Four weeks worth of Foto Friday - The Long Lost Flock

Returning after yet another extended break in blogging. Super busy - - as usual - - but more tired and foggy brained. We have a lot of "stuff" on our minds and hearts (on top of the usual - - and too much to delve into here) and it has been making the days seem even longer and, thus, the fatigue that is routine somehow feels much heavier.

I should probably start where I left off - - and that was when everyone was sick. It turned around quickly for Preston. For Gracie, it took some weird twists and turns, leaving me to wonder if she had her own "ick" vs. the virus that the rest of us shared. And, to add some "excitement" to our days, she has been having (about every two weeks) a fever that lasts a handful of hours and then is just gone... poof. Each time, the fever goes up a bit and this past Saturday she had one that was as high as 104.4 (her baseline is just under 100) and made her very itchy - - not surprising, due to the fact that she was burning up. Then, around 2:30 in the morning, it broke completely and she was back to normal. We aren't certain of the cause, but my gut is telling me that it's a neurological thing, rather than an infection. Needless to say we are taking note of everything to share with the doctors. Anyway, she's back to "normal" with the exception of the fever thing and has had some really good days this week.

I finally went to the doctor for my persistent cough and was given an inhaler and told to take allergy meds again. So far, not much help. The cough is an annoying tickle that makes me grunt and groan if I try to stifle it... very attractive. Otherwise, I feel fine. As for John, he was the luckiest of all of us and was spared the horrible ick, only having gotten a very mild version. At least someone was spared!

Gracie's summer school ended on Wednesday - - she doesn't "get" it yet that she won't be going back to school for a month. I am in panic mode trying to think of ways to spice up my "Mommy School" routine, as she had grown quite bored with me by the time she finally started school here in April! Thankfully, her wonderful aid sent home some of her materials so that I can keep up with some of the things she's been working on. And, even though I am completely bummed that summer school is over (mostly because it's so hard to help Gracie understand why she's not going when she's begging to go in the mornings!), I am so grateful that during this insane economy and horrible budget crisis, there was a five-week summer program for her to attend four days a week for just under 4 hours. Very grateful.

The bus situation eventually worked out, thanks to the dedication of her aid and the RN at the school. But we aren't sure what will happen in the fall. Both individuals, sadly... very sadly... might not be working in the same capacity next year due to budget cuts. If this is the case, especially with her aid, then the bus will not be an option until I am comfortable (and Gracie's comfortable) with her new aid. In the meantime, I am trying not to think about it... as losing her health aid (who also serves as her instructional aid and who has dedicated herself to taking more ASL classes aside from what the school provides her...) would be tragic at this juncture. She has earned Gracie's trust and they have built a really good rapport. Her aid understands her, can read her, respects her health issues and her chronic discomfort, yet pushes her whenever possible. And, she's not afraid to ask me questions to make sure she's picking up on Gracie's cues correctly. Losing her would be tragic... a huge adjustment... like taking steps backward and starting the transition to school all over again.

We have had some fun amidst the "heavy fog" I mentioned before, and that is what I'll share now as I ease back into bloggerland and catch up on four weeks of missed "Foto Fridays!"

Nana and Papa's Visit
Nana and Papa visited us the second week of July.
Papa is finally home from his year-long service in Afghanistan.
(It's hard to see in the dark picture, but the kids colored on the banner we hung for Papa!)
It was wonderful seeing them even though we were all still feeling a bit funky.
We just hung out - - had breakfast at the beach and let Preston play while Gracie was at school, they went to Gracie's therapy to watch the "walking wonder" in person, they went to TOTnastics with Preston to watch the "climbing, somersaulting, head standing, jumping, balancing wonder," they went on walks with us in the evenings. It was so nice to just "be" with them.
(As a side note, Preston actually runs the entire "walk" most nights... the longest was 1 1/4 miles!!! I clocked it the next day! I don't have that kind of stamina!)

One day after Gracie got home from school, Papa took us on the Joint Forces Training Base so the kids could look at the old helicopters. Preston LOVED every minute of that!

