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.

Happiness is... coming home from the hospital

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

Gracie is home from her heart catheterization. She was discharged at 4pm after having arrived at 5:30 this morning. Needless to say... a long day, but one that she tolerated really well (with the exception of the first two hours post anesthesia) and one that yielded mostly pretty darn good news. When we got home, right around 5pm, she was groggy, but that didn't stop her from immediately stripping down to her diaper! That's my girl!

- The cath lasted a bit longer than they'd anticipated. They found a small PDA (patent ductus arteriosus) that wasn't in the "normal" area to find a PDA (no surprise for Gracie), but that we were told had closed years ago and was never mentioned in previous open heart surgeries. It was definitely not closed today (though it was small) and they inserted a coil to close it off. It probably wasn't making too much of a difference, but they figured since they were already in there, they'd close it and minimize excess blood flow given the mitral regurgitation.

- The mitral regurgitation (MR) is, per her cardiologist, "more than moderate, less than severe... moderate plus." However it's defined, it is stable and even though it's not ideal, her heart is coping with the MR well and is not affected by the subaortic membrane that has formed again. (Sub-aortic membranes commonly form following certain heart repairs. Gracie had one removed in her 2006 open heart surgery and has since formed another.) Her left ventricle and atrium are quite enlarged, but pressures are within acceptable ranges. One thing they said with certainty about the valve is that when it's time for surgery, they will not make any further attempts to repair it... it will be replacement time. Since the pressures are good enough for now and she is not showing signs of heart failure, and since she'll have to be on coumadin for the rest of her life once the artificial valve is placed, they have no immediate plans to replace it. The longer we can wait, the better. Her cardiologist was happy with the findings... he had anticipated surgery to be soon. This is all good news.

- Her pacemaker leads are intact and the integrity is still good. There is scar tissue that surrounds them, which is normal, is likely interfering with the amount of "juice" that's being used by the generator. She will need more frequent generator replacements than initially anticipated when her pacemaker generator was first replaced in August 2008. This is disappointing, but as her doctor kindly pointed out today, it's much better to replace the generator more frequently (which is not open heart surgery), than it is to replace leads (which would involve full open heart surgery) and cause more scar tissue.

- The doctor also informed me that the vessels leading to her heart are fully functional, but not at all in the normal position. (This is not a fact that John nor I remember learning previously... but over time, I think it's possible that some things, if not causing an issue, start to fade from memory.) He also said that he can see where things (heart, lungs) are starting to shift and change shape due to her scoliosis... a fact that is not good (though not unexpected) and which he'll share in the report for her orthopedist.

- When she was admitted, I asked if they might draw all the labs her endocrinologist had ordered (a full work-up) while she was under. They all were very willing to comply. Gracie's blood, however, wasn't. Her hemoglobin was low (9.9 - - normal is 13-15) prior to the procedure. They drew half the blood needed for the labs and tested her again toward the end only to find that her levels were still too low. They did not want to end up having to transfuse (neither did I), so we will go to the lab in a month and have the rest drawn. Her potassium was also low, but she'd been fasting and since she gets most of her nutrition at night, that wasn't a surprise. The hemoglobin will need to be checked further, though. Hopefully, we just need to up her iron intake with a supplement.

In all a "good" day... for having anesthesia and spending it in the hospital.
She arrived in good spirits, though was a bit peeved when she realized that we weren't there for therapy. She quickly calmed, though, and undressed herself once I sat her on the bed, played with toys and was a trooper. She smiled a lot. That made me smile. Our nurse, Jason, was a superstar and got her IV in the one try I allotted him. (She had Versed ahead of time and he used a J-tip to numb the site. She did not even flinch when he got her IV in. Beautiful.)

