See Ya 2010

Yes, I am still the same girl who believes in the power of yet.
Yes, I am still the same girl who believes that change and resolution can (and should) be made any hour of any day, not just at the new year.
And, tonight, I am the girl who is so incredibly glad to bid farewell to 2010.
In case you haven't been following along, 2010 was not a good year for the Flock.

Yes, we made some great memories.
Yes, there were many wonderful moments.
And, yet, I'd be stretching the truth to its very seams if I were to say that the majority of those memories and moments weren't made around awful circumstances.
We made the most of what was going on at the time - - that is what we do. We celebrated the little things because they were happening, regardless of the other ten not-so-little and not-so-good things that were also happening.

Gracie's health was poor all year - - she began the year battling endless infections and life-threatening feeding issues that literally left her emaciated, weak and desperate for nutrition. She was septic four times, twice in septic shock, had major abdominal surgery, and continues to battle those relentless infections. And somehow, because that's what she does, she rallied through it all and just keeps rallying.
(She even ended 2010 with a nearly five day stretch of an abdominal migraine that lifted just enough this evening to allow her to spend about an hour and a half with friends at a New Year's dinner party.)
Throughout the year, John and I made difficult personal decisions, financial decisions and family decisions. And, needless to say, we made excruciating decisions regarding Gracie's health, her care, her life - - we did way too much thinking, we were all tested way too much - - physically, emotionally, spiritually. I am so relieved that this is the end of 2010 and that tomorrow we will be looking at a new family calendar on our refrigerator... changing it will give me great pleasure and, what I hope is, closure to this period in our lives.

In true Swann family fashion/function, John and I divided and conquered tonight. While Preston and I stayed late with dear friends to have fun and celebrate the New Year, John took Gracie home early (he has to be up at 4:30am for work). Just moments ago, before the clock struck midnight and before I started this post, I kissed both of my sleeping children and my husband and whispered to each of them "Happy New Year... See ya 2010."

Merry Christmas!

"I'm almost four!"

This is his "If you're going to take my picture, then I won't smile" face.
When I look at this picture, though, I don't see that face as much as I see a little boy who is not-so-little anymore! Sigh. And, though he just hit the three and-a-half mark in November, he likes to tell us that he's "almost four like his friend, Adam."
All I want to do is squeeze him tight and tell him to slow down.

As most parents of three and a half year-old boys will tell you, your pride in your son's behavior can swell at one moment and tank the next. You can be so thankful that he made the good choice and then five minutes later be discussing the poor one that surely involved using a naughty word, not listening or being too aggressive. You can feel the tears sting your eyes as he shows (what you are certain must be) more compassion than any other child his age ever has and then, in the next instant, wonder who the monster is that previously was the sweetest boy on earth. While I say this in a bit of jest, it is not really all that inaccurate these days.

Taken on a very hot, static-hair sliding day in November!
I love our boy... so much. He is smart, kind-hearted, sweet, compassionate, a fierce protector and defender of his sister, a major jokester and he still loves to cuddle. He has excellent manners, gives unsolicited hugs and kisses, will tell you how much he loves you and sign it too, completely unprompted, because that's how he feels. He is social, curious, competitive and athletic. He is as busy as can be - - his desire to ride his bike, play outside with his friends and play any sport you can think of is well-matched by his desire to play with puzzles, practice writing and use the computer to play phonics games.

All of these wonderful things and so many, many more make up the little boy that John and I brought into this world... a little boy who, along with all these things, has the power to reduce me to an exasperated, frazzled parent who, in order to keep her word and remain consistent in her parenting, has literally left the park with that same son dangling from her hip, screaming (him, not me), my hair disheveled, a snack bag flung over my shoulder, a ball under that same arm and a bike being dragged by the handlebars back to the car (because, thankfully, I had the foresight to drive instead of walk to the park) all because I had to tell him for the third time (and, really, once should have been enough) that he could not climb down the super tall ladder thingie that only daddy is tall enough to reach! Ah... good times! The lack of napping (otherwise he's up until midnight) certainly hasn't helped the ability to rationalize with him in the late afternoon, either.


In all seriousness, I am amazed at the little person our son has become. He is all those wonderful things I described (and more) to his very core. He does and says the sweetest things and, at least once an hour, slays me with something so wonderful and quintessentially "Preston" that my heart nearly explodes.

