009 (who actually doubles as an instructional aide, though, unfortunately, that's not distinguished or specified in the IEP) resigned the week before winter break. She didn't tell me... and still hasn't really talked to me about it, which makes me unhappy and is a whole different story. Anyway, I found out by accident... no one who should have told me actually told me. And, now, her last day is Wednesday and there is a huge list of problems surrounding this issue - - none of which I have the energy to face, though I don't have a choice.

I could go on. But, given that my writer's block has caused this to turn into a giant, rambling mess that actually does sound like a pity-party, I will stop. I hope that getting it off my chest, out through my fingers and onto the screen will somehow give me the oomph I need to get out of my "un-ness."

In the meantime, I will try to focus on the positive things... it's just a bit unclear to me at the moment where that list is. {wink}