Recovery was a bit rough for the first two hours. Okay... a lot rough. She had to lay flat on her back, perfectly still and with her right leg completely straight. Her right leg is never straight... so I spent two full hours bent over her bed holding her down while she spent two hours agitated from coming off the anesthesia (understandable), irritated due to discomfort - - even with Demoral (understandable) and generally peeved at me for holding her down (totally understandable). It wasn't fun for either of us. So, when they finally let her roll to her side, she relaxed, O2 sats shot to 100% room air, she even cracked a tiny smile and then slept for the better part of two hours. The rest of the time she spent quietly watching "Signing Time" DVDs on her portable player.

We spent a total of six hours in recovery, being discharged following a torturous final thirty minutes of IV, tape and lead removal. I worked with the nurse in an effort to minimize pain and time. She had leads all over her little body and now looks a bit like a red leopard... poor baby. When that was all over, I signed, "Time to go home and see Daddy & Preston!" She practically leapt into my arms!

For the first time ever, John and I weren't together with her during an anesthesia procedure. Preston has a cold (again...) and couldn't go to preschool today. We had incredibly kind offers from friends to watch him, but in the end we decided it was best that John stay with him. He was pretty stressed that Gracie and I were gone when he got up. That coupled with him not feeling well and torrential (scary) storms, we know we made the right decision. We are so grateful, though, for the offers from our friends as well as Nana and Papa (who were crazy, but so sweet, to even consider driving hundreds of miles in that weather!). You guys are the best!

As it turned out, I think I had my pre-op funk last week in order to prepare myself (unknowingly, of course) to cope alone today... and to find the strength to hold down my freakishly strong 25 pound daughter for two hours! (My back, abs, neck and arms are sore! Wah! Poor me! Jillian and Bob would be so ashamed!)

Gracie is currently hyper as can be and showing no signs of sleep. Nor is she showing any signs that she is sore from the procedure or from fighting me... tough cookie! Having not slept much last night, I am too tired to function and too tired to collect my thoughts and be brief! Sorry! Such a long post... all to say she's home and it went well... long, but well.

Thanks, everyone, for the heartfelt emails, calls and texts today. Your love, support and prayers were felt by us all.


*** Added 1/20/10 after initial post ***
Since little details about certain part of Gracie's anatomy (heart and everything else) seem to slip out of memory if they aren't part of the current "issues at hand," I am coming back to this post to add one more item to the list of findings yesterday.

- During the cath, they were unable to pass the pediatric probe through her esophagus to do a TEE (Transesophageal Echocardiogram). Once the anesthesiologist met resistance, he stopped. This has not been a problem in the past (though she's not had a TEE since 2006), so we will need to address with her ENT and find out if there is a new issue. Thankfully, in a conversation this morning with, Ally, one of Gracie's Speech Pathologists, I remembered this detail... as yesterday, I was too busy holding down Miss Gracie's legs to write anything down!

Happiness is... thoughtful friends

Arriving just in the nick of time to save us all from the funky week, was a surprise package from our dear friend Hannah, her hubby Vince and their sweet, joyful Viv. Inside, a thoughtful note and the most adorable book Sugar Cookies: Sweet Little Lessons on Love.

This afternoon, the kids and I read it a few times. Then, they sat together and "read" it. Preston said, "Once upon time people make cookies," which is not (in any form whatsoever) how the book reads! Too funny, though! Gracie's favorite page is (quite fittingly for my love bug) about "Expansive Love" and features a little girl dressed in a leotard and tutu with her arms outstretched. (She loves the little girl!)

It is the sweetest (pun intended) book ever and it makes us so very happy. Thank you H+V+v!!! It is just what the Flock needed to brighten our days! You epitomize thoughtfulness.

******************************************************************

On Friday, Gracie saw her orthopedist for a routine follow-up. He kindly signed the prescription for her new wheelchair (fitted and measured the day before) with no questions asked, so that ball is finally rolling in the right direction.
As I do with most appointments, I had a list of hot points to discuss...

- Scoliosis - - has her curve progressed?
- Pelvic rotation - - is there an underlying problem somewhere other than her scoliosis causing this rotation?
- Right knee and ankle turn in when walking - - does she need any sort of bracing?
- Lack of weight bearing on right - - again... bracing? Is there an underlying issue?