One of the things he has been doing for a while is getting up from the table to walk over to John (because he usually cooks dinner), hug him and thank him for a yummy dinner. Just the other night, I walked out of the kitchen after having done the dishes (because that's usually my role) and Preston said, "Thanks for cleaning up, Mommy." So sweet. And, a reminder of how much he listens to how John and I speak to each other. I always thank him for making dinner... he always thanks me for doing the dishes. I love that Preston's character makes him care about emulating that behavior and that I can always count on a, "Bless you," from a little voice across the house when I sneeze.

Back in October (when Gracie was in the PICU with pneumonia), we had three straight days of grey skies and rain, after which, the clouds parted in the most beautiful layers right at sunset. I viewed it from a west-facing window at the hospital, where I lingered a little longer just to take it in. I later told John about it over the phone and asked if they saw it at home. John said that they were playing outside, went in to get a sweatshirt, walked back out to the driveway and Preston exclaimed, "Daddy, look at the beautiful, pink sky." I love that he, while so focused on playing, takes in and enjoys the beauty around him.

The boy loves puddles... as he should!

On his actual "half-birthday" in November, John took him to Play-it-Again Sports to buy a big boy bat. These video clips were taken on that day... they now take everything over to the baseball diamond at the park where Preston can crank a slow-pitched ball to the grass of the outfield.





He and I had our first movie date together. He's been several times, but always with Daddy or friends. We saw, "Tangled" and it was, in his words, "totally awesome, Mommy." I agree... a fabulous little movie, but my date was even better.


He likes to ruffle up his shaggy surfer-ish hair... and, quite frankly, does a pretty good job! A few weeks ago, I took the kids for a long walk around the neighborhood. Preston rode his scooter for a loop around a couple of blocks, then we traded for his bike. Next we stopped at a school playground. When he took off his helmet, he ruffled up his sweaty hair and said in the most dramatic voice, "Oh No! Mommy, we forgot to put Wacky Wax in my hair!" He cracks me up!

Daredevil
We have, lately, been hearing tidbits of ourselves disciplining him echoing back at us. It's hard not to bust a gut when it happens. For example, the other day, Preston ran into the bathroom to "do his business." He was moving so quickly that he neglected to turn on the light and, from the toilet, called to John, "Daddy, please turn on my light." John told him, "Just a minute, buddy." To which Preston said, "Now, Daddy. One... Two... Three..." Hilarious! (The counting thing is another topic, entirely. If we say "now," then why on earth are we counting after that? It's no longer "now" if we follow it up with the extension of counting... and yet, we do.)

Ah... the constant test of parenthood to my "almost four year-old" - - to be consistent, to keep a straight face and to never, ever forget that he is always listening and watching our every move.

Santa Baby!

Last weekend, we went to see Santa with our good friends and neighbors. We were all excited (and maybe a bit nervous about how it would go), but no one could have predicted how absolutely perfect our "Santa Scenario" would play out!

Gracie, for the first time ever, was dressed in a tutu... made by our dear, talented friend in CHARGE, Amy Russo. Let's just say this... I will be putting this tutu on Gracie every single chance I get!

We arrived and there wasn't a line... at all. Turns out, they were going on a break for an hour and had already turned away several people. I plead our case due to Gracie's health and Santa begged his elves to let us in. (And, for once, I didn't let myself feel guilty about the other people who had been turned away and was just so thankful for this gift of compassion from the North Pole!) Thanks, Santa! Best present ever!

This could very well be one of my most favorite pictures of all time!
Santa sat alone with Gracie for a bit - - neither Preston or Addie were inclined to sit with him alone anyway!


Preston climbed up next and Addie was very content with just standing next to Santa... and then the paparazzi took over for the next several minutes! We got so many great pictures with their camera and ours, it was hard to choose!

I love that Addie and Preston are holding hands!

Say Cheese!



This one came out blurry and I was so bummed... Preston and Addie were exchanging the cutest look as Gracie looked on! It's not so bad black & white, and, fuzzy or not, I couldn't delete it!

"What?!"

"What?" Gracie signed, as I stood near the photographer trying to get her to look at the camera and smile on picture make-up day.

Since Gracie was scheduled to get her picture taken right when I dropped her off on make-up day, I stayed to help. It was comical... my girl wanted to turn around on the little chest they have the kids sitting on. She wanted to smile but turn her head completely one way or the other - - never front and center. So, when she opened her mouth wide and signed "What?" at me (which she does often) and I heard that the photographer got it, I knew that would be the picture I chose. Turns out there were two I liked, but this one, is by far, my favorite. It is so quintessentially Gracie and makes me smile, even chuckle, when I look at it.

