Happiness is... loving thy neighbors and my daughter

Gracie's been having some fairly rough days. For most of the week, she did not feel well and had only little pockets of time where we'd catch glimpses of her perky self. She missed school Wednesday, perked up a bit Thursday (still only a mediocre day overall) and has been laying low all weekend. She has had difficulty tolerating her feedings, she's got a lot of chest congestion and her eyes got extremely goopy as the weekend progressed. (I think she might have a sinus infection - we have an appointment first thing Monday morning.) She's getting 'round the clock breathing treatments (she's the perkiest immediately following those), two of which, because they're coupled with her regular treatment regimen, take well over an hour.

On Saturday, she didn't emerge from her room until almost noon. Up until that point, Preston (with the exception of suctioning every fifteen minutes or so) had my undivided attention. Thus, I felt slightly less guilty when Gracie demanded my complete attention. She finally signed that she wanted a bath - - and she immediately got a long, prune-inducing, steamy soak with her brother! (Thankfully, he thought it sounded fun, too!) After bath time, Preston was begging to go out and play at the park. Just as I told him he could play in the backyard, our phone rang. Our friends (and neighbors, Rachel, Lance & Addison) asked if we wanted to go to the park. I explained Miss Gracie's situation and they said they'd take Preston. He was ecstatic and I was so grateful that he'd get a break from the house. I planned to knock out one of those hour+ nebulizer treatments while he was gone. (Understandably, he's not overly fond of the continuous noise of the machine - - not to mention the fact that both Gracie and I are completely occupied.)

As it turned out, they didn't just take him for an hour. He was gone the rest of the afternoon, used the potty at their house a gazillion times (the kids were motivating each other, we think!), had dinner with them and came home around 6:30 happy as a clam and exhausted! He was out by 7 pm! I just love our neighbors! They are so good to all of us! (Tonight, they brought us a huge variety of rolls from a sushi restaurant... so sweet!)

Here's a precious picture of the "happy couple" as they watched part of a movie.
(They actually did more playing than watching, but Rachel told me that when they did stop and watch, they were all cuddled up!)

While they were loving on my boy, I got in some good TLC time with my girl... time that didn't solely involve therapy or appointments. (I say that because with the exception of our "quality" time in the middle of the night, lately I feel like my alone time with Gracie revolves around therapy and appointments.) We did her marathon breathing treatments and CPT. After that, she actually asked to sit at the table and I, of course, obliged! She refused her hearing aid, threw down half of the stuff I brought her and didn't want to "listen" to anything I signed to her. I pulled out the laminated, colored shapes I made ages ago and wanted to see if she could match like shapes (by giving her a red triangle, red circle, red square, a red rectangle and then a match to one of those... the idea is for her to place the match on the board). She refused... fine. She's sick... she's in charge. I didn't care what she wanted to do, I was just glad she was doing something other than lying on her bed.

What she wanted to do was name colors (she's been doing this for years)... colors of the bears, the blocks and the laminated shapes. So, I put eight squares on the Velcro board and let her go to town! I purposely sat on her blind side so she wouldn't be as distracted by the camera. (Oh... and, yes... she's completely deaf... and yes, I talk to her like she's not... but she is. I just can't not talk! ) I did not sign any answers. I did try to get her to "find green" instead of randomly picking them up, but she ignored me! Other than that, I just signed to her when she needed to "do better" with her signing or "look and try again" when she made a mistake.



You can see in her sweet face that she doesn't feel well - - she's mottled, red-eyed and puffy - - but that didn't stop her from doing her colors! As always, I am amazed by her spirit and will. She felt cruddy... no two ways about it... but she still wanted to try and do something.

After "table time," we cuddled up and spent the better part of an hour staring at each other and exchanging Eskimo kisses! Today was a bit better. Hopefully, tomorrow will be, too.

Happiness is... Foto Friday 2, vol. 3

When you look this cute, who cares about Helmet Hair?!
In an effort to get Gracie used to wearing a helmet (wish us luck!), we keep sticking Preston's on her head for brief periods. This time, while she still wouldn't let it be fastened, she did have a great big smile on her face. I figured if I took her picture and she could see how cute she looks, she might be more compliant!

Little Drummer Boy

Happiness is... remembering

On Monday, Preston got a haircut. (Gracie just had one four weeks ago, so isn't due yet.) His hair is short and should be just the right amount of surfer-boy shaggy by the time late spring rolls around! There's nothing like a fresh haircut to alter a child's appearance... and pull at this Mommy's heartstrings! It reminded me of the short cut he had last year, so I pulled up an older picture of him. The next thing I knew, I spent the better part of two hours steering down memory lane watching videos and looking at pictures of my "babies" - - and, when I do that, I feel this tiny (okay, huge) tug in my heart. While I thoroughly enjoy where they are in their respective developmental stages, in some ways, remembering makes me want to freeze time.

They both have changed so much, though, for obvious reasons, Preston's changes are far more noticeable on the surface and happen much faster than Gracie's. Their progress is miraculous, beautiful and, of course, very different. His changes come naturally and fairly easily while hers have months or years of patience, persistence and work behind them.

So, back to last night... I watched this video I made last January and realized I had tears in my eyes and an enormous lump in my throat. So much change and growth has occurred in twelve months; it's astounding. I am glad and grateful that I spend time (usually while up with Gracie) documenting things my kids do, uploading pictures & videos and gathering my thoughts about it all so that I can easily indulge my mamaheart and remember the littlest things with the simple click of a button.

(Things like exactly long it used to take Gracie to toss a ball, how she'd sweetly clap for herself, how much joy swinging gave & gives her.... what Preston looked like when he'd point to his body parts, how he loved swinging his sister, what he looked like when he signed "throw" to her and what he sounded like when he said "buh" while signing "bug." All of that has changed now, but because it's captured in this format, I actually do have little moments of them frozen in time.)