There is good news and not-good news...

- Curve appears stable at this point. Good. (Still spine surgery in her future...) No need to brace her spine during the day. Good. (She previously had a brace, but wouldn't move a muscle while wearing it. Her whole team agreed that mobility was the most important thing so long as her curve didn't rapidly deteriorate. For those who don't know, a brace won't correct a curve, rather it helps slow the progression of the curve.)

- Pelvic rotation stems from the scoliosis... no other underlying cause. Good.

- Right knee and ankle don't consistently turn in with all of her steps so she doesn't need orthotics. Doc watched Gracie walk from the front and back without pants, shoes or socks (holding my fingers for balance support... first time she's walked any distance in a doctor's appointment! It was way too stressful in the past!). All good.

- He says her (teeny tiny) feet (size six... baby shoes!) are "beautiful, flexible and need no special attention!" (Eh hem... other than her beloved pedicures from Mommy!) Good.

- Lack of weight bearing likely stems from the rotation caused by the scoliosis. The curve and subsequent pelvic rotation have caused a leg length discrepancy (which we've known for years) and she always has her right knee bent. Clearly, muscle strength and development have been affected. There's not really anything to do about this other than hope, with time, she begins weight bearing more. Unfortunately, until her spine is straight, she likely will have that right knee bent. And, the longer it's bent, the less likely the muscles and knee joint in that leg will function normally. Ugh... wait and see.

- Because of the scoliosis that's caused the pelvic rotation, he is extremely concerned about her hips. After reviewing the additional hip film he ordered, he was pleased that her hips look "okay" given her rotation. However, there is spacing above the joints and his opinion is that if we don't do some preventative body bracing (yes... body... not just back), her hips will eventually come out of socket (painful) and she'll need surgery (very painful). NOT good.

He said he'd like her to wear the brace at night while she sleeps. Um... while she what? I explained her "sleep" pattern and also explained that she doesn't (won't) wear clothes at home, including pajamas. He said the brace won't hurt her skin if she's just in a diaper... so that's "good." I realize that it's a really bad thing, especially for her hips, that my sweet daughter likes to sleep (when she does it!) on her side curled in a ball. I understand that this is something we have to try, regardless of how much she hates it (and regardless of how much we hate making her try).

If we don't make an honest effort to put her in this brace and something does happen with her hips, we won't be able to live with ourselves. If we try (and try and try) and we aren't able to get her to comply, then at least we know we tried. But I'd be a liar if I said I am not dreading this with every fiber of my being. If she hated her old brace that covered "only" her torso, can you even imagine how she's going to react to one that goes from just under her armpits all the way down her legs... one that will force her to lay on her back? (Never mind my concern for my trached child not being able to be on her side at night to cough easily. I guess my lack of sleep (and hers... duh) is about to hit serious overdrive.) As if you can't tell, my "Pollyanna" personality is out the door on this one... say hello to "Realistic Rhonda" - - she knows this won't be pretty.

So, once we get through the heart cath this week, we will be getting Gracie fitted for a full body brace. Stay tuned.


*Crystal... can you please refresh my memory as to what led up to Eva's hip surgery? Thanks!

Happiness is... "1-2-3 Stomp!"

I love playing with my kids. I love teaching them, too. I especially love when learning can be disguised as fun so that the "instructional" time doesn't seem like it's work for any of us. That's why I love the game "1-2-3 Stomp!"
And, the happy dance that Preston does when he gets to stomp makes me so happy!





Preston and I opened this new game (I got it for the kids for Christmas) and played for about 30 minutes this morning before he was finally ready to move on. In the evening, Gracie played with us, too. She likes smacking the stomper and watching the numbers fly, just like her brother! For her, it was a good "Gracie's turn" and "Preston's turn" opportunity as well as identifying the numbers that we were looking for before we put them back on the game. While it's not a "deaf friendly" game, I can sign the numbers (or colors) that are being called out and help her put them on. There are many levels and game options, so it will grow with both kids... which is good because it appears that aside from wanting to sit on his numbers, Preston's got a pretty good handle on level one!