We continue to deal with infection type illnesses (on top of abdominal migraines) and CHOC's Infectious Disease team has been following Gracie closely. We have become regulars at the lab, going nearly every week since October for multiple vials of blood at a time. The last visit, Gracie wheeled into the room, stuck out her arm with confidence and tapped the crook of her elbow with her forefinger. She is "trooper" defined - - she even watches the whole process and is clearly more bothered by the tourniquet than the needle itself.

Thus far, we've learned enough to create more of a mystery. In October, Gracie had strep-pneumo (Streptococcus pneumoniae) which lead to her pneumonia and another ICU stay. This is something she was immunized for as a toddler. We would expect that with the recent exposure and the immunization, she'd have at least some antibody response. You or I would... at least something. But, Gracie didn't. Zero. Nada. Zip. The Infectious Disease team is puzzled and ordered more lab work to test her antibodies to everything else she has been immunized for in order to see what her responses are. From those results, we will (hopefully) come up with a plan. The expectation is that Gracie has some sort of autoimmune disorder, but if one thing is certain with her, it's to expect the unexpected. I'll post more as we learn.

Back to the good stuff... Gracie's longest stretch of "space between" has been two weeks and five days. Since the last post about the shopping carts, we've had two periods of good space and, as it turned out, that longest stretch had perfect timing. Though John took a tremendous amount of leave over the four month period when Gracie was in the hospital a total of 48 days, he still had a two week vacation slated during Thanksgiving and the week prior. We tried to get him back on the schedule for one of the weeks, not wanting to use up more of his leave in case it is really needed. Turns out, it was needed... for all the right reasons. The long "space between" for Gracie fell directly into the time John was off... and we enjoyed every bit of it. (She lost four days the first week of December due to an abdominal migraine cycle, but has been back "in the game" since Monday the 6th.)

In our true "seize the moment" mindset, we have made every effort to capitalize on the moments that truly allow us to celebrate the "space between" and, even if just briefly, forget about the space to come. Whether it's the little things - - something Gracie did at school, sweet things that Preston says, milestones reached, or the regular, day-to-day stuff that makes me smile simply because it's regular, day-to-day stuff (like the shopping cart)... or the big things (like our family trip to visit my brother and his family in Arizona for Thanksgiving), there has been much to celebrate.

In addition to her remarkable resolve at the lab (which, while sad on the one hand because she is so familiar with the process, is actually really happy in that she is tolerant, she understands and she communicated clearly), Gracie has been feisty, full of energy and making progress on all levels. She has, in recent weeks...

- started back to therapy (Occupational and Physical Therapy... twice a week each, after school. Hopefully, after the start of the year, she'll resume VitalStim.) She is working hard and though she's lost strength and stamina in some areas, she has increased in others. Her (vastly) improved nutritional status has made a tremendous positive difference, but has also caused a need for her to get reacquainted with her body, as it is 25% heavier and she is growing.

- has started doing her vest therapy in all kinds of positions... sometimes for postural drainage reasons, which is really quite smart! She also has been scooting on her bottom (more than her back), pulling herself up to stand more, requesting to stand more and cruising furniture (to the point that I'm afraid to step away!)


- wheeled herself around the Aquarium of the Pacific in Long Beach for the first time. She had a ball! She does, however, have a lot to learn about following directions (she LOVES being in control of where she goes and when, much like a toddler!) and the personal space of other people. She will just wheel herself right up to someone and wrap her legs around them or touch them if she wants to get more acquainted! Cute, but also not necessarily appropriate!


- come home with this note in her communication book...

"Hi Kristi,
Gracie worked well today. She did great in APE. Gracie caught the ball. Betty Lou (her aide) was holding her by her hips."

Do you realize, for Gracie, how much coordination that takes standing, even with someone supporting her hips? So cool!

- signed "wrong" at school when she was seated at the table with her friends for a painting activity. "Wrong" can mean that something is wrong with her, like pain. It also can mean "no." On this day (and others since), it meant that something was wrong with the situation. Gracie didn't get a paint shirt put on (because she often protests extra layers over her clothes and then wants to remove everything!) and all of her peers had theirs on. She did not stop signing "wrong" until they figured out that she just wanted a paint shirt like her friends!

