Foto Friday vol. 4

We bought these for Gracie last weekend.

Her gait trainer is far too cumbersome and bulky for her to manage.

She really enjoys walking with these (and our backs like it better, too!)

Perhaps we shouldn't have let him watch that crazy motorcycle stunt guy on YouTube!

Little Miss Sweet Face

On Monday, as it poured rain, John took Preston to the motorcycle store and then out to lunch with Grandpa John! Preston liked the motorcycles from outside... once in the store, it was all a bit much for him and he wanted to leave. He downed a full lunch with his Daddy and Grandpa, came home and begged to go back to the motorcycle store!

I really don't mind doing dishes... it's kind of relaxing... but our temporary view makes it an even more enjoyable chore!

Potty Training In Progress!

Perhaps you remember this photo - it used to be in the sidebar? It was taken when Preston was about 14 months... when his interest in the potty started. At the time, he was all about imitating... never sat on that potty with the lid up or his pants off, but he loved to pretend he was going if one of us was going!

Around 17+ months, right around our move, he started showing more interest and telling me more often about his diaper. With the chaos of the move, I couldn't keep up with him and he lost a bit of interest.

Now... he's all about the potty! He will only use the big boy potty, though, and up until the last week or so, he liked going with Daddy much more than Mommy! Same plumbing, I guess! Plus, Daddy is just so much cooler than Mommy!

Now he's going several times a day... by his own request about half the time! And, he always signs potty when he goes! (That's the shaking fist you see in the pics, for those of you who don't know ASL!)

The world's cutest "tighty whities!"

Last 10 days... Next 10 days

In the last 10 days we:

• Visited the ENT - - Gracie still has fluid in her ears... as usual. Not infected... just fluid. Since the doctor is new to Gracie, he wanted to try one more antibiotic and then threatened putting tubes back in. I tried explaining that this is her anatomy... what's in her ears is what's in her upper airway. She's far more comfortable without the tubes and constant drainage and tolerates her bone conduction aid far better (we saw a marked improvement the very next day following her tube removal!). We'll see. This may take a lot of convincing. He also wants to have a look-see at her airway (so does her pulmonologist) so he can form his own opinions about what kind of reconstruction is still required.
• Saw GI again... even more unimpressed with him this time. I have already requested to see a different doctor next time - preferably the head of the department. At this visit, I was once again told that she needs more calories. This time, I actually rolled my eyes at him and said something to the effect of, "Look, I am a fairly intelligent person... I get that. I need you, as her doctor, to help us find out why it's so difficult to feed her... why is she in pain, why does she vomit, why does her pacemaker seem to want to jump out of her side after two ounces? Why can I pump her full calories for several days and then she hits a wall where she just can't seem to take any more for days on end? There are a million questions that I need answered and I don't need you to tell me that she needs more calories." I am quite certain he'll be thrilled not to see us again! He did order a bevy of tests: upper GI, swallow study (this is a waste...), Gastric Emptying - - she's has all of these MULTIPLE times, but everyone wants their own reports.
• Had our first visit with the new Neurologist: LOVE the new doctor! Only need to see her every four months or so... wish she was also a GI doc! She gave me a couple of referrals for Behavioral Pediatricians and Endocrinologists... I have yet to call and make those appointments.
• Saw the Pulmonologist: He ordered a sweat test to rule out Cystic Fibrosis... only because of the multiple GI issues and constant secretions. It's been mentioned a handful of times by other physicians over the last 18 months, but no one ever ordered it. Neither the doctor, or I, feel that this is a possibility, but since there are a lot of similarities with Gracie's symptoms, he would feel better ruling it out. We see him again this Thursday as a follow-up for her previous respiratory infection and to discuss release to school (once nursing is established) and release back to the therapy clinics.
• Had the SELPA (Special Education Local Plan Area) nurse come to our home to meet Gracie and discuss her medical needs for school. This was set-up due to the problems I encountered on the program tour in January. This meeting was very positive and I feel like we are finally headed in the right direction... and with support.
• Had a lengthy intake interview with the nursing agency to set-up a plan of treatment for Gracie.
• Interviewed (and selected) a day nurse to start once all insurance authorizations are in place. Cross your fingers... I truly cannot stand this process. It's exhausting to build the trust and rapport needed to have someone in your home for eight hours a day, let alone have them take care of your child.

There are positives: This will 1) allow Gracie to attend school once placement is finalized and 2) allow me to be a better mother to both of my kids. Because Gracie is not mobile and Preston is SUPER mobile, I can only take them places in the stroller or car. In other words, we've (they've) been limited on park-time (weather permitting) and any other outing that would allow each of them freedom to play. If Preston gets up to play, Gracie wants up too. I can't be in two places at once, so it's impossible to do without a second set of responsible hands. It is my hope that once a trusted nurse is in place and Gracie's in school, Preston and I can have some good, quality time together where he is not constantly waiting for his sister's needs to be met first. Playgroups, library time, a tumbling class for my little daredevil (thanks for the suggestion, Helen!) ... I have a wish list that's growing rapidly!