Happiness is... the return of Foto Friday!

It's baaaack!
Welcome to Foto Friday, Season 2!

Be still my mama-loves-watching-her-babes-with-their-daddy heart!
My girl loves her daddy! She was rubbing his head and patting his back... so sweet.


Taken on Wednesday during the four hour nap! Preston emerged from his room, begged John to hold him and they both went to sleep for two more hours! Again... be still my mama-loves-watching-her-babes-with-their-daddy heart!


Last Saturday - - the day we walked hand-in-hand - - Gracie and Preston painted on the back porch. As usual, Gracie was much more interested in painting herself! Although, I must say, she refrained from completely covering herself with paint the way she often does with pens!


This is what Preston looks like if you ask for his "policeman face!"
Hilarious! He loves this picture of himself because he's wearing daddy's badge!
If you ask him what his job is when he's pretending to be an officer, he says, "Get the naughty people and help people with the firemans and amblances."


On Monday, John took Preston into his office and he got to sit on a real Chippie Motorcycle... he was in heaven!

Happiness is... ABC Thursday

It's 11:57 pm and everyone is finally asleep.

I have DVR'd (is that a word now?) Grey's Anatomy and Private Practice and am now headed to my couch with a bowl of oatmeal (because it sounded good and I won't have to share!), an army blanket (thanks, Papa!) and no one else! :-)

I probably won't last ten minutes once I eat the oatmeal, but that's okay!

(Gracie had a great day today! Yay! Everyone seems to be back to themselves!)

Happiness is... new equipment

I wasn't so grumpy today... that was good.
Nevertheless, things were still a bit off.

- Gracie slept half the day at school and I ended up picking her up a bit early.

- Preston took a four hour nap... so he's still up now (it's well after 10), quietly flipping through a couple of books ("My Truck is Stuck" and "The Three Little Pigs") and watching Kipper on the couch.

- I treated myself to a Starbucks. The guy at the window asked if I'd like any napkins. I declined as I have a stash in the glove box and wipes of all sorts all over the place. He then handed me my drink (iced, thankfully) and as I passed it across my chest to set in the drink holder, the incompletely attached lid popped right off and I had a third of an Iced Venti Carmel Macchiato down my chest and lap. Lovely.
(For the record, this is the second time this has happened to me!)

- Because of her off day and the amount of secretions Gracie was having (she always has a lot, but this afternoon was just nutty), I cancelled her OT and PT appointments.

Then... her PT called (during what would have been therapy) to say that Gracie's walker is in! Woo Hoo!!!
We get to get pick it up tomorrow when we bring her in for clinic and the long-awaited, official appointment to get measured and fitted for her new wheelchair.

Progress... slowly, but surely! Woo Hoo!

Happiness is... giving yourself permission to have a less than perky day

On Monday, I woke-up grumpy. No real reason... just grumpy.
There were plenty of reasons to not be grumpy, after all, the slight fever Preston had Sunday morning was still gone, Gracie (after a rough last feeding of the evening Sunday) woke-up very happy and ready to start her day (at 3am... but happy!). We sat in her room, watching Signing Time, cuddling, giggling and catching up on some of our friends' blogs. Still, as the sun came up, I got grumpy.

I acknowledged my grumpiness to my dear husband and apologized in advance. I went through the motions of our rushed Monday morning with a little voice inside my head reminding me not to bark my answers to Preston's questions or John's, for that matter, as he was only trying to help with the Monday morning routine.
Knowing that it was my longest window of time I'd have all week, I had a list an arm's length of things I wanted to accomplish while Gracie was at school. But no matter how hard I tried, I was moving in slow motion. That just made me grumpier.

John said, "Why don't you go get your feet done?" which was entirely sweet as we have no business spending money on things like that right now. While I didn't go get a pedicure, his suggestion gave my brain the permission it needed to let go of my chore-list a bit and not put so much pressure on myself. Throughout the day, little things brought me bits of happiness and continued to help bring me out of my funk. By evening, I was fine. And, because the kids were both in bed early, John and I actually got to sit down on the couch together and watch some TV.

