Happiness is... a lazy, sunny Sunday

It was beautiful outside today. And yesterday. We've lived here a year and I still am not accustomed to the fact that I can open all the windows and air out the house in January (you know... without freezing!). Happiness.


We had a lazy, fun day. I left the dishes in the sink and forgot about the laundry for most of the day. The kids took a long, splash-filled bath in the morning, we played with trains, read books and then headed outside for bubbles, basketball, oranges, baseball (Gracie loves hitting off the T, now, too!) swinging and an hour of play-doh on the patio. We were in the backyard nearly four hours and both kids had a blast. Happiness.





Happiness is playing so much that once you eat an early dinner, you beg for a movie, cuddle up with your pillow and multiple blankets and fall asleep for an hour with your favorite truck in hand.


Schulz:

Joy in January - - Happiness Is...

First and foremost, this is not an original idea... I have stolen er... copied er... borrowed it from my friend, Hannah, who did "Joy in January" on her blog last year and is doing it again this year. As January can be a bit hum-drum compared to the happy music, beautiful lights, delicious baked items :-) and general good cheer of December, the idea was conceived to help lighten (and get through) the hum-drum. The concept is simple... celebrate the joys that are found in each day. And, let's face it... Who can't use some extra joy during this month? Or anytime, for that matter?!

I am going to put a slight twist on it, inspired by a little book penned and sketched by Charles M. Schulz, Happiness Is A Sad Song. This is a book that my brother, Brian, had as a kid. He's five and a half years older, so when he outgrew it, it made it's way to my collection, and like many of my childhood books, I still have it (thanks to our mom!). Since he now has a son, I will pass it along to him along with some others that are on our shelves.

Anyway, just like "Joy in January," the idea of the book is simple - - find and celebrate the little things that make us happy. Granted, the title (and statement), Happiness Is A Sad Song, was lost on me until I was much older, but the rest of the book was easy to appreciate, even at an early age.

Each day (I hope...), I will share what defined our happiness for that day and perhaps something from the book as well.

Schulz:



Swann:

Happiness is breakfast for breakfast and breakfast for dinner!
This morning, for breakfast, we had fluffy Belgian waffles made on our fabulous new waffle iron. For dinner, I made a breakfast casserole. Yummmmmmy!


Happiness is an ice cream cone.

Happiness is getting to "eat" the remnants of your brother's yogurt (and have a few licks of ice cream!).

Hmmm... we had many other sources of happiness today... what does it say that I picked all "food" sources?
Perhaps I should have used this from Schulz' book instead, "Happiness is a side dish of French-fries!!"

Happy 2010 - The power of yet

Happy New Decade, Happy New Year, Happy New Day to each of you!

It's no secret that I strive to look at each day as its own miracle - - an opportunity for change, growth, possibility. With the turning of the calendar, it's engrained in us culturally to be hopeful and make resolutions. And, while I am all for hope and renewal, I just don't try to find symbolism in the turning of the calendar. That's just me... if it works for you, then more power to you! If I give that much weight to 11:59 on December 31st, and January 1st is a bummer of a day, then I'd tend to look at that as a sign for the year. I can't function like that! (It's the same way I look at a Monday... I don't let that day's outcome drive the rest of the week.)

Tonight, we bid farewell to 2009 and to an entire decade. In doing so, it's hard not to reflect on the changes that have occurred in our world and, of course, our own lives. While I find it so important to look back on where we've been (it only helps us in where we're going), I cannot spend too much time (at once) in a reflective place or I can start to get melancholy. I tend to question... overthink. Did I (or we) make the right choices? Did I (or we) do enough? I "what-if" everything that's already in the past rather than look forward. So, I (try to) reflect just enough to fuel the move forward.

As I look back on the last decade, there is just too much change (growth) to wrap my head around. Where John and I were as a couple (young, childless, wide-eyed at the possibilities of "our own" world), what was important to us (some of the truly important things, but not nearly as many of those as now), where we thought we were going (ah... the best laid plans), what we thought parenthood would look like (it's so much better, yet so much harder). It's impossible for me to imagine what ten years from now will be like. And, I won't try. If I have learned anything in the last ten years, it's that I can't possibly presume to know.