Photo and video editing at www.OneTrueMedia.com

Happiness is... cake bon bons

Tonight, our kind neighbor shared this sinfully delicious treat with us...

There may or may not have been more than this when she gave them to us!! :-)

Happiness is... knowing you've made it through one more day

from the Charles M. Schulz book, Happiness is a Sad Song

Some days are like a comedy of errors.
Some days feel like the better choice would have been to stay in bed and try again tomorrow.
Some days being a grown-up with responsibilities just stinks.
Today was some sort of day in our house and it made me (and John) happy to just get through it.

Is it a full moon? Is something way off balance? H- is mercury in retrograde again...?! :-)

And it wasn't just us. It seems like something went on with so many people we know. Serious things... surgeries, illnesses, hospitalizations... and those are far more concerning than the things that happened in our house. Nevertheless, it was still one of "those" days.

Some days, the washer overflows (which ours did today).
Other days, your cup runneth over.
Thankfully, most days, it's the cup.

Happiness is... Go Kart World

John took Preston to Go Kart World today.
He had a ball "racing" around the track like a "big kid!"

Happiness is... the storm's reward

After six straight days of the sky's incessant sobs, flooding, a tornado (yep... a tornado in So Cal!), the clash and flash of thunder and lightening, the clouds have finally parted and offered a brief reprieve from the storms. (It's supposed to storm again Tuesday... ugh.)
Today, the sky was blue and the air, while cold, was clean (yep... clean air in So Cal!) and, but for a few wispy, non-threatening clouds, it was crystal clear.




It was so clear, in fact, that standing at my kitchen window early this morning, I spied the same beautiful view that I saw following a storm last year. Today's view, though, was much more breathtaking simply because of its contrast to the dark, angry skies we've been seeing for days now. The snow-capped (snow buried, actually) mountains off in the distance were beautifully offset by the baby blue sky - - a gorgeous reward left by the storms.

Happiness is... Foto Friday 2, vol. 2

From today...

This afternoon, my sweet little angel made this mess while I was on the phone making two doctor's appointments for her. She wanted a bath, I told her she had to wait, Preston opened the bathroom door for her and she proceeded to pull towels down from the rack and unravel almost an entire roll of toilet paper by pulling it down with her feet and moving it all around her. Even my sweet girl can be naughty! When she saw me pop my head in the bathroom door, she looked up and signed "No" to herself!


Rainy day gear: Fireman hat, jacket and boots.
Rainy day treat: Kid's hot chocolate, ordered all by himself!
I asked, "Is it too hot, Bubba?" He responded, "No mama, it's not hot. Just warm."

From last weekend...

Did you know what hard work Play-doh could be?!


Such concentration!


He's giving me a couple of his many "looks." These two say, "Mama, why are you taking my picture again?" and "I'll stand still, but I will not smile."

Happiness is... a full recovery

Miss Gracie ended up spiking an alarmingly high fever on Wednesday night. She was lethargic and extremely puffy all day, even with extra doses of Lasix (which she's been on her entire life). We'd expected her to be tired on Wednesday... she was up most of the night Tuesday because of the anesthesia, but she never wanted out of her room the whole day. Then the fever spiked and, at first, wouldn't come down with Ibuprofen and Tylenol.

I spoke with her cardiologist Wednesday night and that calmed our nerves. He said to give the fever until morning (unless it got any higher) and give an extra (an extra, extra) dose of Lasix. By late this morning she wasn't nearly as puffy and was much more herself. She even began begging for a bath, which was forbidden for 48 hours post cath. Thankfully, her 48 hour window expired right when the begging started After a forty-five minute soak, she was her sassy, silly self. Hyper... lovey-dovey... happy... stubborn... bossy... and we were thrilled. Yay for full recovery! She will be so excited to go to school Friday - - even if only for one day!

As for me, I'd hardly slept in two days (more deprived than normal!). That combined with Gracie's fever, the horrible weather and Preston being sick, not only had I not left the house, I'd been in the same PJs since Tuesday night. (Ew... gross... did I just admit that?!) When I blurted that realization out loud, John promptly sent me to the shower and then kicked me out of the house to go get the pedicure he'd suggested last week. This time, I did.


A recovered girl at home with her Daddy and brother, a Starbucks (not spilled on me this time!), a book and a pedicure... Mommy recovery!

Happiness is... the power of Ducky

So, I have to confess... when I said that I was alone with Miss Gracie yesterday, that wasn't entirely true. Meet Ducky...

... he was there, too. Ducky was in a basket that my brother gave us while I was in labor with Gracie. He was transported to the NICU with her the night she was born and has since been required to accompany her at every hospital stay. He's been present for every single hospitalization, every single anesthesia, every outpatient procedure, every surgery. His presence isn't so much a comfort to Gracie, as it is to us... and he is always the first thing we pack.

Yesterday, they kept trying to give him back to me, for fear he'd get lost - - which was sweet - - but I let them know that they just needed to pretend that Ducky was a part of Gracie. If they weren't planning on misplacing her, then they wouldn't misplace him. This earned a chuckle and then I explained his significance. I also let them know that Daddy wasn't going to be there, which was a first, so Ducky had an even bigger job.

I think the anesthesiologist, though a very tall man with an even larger presence, was a big softie about Ducky. (He also took an interest in signing and signed "duck" and "ready" to her... which is a first for any doctor, ever). Once he talked to me about Gracie, he made sure I saw that our stuffed friend was sitting at Gracie's feet keeping an eye on the recovery nurse. I think he, too, believes in the power of Ducky.