But today, the funk was back... like a little cloud hanging over my head as I walked around. And then, after talking with John about it, I realized that it's centered around Gracie's heart catheterization next week. It's not so much the procedure itself (although anesthesia is always nerve-rattling), but more about the fact that it's being done for to gain information for the fourth (and not last) open heart surgery that we know she's having at some point - - most likely sooner than later.

I dread the look in her eyes when she truly comprehends the fact that she's at the hospital. Most surgery and procedure days, she quite ironically has to be awoken from a peaceful sleep to get in the car. Even so, she tends to be in a really happy mood until she realizes what's happening. It's then that we get the look from her - - a look that tells us she feels we've betrayed her. It's awful and it scars my very core every single time.

I dread the waiting. I dread the pit in my stomach as I see the doctor approaching to tell us what our next steps are. I dread the process of her waking up from anesthesia. I dread the smells and the sounds of the hospital. And this time, I dread it because it's the first "big" procedure she's having done at our new hospital. We aren't with the nurses and intensivists who've known Gracie (and us) her whole life. And, as much as we've always dreaded going to the hospital, there was always a sense of comfort being surrounded by the people we've known for years.

In this "emotional preparation ritual" I go through, I also tend to analyze all she's been through. I wonder why she has to endure so much. I question so many things. I want answers as to why this diagnosis of CHARGE Syndrome and all that it entails has hit her so hard. When I'm not like "this," I lightly joke that when it comes to CHARGE, "Gracie's an overachiever." But when I am like "this," I want to know why she is so profoundly affected... or why is any child affected at all? I find myself asking questions that I know can't be answered.

I'm not trying to be melodramatic... just honest. She is not having open heart surgery next week. It's a routine outpatient procedure (though I've said it before, nothing feels "routine" when you're in the hospital with your child). Try as I might though, I can't turn all the questions and emotions off. I just have to let my mind and heart process it all so that I can move forward. I guess in some ways it's "nice" that I go through these emotions days before, so that the day of I can be a bit more rational and controlled in order to cope.

And, for the record, I wasn't grumpy all day. I was able, just like yesterday, to find little things throughout the day that made me a bit happier and lightened my load.
We ended the less than perky day by having friends over for dinner.
Taco Tuesday and good friends... definitely happy.

Happiness is... dancing with yourself

It was an "off" day in our house today.
Preston had a low grade fever and was a bit clingy in the morning.
Gracie's eyes were puffy and yucky early in the day and by 1:30 or so, she felt downright rotten.

In the morning, we played with toys inside. By the time Preston felt like going outside, Gracie was not feeling well at all and required very frequent suctioning. I tried to keep him busy, but all he wanted to do was go for a bike ride, scooter ride, play at the park... you name every activity that we can't do when his sister is sick, and that's what he wanted!

He fought me all afternoon about napping... so around 4pm, I was pulling out every trick in the bag trying to keep him awake (otherwise, he wakes up around 7pm and is up until 11 or 12... ugh!).

In an effort to keep him up and chase away the afternoon's blahs, I put on some of our favorite dance music.
This made Preston very happy... and watching him made me happy, too.



Around 5:30pm, Gracie perked up and acted like nothing was wrong. This, too, made me happy. About 15 minutes later, Preston fell asleep. Oh well... can't win 'em all!

Happiness is... walking hand in hand

This is not what I thought I'd post today.

We actually had many sources of happiness today... once again in our backyard enjoying another beautiful day. We painted with paint and with water, played ball, had a picnic on a giant beach towel, colored on the back wall with chalk, blew bubbles, squeezed fresh orange juice (for about the tenth day in a row). We breathed in more than our share of fresh air and soaked up plenty of Vitamin D... and it was all very happy.

None of it, though, as happy as this:
Tonight, with my left hand in her right hand, Gracie walked about ten feet.

That is to say, my sweet girl walked holding only one of my hands. Happiness.