Likewise, if I reflect back to this time last year, I couldn't have foreseen where life would be today. So many changes. Good and bad. Some came easily. Others, much, much harder. So many miracles. Some disappointments. So many wonderful moments captured in our minds forever, stored in our souls like reserved breaths for those days when even breathing seems hard. The days when the power of yet seems too hard to fathom.

What's "the power of yet," you ask? It's quite simple, really. It's a tiny, three-letter word we learn as children, but for me, the meaning and power of which was not fully understood until I became Gracie's mom. I like to share "yet" with new moms of children with special needs as they learn to cope with delays in development or medical setbacks. It's something I use to turn a seemingly negative into a positive... it encourages possibilities... for every person and every situation.

For instance, last year at this time, a statement might have been:
- Gracie is not going to school full-time... yet. (She is now!)
- Gracie is not ready to use a reverse walker full-time... yet. (She is working on it!)
- Gracie is not ready to use a manual wheelchair... yet. (She's ready and waiting for her own chair!)

Or:
- We haven't made new friends here... yet. (We have made some great friends now and have new friendships forming. And, tonight for our last meal of the year, we shared a delicious dinner with dear, new friends who were our "yet" friends last year.)
- This new place doesn't feel like home... yet. (It does now!)

Things happen in their own time, as they're meant to, and we only need to believe in the possibility... the power of "yet." Today, I share it with you and encourage you to try it. It's empowering and it's hopeful - - a fitting concept for the new year and decade - - a fitting concept for every new day.

Collage Catch-Up

After missing weeks of Foto Fridays, here is a collection of collages highlighting just some of our fun since Thanksgiving week.
(The kids' Christmas Programs and Christmas will follow soon!)



Thanksgiving at Nana and Papa's house


While we were playing at the little park at Nana and Papa's, a super affectionate black cat (who reminded me so much of one of the cats we had when I was little) spent over an hour hanging out with us. Both kids were smitten with this kitty! Gracie recognized what it was and signed "cat" unprompted!


I cautiously gave Preston my camera to take a few shots of the kitty. I love this one - - the cat's off in the distance and Preston's shadow holding the camera is in clear view.


He also took these of himself when he turned the camera around! In all, he took over 60 pictures in a handful of minutes.


Snow Day!


We took the kids to play in the snow for a bit the day after Thanksgiving. Gracie enjoyed herself for all of ten minutes, but loved looking at the snow from the car! Preston, on the other hand, had a blast! He sledded, had a snowball fight with John and face-planted into the fluffy white stuff a half-dozen times!


Our trip to the San Diego Zoo



Gracie loved the camels, but the hippos were her favorite.

Decking the Halls
Each year we get an ornament for each of the kids - - a tradition my mom had for us growing up. This year, Gracie's was a school bus (to commemorate the huge milestone of riding the bus) and Preston's was a fire engine (to remember his obsession with all things related to firemen and, of course, the kids' Halloween costumes this year). The picture of the fire engine was taken by Preston with my camera.


A quick visit to Santa at our neighborhood shopping center.
This particular Santa and Mrs. Claus were wonderful with the kids... and it was free to take pictures! We had intended this to be a "practice run" for waiting in the long lines for more formal pictures, but I never was able to justify the wait time and dress-up fiasco this year! (And, as far as the kids were concerned, they saw Santa plenty! Though Preston was particularly frustrated with each encounter because he never did find any reindeer on the roof!)


Baking our first cookies of the season.
Preston turned out to be an excellent little helper in the kitchen... he likes to press cookies, help with turning on the mixer ("Big Red"), add ingredients to the mixer bowl and "wash" bowls and spoons in the sink.


Gracie, sans clothing, of course, was very excited about "her dozen" cookies. The two trays of cookies featured in the next couple of collages were not consumed! They were made for fun... the kids got to roll the dough in the colored sugar (and stick their fingers in, too!), they helped press the cookies (with my assistance using a mug and cookie presses!) and watched them bake through the oven window.