Since Gracie was born, we've constantly had people in and out of our home for therapy, school, etc. Once she required nursing care, then all privacy went away. Granted, we were very lucky to have had a wonderful nurse with us for over 3 1/2 years who truly loved Gracie and was always so respectful of our home, privacy, etc, but it wasn't easy to constantly feel as though our lives were on display. It's been a nice break these last several months to have our space be our own - - it's something we've not known for almost six years. It is time, however, to have that help again... Gracie needs it, Preston needs it and I (yes, I'll admit it) need it, too. The new nurse will start part-time and then if it works out, we'll have her full-time.

In the next 10 days:

• Pulmonology
• Pacemaker Check
• Cardiology
• ENT
• Intake interview with our new Regional Center worker
• New nurse should be starting
• Gracie's home-hospital teacher should finally be starting (as well as therapy evals for school)
• NANA and PAPA will visit!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Papa is on leave from his service in Afghanistan... we are so excited to see him.

Happy Valentine's Day!

Happy (Re)Birthday, Sophie!

Ten years ago, Valentine's Day, we brought you home from the Humane Society Adoption Center. And while technically we rescued you, you've rescued us over and over throughout the years. You've loved us, cuddled, let us cry on you as life has smacked us with challenges. You've rolled with the punches of our life and adapted from a two-walk-a-day lifestyle before Gracie and Preston, to a now two or three walks a week kind of life. You continually forgive us for the backseat you can easily take nowadays. You've survived cancer - three times. You, just as the human children in this family, have truly been a miracle to our family... "man's best friend" defined. You love us unconditionally... and you even love your little tormentor, Bubba! And, though you are getting on in years (somewhere around 12) and can be a little slower (still faster than me!) and more easily irritated (you've earned it!), you still have a puppy-like zest for playtime and don't hesitate to show-off your multiple bag-o-tricks when asked.
We love you! Happy Birthday, Sophie!
aka Moomer, Goose

Foto Friday vol. 3 - The loudest quiet

Your voice may be silent
but you speak volumes

Your signs may be limited to an arm's length list
but your eyes and soul bear the depth of your vocabulary

You work tirelessly for each expressive sign you learn
and yet your expression of love is effortless

Your love and your life, my sweet girl, is anything but silent
it is the loudest quiet I know

On Wednesday, I spent an obscene amount of time trying to iron out Gracie's Medi-Cal transfer from our old county to the new one (this has turned out to be a nightmare). During the end of a phonecall in the late afternoon, the kids played quietly and I stepped into the kitchen to lean on the counter and make some notes. Suddenly, I noticed how quiet my house was... and I peeked over the counter to find Preston fast asleep. He just dropped right where they were playing! He was not alone in his slumber, as his sister was lovingly playing with him... and he didn't have a clue! I, of course, did what I always do and grabbed my camera. I took video and pictures and knew immediately that it would be part of "Foto Friday." What I didn't know is how it would end up taking on a little life of it's own.

The last five nights (six counting Thursday!) have been sleepless in this house. Miss Gracie has been on a night party kick... waking somewhere around 1am and wanting to play until 5 or 6am. She does go back to sleep for a little nap, JUST as her sweet brother is waking up. Loads of fun!

Sometimes - - and Wednesday was one such occasion - - I will bring the laptop into her room and we will watch slideshows of our pictures. And while I'd much rather be sleeping, it is so much fun for both of us. As we watched a slideshow of older pics late Wednesday (actually early Thursday), I couldn't help but notice the thread that weaves so many images together. It's the look of love spoken through Gracie's heart, eyes and soul.

The week in review... thru photos

When Miss Gracie's tooth came out on Thursday night, there was no way that anything other than that news was going to be the "Foto Friday" post!

Here's what I had originally put together. All of the pics were taken between last Sunday and Thursday.

So sweet and innocent... looking!

Gracie getting in her daily "bar & bench" workout.

This is usually about a 45 - 60 minute routine now!

These "feet" were photographed on SuperBowl Sunday.

The weather has since changed to dark grey skies and pouring rain.

(Big apologies to those of you buried in snow right now...

I'm guessing you don't appreciate this picture!)

This breaks my heart every single day.

It is a great language building opportunity, though!

He has known how to sign and say "Daddy work" and "Daddy home" for quite a while now.

Such a big, independent girl!

Adult supervision is most definitely required, much to her dismay!