Whether this is a one-time phenomenon that we won't see for a while or the budding of a new gross-motor skill, one thing is certain... it happened. It's no longer a "yet."

Happiness is... laughing at your children

I will preface this post by saying that I think this is really funny. Some might find it mean that I didn't put down the camera and help Preston give in to sleep by repositioning him. If you're one such individual... sorry... I just couldn't do it! I was laughing so hard that the camera was shaking!

This was taken on December 12th and I still chuckle every time I watch it! He hadn't napped and was trying so hard to wait for John to get home from work before going to sleep. He refused pajamas, begged to watch "Wow Wow Wubbzy" and had pulled out a bunch of books and toys. Despite all that effort to stay awake, he finally gave in... and then I put down the camera!

Happiness is... "Happy"

The first time I heard this song, Happy by Natasha Bedingfield, I thought the chorus was catchy. The next time I heard it, I paid better attention to the lyrics... and it was then that I decided I really liked it.
Check it out...

Happiness is... finding a solution

Today Gracie started taking the bus again. This made her very happy.
(The "I love you" she flashed at me and the kisses she threw as they drove away made me happy!)

In October, when we increased her to a full school day, she lost the ability to take the bus, as her health aid was no longer able to ride the bus with her. Until the district could find a solution and hire someone qualified to ride with her, I resumed driving her.

Right before Christmas break, our home district informed us that an aid (who turns out is an LVN... and very nice) was hired and she'd be able to start the week school resumed. She spent a couple of hours during three different days to get to know Gracie and her care. (I also had the opportunity to meet her a couple of times during her training... you know... because I wanted veto power!) The district was able to contract with the same bus company we used previously in the mornings (and we have our nice driver again!), but hadn't been able to find a company for the three afternoons. (I need to pick her up early on Tuesdays and Fridays to go to VitalStim.) Then, during the first week of break, I received a call that they had found a solution and the afternoons had also been covered. Yay!

Let me be clear on this... she's my daughter... I don't object to taking her to school! (And, with John's schedule, he's off three or four days during the week, so Preston didn't always have to tag along.) But, it sure was nice to gain nearly two more hours in my day as a result of not driving back and forth twice! I had more time to get things done. Our house is cleaner (yay!) and I had more time to play with Preston. He "helped" me clean, we read, played hide & seek and trains and then went outside to ride his bike and new scooter. More time for many things... Happiness.

As we played today, Preston called me over to the recliner yelling, "Look what I found, Mama!" You may recall this post nearly a year ago...

Hidden deep in the fold of the fabric that forms when the chair is reclined, were not one, but two of his (previously) prized possessions... BBs!!! Thankfully, other than being excited that he'd found them, he wasn't interested. I snagged them up, told him thank you and that he didn't need them because they're for babies and he only responded with, "I like babies." Phew! Thank goodness he didn't find them in the midst of trying to break the habit!

A solution to the long, lost BB mystery! It made me laugh and that made me happy!

Happiness is... a quiet house

Today, for the first time since December 18th, both kids were at school.
Happiness.

Today, for the first time since December 18th, the house was quiet for a few hours. Happiness.

This evening, the kids are home and once again, the house is noisy, chaotic and a mess. Happiness.

Oh... I mustn't forget...
Happiness is... the return of regular programming on TV.

Happiness is... pink

As the sun rose this morning, the most beautiful shade of pink filtered through the uncovered windows in the kitchen. As it got brighter, it looked as though the floor and walls were painted pink. I grabbed my camera, ran into the backyard and took this one shot. It doesn't do this morning's sky justice. But for a brief moment, I saw the world dripped in bubblegum pink.



Happiness is... being back at school after Christmas vacation and wearing new pink pants, new pink shoes and a new pink & brown shirt.
Gracie had a good day and was so happy to be back into her regular routine!

Happiness is... your parents taking you to Disneyland on a Monday morning and sitting in a giant, pink teacup.


Happiness is... your first taste of pink cotton candy.

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!!"