I set the timer on the camera to get pictures of what we were doing. Instead of continuing to pay attention to the cookies, Gracie saw the light on the camera blinking and turned to it. She looked right at it, smiled and signed "I love you!" Too funny. As soon as the light stopped blinking, she went back to the task at hand. Needless to say, I cracked up when I saw the pics later that afternoon!


In addition to her silly antics during the timed photos, Gracie decided that the place mats were better suited as hats!

Wishing each of you a...

Preston's School Projects - December

Since they can't hang on the fridge or wall forever... and since I can't store every single thing in a box in the attic...

Fa la la la la, la la la la!

'Tis the season to be busy, Fa la la la la, la la la la!

This is the longest absence from the blog this whole year. Ugh! I am going to try to play catch-up, so scroll past this post to see a couple more! At some point, I might even cheat a bit and backdate my posts! Let's see if I can do a "nutshell" update... with pics to follow later.
(I'm never brief... who am I kidding?!)

- John had his first real vacation since April of 2008. Two full weeks - - with the way his schedule fell, he had 17 days off (though he did have court a few times and worked some overtime shifts). It was so very nice to have him around! Of course, he was off for 17 days and on day 18 (last Thursday afternoon), Gracie got the stomach flu (for the first time ever... and it was bad... poor baby. Preston had a head cold (no fever and acting fine, with the exception of taking a voluntary nap during the day!), so I had two kids at home who had to be separated. Poor Gracie was miserable beyond miserable and because I had to tend to her nearly constantly, Preston watched an obscene amount of TV. I'm happy to report that everyone is feeling much better. Preston, however, was not so happy about the sudden reduction in TV time!

- During John's vacation, we all (Sophie, too!) traveled north to Nana and Papa's for Thanksgiving. It was great fun... we got to spend time with them, had quick visits with friends, had a really nice Thanksgiving dinner and took the kids to the snow. Preston was really out of sorts without all of his own stuff and his "routine" at home, but as long as he was busy, he did okay... not great, though. Miss Gracie, on the other hand, was right at home at Nana and Papa's and didn't even bat an eye about taking off her clothes (even in the cold!) and settling in as if she were at home! In six days, we put 1544 miles on our vehicle.

- We went to the San Diego Zoo with our friends. It was cold (um... for San Diego... not by most people's standards of "cold"!). Despite the chill in the air and the pending rain, we had a great time. It wasn't crowded and a lot of the animals were active. Both kids loved it. Preston's favorites were the monkeys (shocker!) and the tigers (a mother and son who were playfully wrestling and running all around the multi-level quarters). Gracie's favorite was, without question, the hippos. We sat at the window below the water and watched them swim by. The first time one passed her, her eyes got very wide and she had this look like, "What the heck was that?!" After that, she sat mouth agape, still wide-eyed and signed for "more hippo" as the two huge hippos came by time and time again.

- We've been "decking the halls" - - Christmas tree up, mantle adorned, lights on the house, Christmas music on all the time (much to John's dismay, sometimes!), shopping (though not much mostly for the three toy drives and four food drives in which we participated!), wrapping presents... and more wrapping to come! I am happy to report that Miss Gracie has been loving the tree, spending hours under it going around and around to look at lights and ornaments. She has not attempted to eat a light bulb like last year! Preston walks around making-up his own Christmas carols by combining words from all the songs he's constantly hearing... too funny!

We've seen Santa several times around town at various parties and outings. We've not done the "formal" Santa pictures this year... jury is still out on that. I am having a hard time justifying waiting in the long line, not to mention the expense!

- "Big Red" our KitchenAid mixer has been getting a full workout, as has our oven! Preston and I baked cookies for the troops with the MOMS Club the first week in December and that was just the start. Since then, the mixer and oven have seen seven different cookie varieties and I can't even begin to tell you how many dozens of batches have been baked! I can tell you that I have had way to much of it myself... way too much, just ask my jeans!

- Gracie's DHOH program had a Christmas Performance on Thursday. It was so wonderful and heartwarming to see all the kids perform. The DHOH team, including administration, works tirelessly and with great passion to see that the kids in their program reach their fullest potential. They are an amazing group of people.