Foto Friday vol. 2

It's been loose a while now and last week Gracie finally started noticing that her tongue could play with her tooth! She was wiggling it, trying to gnaw on things to make it move... you get the idea! It's always been a great fear of ours that she'll monkey with it when we are least expecting it and then, poof, it's lodged in her airway. So, Thursday night, February 5th, Daddy Dentist took matters in his own hands and dabbed on a little Orajel, grasped her tooth with a 2x2 gauze and after a slight tug that didn't even phase her, he pulled it out and she laughed. Now her tongue has a little gap to play with and our little girl has a "bigger girl" grin!

A Random Act of (Inherent) Kindness

Each day... no matter what is happening... miracles occur all around each of us. Some are large, some are so tiny they may last only a second - - but they are there - - you just have to be open to them, always watching, listening and feeling.

Today's miracle was easy to spot. It was the inherent kindness of my son.

The kids were playing outside - - Gracie was rocking on her rocking board while happily signing to herself and Preston was running around doing "boy" things... pointing at bugs, digging in the dirt, throwing everything he could get his hands on - - and I, well, I must admit that I was sitting nearby, taking a moment to bask in the February sunshine while having a quick chat on the phone with my mom.

That's when it happened.

Preston picked a "flower" behind the chair where I sat (it was actually a dandelion in our weeds lawn) and walked over to Gracie to give it to her. She (rather impolitely) declined - - normally, she does not turn down a flower, but she was really into her little rocking routine and didn't appreciate the interruption. He tried again, approaching Sophie (he only calls her "Dog") and she, too, declined his gesture. So sweet... so kind... so Preston.

Deflated and irritated by total rejection, he then threw down the flower and took a swat (and missed) the dog. And then, just like that, his random act of kindness was over and the (almost) two year-old boy returned with full force. So quick tempered... so busy... so Preston.

Have you seen this BB?

MISSING:

"BB"

AKAs:

"Binky"

"B"

and in a frantic search

"Beeeeeeeeeee Beeeeeeeeeeee"

LAST SEEN:

Tuesday, January 27, 2009

at approximately 2:45 pm

when carelessly thrown in a fit

of "terrible two" anger.

IF SPOTTED:

Do not return to owner.

Please discard in nearest trash receptacle.

OWNER'S WISHES:

Owner wants all BBs returned unharmed, no questions asked.

Please do not cooperate with owner.

Owner was previously distraught, calling out for BB dozens of times throughout the day. The owner has now begun accepting that BB is gone because he threw it (and another BB Backup earlier in the same day) when he was naughty and mad. He has been reminded how important it is to only throw balls and not show his anger by throwing (or hitting). In addition, all other "Backup BB friends" that lived in the owner's house are missing (or have been "taken care of") and his mommy would like to keep it that way. (Owner's mommy hopes that if there is a lingering BB Backup somewhere in the house, she finds it before the owner does!)

Owner has turned his attention (affection and obsession) to a small, talking stuffed toy, "Lambchop," who once belonged to his sister. He has been known to walk around loving on Lambchop, giving her hugs, kisses and patting her back. Owner's mommy sincerely hopes that Lambchop doesn't go missing as there is no backup plan for her!

IF "BB" IS FOUND,

PLEASE DO NOT COOPERATE WITH OWNER.

"Courage Is"

I have been a fan of this song by The Strange Familiar for a short while now. I first heard it last summer on a Sacramento radio and when I did, I couldn't get it out of my head. Whether the music style speaks to your taste or not, I am confident the lyrics and message within will.

In a way, it reminds me of a quote (I think I recall it correctly!) from the (less than stellar, but not horrible) movie "Bounce,"

"It's not brave if you're not scared."

That quote always stuck with me... and when I am feeling really uncertain, scared or afraid, I remind myself that I am also, by facing those fears and pressing forward, being brave and courageous.

(If you're a fan of "The Biggest Loser," this song may sound familiar to you - - it played on the season premiere in January. I also must mention that The Strange Familiar, unlike many bands these days, sounds just as good - - if not better - - live.)

Happy Listening...

Take all my vicious words and turn them into something good
Take all my preconceptions and let the truth be understood
Take all my prized possessions and leave only what I need
Take all my pieces of doubt and let me be what's underneath

Courage is when you're afraid but you keep on moving anyway
Courage is when you're in pain but you keep on living anyway

We all have excuses why living in fear something in us dies
Like a bird with broken wings, its not how high he flies but the song he sings

Courage is when you're afraid but you keep on moving anyway
Courage is when you're in pain but you keep on living anyway
keep on living anyway
keep on living anyway

It's not how many times you've been knocked down
It's how many times you get back up

Courage is when you've lost your way but you find your strength anyway
Courage is when you're afraid
Courage is when it all seems grey
Courage is when you make a change and you keep on living anyway

You keep on moving anyway
You keep on giving anyway
You keep on loving anyway