- added to her bath time routine. After walking into the bathroom with hand-held assistance, she will climb the two steps of the stool, grab the counter (I will then let go of her) and she will reach over, turn on the light (perhaps several times!) sign, "light on, light off," admire herself in the mirror, brush her teeth (if I set it up for her), turn on and off the water, brush her hair, etc. SO CUTE!!! She will then, with hand-held assistance, carefully search for the step down and make her way to the tub - - all wonderful use of the vision she has and her awareness of her safety and the depth of the steps.


- really turned into a diva! Little Miss LOVES getting dolled up and especially enjoys getting her hair curled. (And, she still won't keep her clothes on! Grr!)

Shopping Cart

To the outsider looking in, these pictures might look like an ordinary family trip to Costco. And, while we regularly frequent Costco, I assure you, there was nothing ordinary about our shopping experience last Saturday. You see, our kids have never, ever sat in a shopping cart together!


I'm not sure who had more fun! While the kids were just plain silly playing with each other (Gracie especially loved playing with Preston's hair!), John and I were giddy with happiness watching them experience something others can so easily take for granted.


Although Gracie's had the core strength and balance for years to sit in a cart like this, she has always preferred being in her chair. When we've tried the cart, she has panicked and signed "up" or wanted to put her head down for stability and security. Plus, until she was about four and a half, most outings (aside from walks to the park), were terrifying for Gracie, causing a true sensory overload. Between all of those things and her poor health over the last year, there hadn't been a good opportunity to give it another shot... until Saturday. Suffice it to say that I have never enjoyed a crowded Saturday at Costco more in my life!

Trick-or-Treat!!!

One of only three pictures of both kids with all parts of their costumes on!!
(And, no... Gracie wasn't lovin' the hat!)

"To Infinity and Beyond!!!
Preston, as Buzz Lightyear, taken last Saturday before a friend's costume party.(He wasn't as cooperative for pictures on Halloween... we had to beg!)

Jessie, aka Gracie, was much happier without her hat!

The idea behind Gracie's "chair" costume - - a scene from Toy Story 3

Seriously love that I captured this - - it speaks volumes about what she thought of wearing the hat!
(Poor sweetie pie was sound asleep when I woke her up to get her costume on.
In all fairness, she was trooper! She didn't want anything to do with the party our neighbor's had, so she and I stayed outside and walked around while very kind friends kept an eye on Buzz until Daddy joined us.)

There definitely was a theme amongst many of the kids in the 'hood!


The tips of Buzz's wings lit up and flashed! They were so cool... and made it much easier to see him, as he was running around like a crazy child.
He wanted to be the first one at the door every time. Not the best way to make friends on Halloween... sigh.

Buzz, Jessie and Jessie!
Jessie, Jessie and Buzz!

Pa's Pumpkin Patch

On Tuesday afternoon, we took the kids to "Pa's Pumpkin Patch" in Long Beach. Aside from sitting in her chair for about 90 minutes at a birthday party last Saturday, it was Gracie's first big outing since being discharged from the hospital. It's not too far from our house... and is on the corner of Pacific Coast Highway and 2nd Street... so it is a "patch" of parking lot! But, the kids loved it. And, because of that, so did we! It is strange, though, to hear traffic from PCH and literally smell the salt water while picking out a pumpkin!

When Gracie was discharged last Thursday, they said she could resume all normal activity. I chose to keep her home, let her build some strength and, as I mentioned in a previous post, allowed myself to get us into a routine with her new marathon of treatments. As many of you know from facebook, Gracie went back to school Wednesday, had a good day and then spiked a low-grade fever that evening. During the night, her fever persisted and her secretions increased with a vengeance. The likelihood that this development is "bacterial" in nature is slim... she is on two heavy-duty, broad spectrum antibiotics. Her labs taken on Tuesday afternoon looked improved from discharge, so that is also a good sign, however, the labs weren't ordered to look for any fungal issues (like the yeast she developed in her PICC line over the summer) which are always a possibility when on antibiotics so much and for so long. Thankfully, we have a scheduled appointment with Pulmonology (our third appointment of the week) today (Friday), so we can get a better handle on what the deal is... I hope.

We almost decided not to go to the pumpkin patch on Tuesday - - we were going to wait until Thursday. I'm so very glad that we seized the moment and enjoyed that very small space between.

I took a ridiculous amount of pictures... and so many turned out cute that I had a hard time choosing just a few for the blog. So... enjoy the slideshow!

I have to mention a few highlights that aren't captured in photos (so I don't forget!)...