Sadly, my camera did not work well that day and, while I have pictures from after the show, most of the pictures taken during did not turn out because my flash wasn't working at a distance. The pictures are all black. I do have video footage and will try to put some of that together soon. I'm hoping that other parents and teachers will share what they took.

What I can tell you is that her team (and others who aren't "officially" part of her team) worked so hard to make sure she was a part of the show. They decorated her classroom seat with red fabric and built a bell around the back of it... and it had lights! It was amazing... and I cried when I saw it. She looked so stinkin' cute sitting up there! More than that, though, I was blown away by their efforts to include her and do something special. In true Gracie style, she decided it was not the time to cooperate, so she did not do any of the practiced signs or bell ringing during the show. Ha... not a shocker! And, while it would have been fun to see her at her "best" up there, we were just so grateful that she was there! It was a huge milestone.
Such amazing progress... in school full-time, five days a week. Who would have ever thought?!

- On Friday evening, Preston's preschool had their Christmas Performance. Oh. My. Goodness! So adorable! His class is 2-3 year-olds. They sang "Jingle Bells" as a class, the Bible Study participants sang (and signed!) "Let it Shine" and the Spanish Students sang, "Como te Llamas". Some of the kids were completely overwhelmed by all the families and cameras in their faces. Others, like our son, were totally unphased and just did their thing! Preston had so much fun and I don't even think he could hear half of the class sobbing (which was really cute, too!).

Thankfully, Gracie wasn't too stressed by the whole thing and John was able to get off work early and see the show. I got some cute, though partially obstructed, video. At one point Preston spotted John standing in the back holding Gracie and shouted, "Hi, Daddy!" He signed "I love you" to him, too! At the end, he bowed a couple of times while saying, "Thank you, thank you!" and then looked up at John, gave a thumbs-up and said, "I did it!"
Soooo cute and that's not because I am biased! It was just so cute!

I am hoping that some of the other parents (taller ones :-) with better location in the room) got better pictures/footage! Again, our camera is not flashing properly from a distance, so turning the flash off meant that the pics are pretty grainy.

After the show, the kids were invited on the playground where there was a petting zoo set-up. So sweet of the directors of the school to put that together for the kids! They all loved it!

- It's now Christmas vacation for Gracie (She only missed three days of school this trimester. One was because of a long appointment. Considering her health and history, that is nothing short of amazing!) Preston is off school starting the 23rd. And I am left wondering how I will entertain them both, especially once Christmas has passed, Nana & Papa go home and John is at work... ugh! It's only day one... and already I can hear the lyrics from "It's Beginning to Look A Lot Like Christmas."
You know the ones...
"... And mom and dad can hardly wait for school to start again!"

So... there's the "nutshell"... pics to follow... hopefully!

Three Word Sentence

At school on the Monday following Thanksgiving, Gracie put together
three signs unprompted...

"All done, no work."

That's my girl! No problem letting us know when she's had it!

Medical This 'n That

CHOC Rocks & Pop Rocks
Gracie's back at VitalStim! Yay! This wonderful news brought to you, not by my efforts battling insurance, but by the "powers that be" at CHOC and the (what I can only imagine to be) tireless efforts of the therapists in the Rehab department. As it turns out, many patients were having difficulty getting their insurance to cover the electrodes that are used as part of the therapy. (While the electric stimulation is part of the treatment, there are several modalities of treatment occurring at the same time - - all of that was covered, just not the electrodes themselves because the "stim" is considered experimental or investigational.) Several weeks ago (yes... so behind on updates!) I received a call from one of Gracie's therapists telling me that CHOC had made a decision (following the efforts of some of the therapists to find a solution) to cover the electrodes so that these patients can have access to the therapy. Problem solved - - CHOC Rocks!

A few weeks ago(er... several weeks ago), Gracie experienced Pop Rocks at VitalStim! How cool is that?! Never in a million years would I have thought that Miss Gracie would have that opportunity (I didn't even know they still made them, but even if I did know, I wouldn't have ever thought she could have them!)
When her therapist, Ally, placed a piece on her tongue, Gracie got a look on her face like, "What is that...? And, can I have more?!" Talk about a multi-sensory experience! I had a few, too, and was instantly transported to my childhood. Preston was with us, so he got to try a little taste, as well. Just like Gracie, he wanted more!