- Gracie, upon seeing the sea of pumpkins as we entered the gate, signed, independently... "Jack-o-lantern." And, while they were still very much "pumpkins," I was floored and so very proud. We had told her we were going to the pumpkin patch, we had never once signed "Jack-o-lantern."

- Preston, was terrified of the man who ran the little train ride... he had a long, Santa-like beard, with a spider dangling from it. Preston could barely look at him to say thank you for the ride. Let's just hope, for the sake of the Christmas tree patrons, he removes is eight-legged friend come November.

- Gracie was signing up a storm in the petting zoo, mostly prompted, but after we'd been in there a bit, several were unprompted and correct!

- Preston loved the House of Mirrors. LOVED. Gracie and I stayed outside and I heard this terrifying "thud," which I thought for sure was going to be followed by crying and a bloody nose, but instead, the most infectious laughter erupted. John and Preston rounded the corner inside and I could see them... both of my boys, giggling like crazy. Then, bam! It happened again. More giggling! When they finally made it out, we all cheered for joy (for the fun and no broken noses!) and Preston wanted to go right back in!

The Vest

Gracie came home from CHOC late Thursday afternoon. Friday, the 22nd, was a buzz of supply deliveries, new equipment set ups and general household chores which seem to multiply like fertile little rabbits while she's inpatient. Amongst the new equipment/supplies in our small, efficient home hospital, is "The Vest" - - a fabulous (if your child likes it - - which both of mine do... more on that below) airway clearance machine that literally vibrates the mucous right out of the lungs (or at least loosens it enough to be coughed or suctioned out).

Used every four hours while she was in the hospital, The Vest was very effective. The home treatment regimen is essentially the same as at the hospital, and thus, has me pretty overwhelmed. Gracie has so many treatments per day that it's taken me a few days to get a handle on a schedule that I could manage and make sure she tolerated. Her current regimen entails using the vest while taking a nebulizer treatment of Xopenex & Mucomyst. She stays on the vest for another neb treatment of Dnase, comes off the vest and gets a treatment of Pulmicort and then another of Tobi - - TWICE a day. In between these "marathon" treatments, she gets additional vest treatments with Xopenex every four hours. All of this, coupled with feedings, her regular meds and her added two-week regimen of both Cipro and Zyvox (both of which yield lovely diapers at least every hour) and you have a pretty busy kiddo (and mama) who hasn't even left the house! Add in three doctor appointments this week, a lab draw this week and three appointments next week and, well, you get the idea! It's worth it, though.

The Vest, it turns out, could be the big hero for Gracie, given all the bugs she tends to regularly host, plus the ones she is so easily picking up. Because her sinuses are chronic and she doesn't swallow, the bacteria that she harbors in those wide open sinuses easily travels to her lungs when she micro-aspirates. The hope is that the use of the vest will keep things broken up and moving out. Thankfully, she really, really loves it... all that input is like a dream for her! She happily signs for it (almost on schedule) by patting her chest (which is her sign for the vest) and then signs "trach medicine." It's quite possible this might trump her love for baths!

Preston, who did not visit her in the hospital this time, was fascinated by the new "shaky shake" machine that was delivered and wanted to know what it was all about. I explained to him that it is definitely not a toy, but also wanted him to get an idea what it was like for Gracie. Little did I know that videoing his three minute experiment would provide me with hours of enjoyment. John and I can't help but giggle when we watch him in this. I didn't include the whole thing... I think it's mostly funny to us because we're his parents! In any case, hope this little clip brings you a chuckle, too!

Angels Playground - - a fun day in the "space between"

During the last "space between," I took the kids to Angels Playground in Costa Mesa. Angels Playground is a wonderful, fully accessible park with fabulous equipment, sunshades and ramps all the way up the large jungle gym structure.

Saturday, October 9th, was a beautiful day - - the weather was warm, but not too hot, and it seemed a perfect opportunity to pack a picnic, load the car and make the drive fifteen miles south to check out the park for the first time. We had a fantastic time, so much so that we ended up staying over four hours! The park itself is huge... lots of grass, trees, hills, and water features including a small waterfall and duck pond.

A gentle breeze and abundant shade kept Gracie extra comfortable while she wheeled herself around the playground, checking out each area like an investigator. Preston, once he accepted the fact that she needed to do things at her own pace, found a boy his age (and a six year-old girl, no surprise!) to play with. He ran all around, frequently checking in with his sister, stopping to hang out for a moment or two before taking off again. The set-up was nice, as I could easily stay with Gracie and help her control her chair, while at the same time, see where Preston was. We will definitely be going back!