October Was A Rough Month... So I Made Some Changes
October proved to be a rocky month for Miss Gracie. I keep a daily log of her calorie and volume intake as well as notes regarding headaches, retching, etc. Not once during the month did she meet her full caloric goal and she had more "rough" days/nights than not. Not good. She saw her GI doctor on the 5th and she made some dosage changes in her meds in the hopes of helping her cope with feedings better. If anything, the exact opposite seemed to have occurred. (In fact, my fuller-faced girl - - as seen in her school picture - - has dropped over a pound since it was taken.) Because it appears that her feeding trends worsened with the dosage change, I have dropped the meds back down to the previous dosage to see if that is the culprit. Interestingly enough, it was also her "off" month of her inhaled antibiotic. Not convinced that has anything to do with this (it really shouldn't, in theory), but will certainly keep an eye on next month's patterns just in case.
She missed school the Monday after Halloween (even though her fever had been gone for 24 hours) because she was coughing so hard and requiring excessive suctioning.
Since I reduced her dosage (and since she's been back on her inhaled antibiotic), she has been having much better days. Time will tell as I continue the "experiment."
(Updated following the experiment... she's still much better than she was in October and she's off of the inhaled antibiotic again.)

Behavioral Pediatrician
We finally saw the behavioral pediatrician in October. Our main objective was to discuss the behaviors we have been calling "OCD" - - stripping her clothes off and refusing to wear any at home, repeatedly wanting lights turned on and off... no rhyme or reason (in our minds), wanting the TV on or off, wanting certain items removed from her sight line (again, in our minds, no rhyme or reason), always putting all of her clothes under the couch when she undresses... the list goes on and on. School hasn't reported any of these behaviors, but often when she comes home, she comes "unglued" and has many requests (demands!). After talking it out with the doctor (who totally passed the "coffee test," Hannah, she commented that it sounded much more sensory than obsessive. It was like getting smacked upside the head... I know to always consider sensory issues first, but somehow, had gotten wrapped up in the repetitive nature of the behavior that I forgot to consider the source of the behavior. Uh... DUH! Experts (David Brown) have been to our home, met Gracie multiple times and we have discussed these very issues on a smaller level. She's older now and the behaviors have evolved, but so has her level of input during the day. This all coincides with increased activity level (school every day... therapy several times a week, etc.), so it's no wonder that her coping mechanisms (behaviors) have changed. I shared the conversation with the doctor with Gracie's team at school and we made a plan for more proprioceptive input and a more varied and rich "sensory diet" than what she'd been getting. So far, so good. Although, she still won't wear clothes at home... even when it's freezing cold outside! She can still wiggle her way out of every contraption we've tried, so for now, we are letting it go. She has very little control in her life... so if this one thing (at home only!) makes her happy, then what's the harm?

Cardiology
Gracie saw the cardiologist on Veteran's Day. Since she's likely getting closer to needing her mitral valve replaced, he decided he wanted to get a better picture of what everything looks like - - measurements, pressures, etc. - - so he has scheduled a heart catheterization for January 19th. The other issue is that Gracie's pacemaker generator is using the battery far faster than anticipated at her replacement surgery in August 2008 - - and faster, again, than what was indicated at the last pacemaker interrogation. This is because she is completely dependent on it and, most likely, because scar tissue has continued to form around the external leads on her heart. Because she is so small, her pacemaker is in her lower left side rather than implanted in her heart. Thus, the leads (wires) that run from the pacemaker to her heart attach on the outside of her heart rather than the inside. This, by nature of the design, is less efficient than the pacemaker that is implanted directly in the heart. The catheterization will give a better picture of the tissue around those leads, as well.

We are nervous... it's "routine," but nothing is ever "routine" when it comes to your child. And, though we've experienced so many procedures and surgeries (including multiple open heart) with Gracie, this is her first time in the cath lab.

Gracie's School Projects - December

Since they can't hang on the fridge or wall forever... and since I can't store every single thing in a box in the attic...

The pillow was made in school as a gift from Gracie to us. So sweet... we love it!