Preston doin' his thing at TOTnastics

Gracie showing off her triceps! Ha!
She's actually "sneaking" her way back down from sitting up!

Chop Those Locks
The kids got haircuts again... Preston twice. John took him to a butcher barber, who was supposed to give him a trim in the front and shorten the back a bit. Instead, he chopped-off his hair - - DRY! It was so uneven and horrible... and I will admit, without shame, that I did shed a little mama-tear over it. Granted, I know it's just hair, but I also knew that if Preston had gotten ahold of the scissors himself, he'd have done a better job! Anyway, I let it grow out for two weeks, and then Nicole (Gracie's nurse on Fridays) helped me take both kids in for proper cuts.
And, just like I shared back in the spring, my girl is such a girl! She loved every minute of being pampered! Nicole and I were cracking up at her!

Sigh... I just adore her expression as she checks herself out in the mirror!

Little Boy of Summer


Snail Mail - A parcel of fun from dear friends
My long-time, dear friend, Becky, and her two adorable daughters, Abby and Emma, sent Gracie and Preston a package of fun. They loved opening it... and they really loved what they found inside! :-)
For Gracie, Glitter Lava... slimy, squishy and oh-so-much fun!
For Preston, a Curious George coloring book and Caillou computer game!
And, special, sweet notes from Auntie Becky! :-) Thank you!!!

Gracie did share with Preston, although he didn't dive right in the way she did!
It's hard to believe that just last year we had an entire goal written for this kiddo to tolerate five novel sensory tasks!

He loves coloring - - for about five minutes!
He's all about sharpening the crayons or organizing them in the box!
He can't decide if he's a lefty or righty! I don't care either way, but I wish he'd figure out his preference soon! He bats, throws and eats better lefty... we'll see!

Ugh...

This is what our house looks like so far today... ugh. Lights out, blinds drawn shut to keep out the sunshine, thermometer, stethoscope and nebulizer working overtime.
I guess it was inevitable. There is something running rampant in the community... and since I am still nursing a relentless cough from two weeks ago and since John got a mild version of my "ick," I guess it's no wonder that the kids finally gave in and got it full force.

He: 100.2 (Tylenol on board) with a stuffy nose, cough that sounds like a small seal and clingy (and cuddly... I like that part) as can be. Saw the doctor yesterday and have antibiotics on stand-by if he gets worse. Otherwise, lots of rest, fluids and nose blowing. (Suctioning with Gracie's machine, actually. Thankfully, he doesn't mind this and recognizes the benefits. He's even tried to do it himself!)

She: 101.4 (Tylenol on board) with a stuffy nose, cough and stuffy trach, still raging ear infection and a visit to the doctor in store. She's not yet cuddly, rather wanting her space and sleeping on and off (since she didn't do that last night or the night before). I've given regular breathing treatments since yesterday after school to keep her lungs nice and open... but she probably needs an antibiotic sooner than later.

Switch Hitter

Attention MLB Recruiters (National League):
He's a southpaw who can switch hit!
Post your offer for the 2030 season (his momma is going to make him finish college first) under comments and if we are interested, we'll have our people call your people! HA!!!!

(Video taken June 13, 2009)

Backyard OT with Mommy (part 2)

Oh... the simple pleasures of a bowl of cornstarch and water! Gracie could mess with this for an entire afternoon... and I could easily watch her! These were taken in May, but we do this about every ten days or so... it never gets old!

She loves getting goopy (Preston does not! That's his hand holding the spoon... and that's as close as he got!) and we find all kinds of ways to make it more entertaining - - as well as challenging from a fine motor perspective. I will make the mixture really firm at the bottom of the bowl and then add water. She ends up sticking her little hands into makeshift quicksand and gets her fingers stuck at the bottom. It's a lot of work for her to pull her fingers free - - and this is good for strengthening, plus it cracks her up! Using a spoons to stir and scoop - - and adding in miscellaneous objects/ingredients) also provide great fun along with strengthening hands, arms and fingers... and coordination.

Fun... with a purpose!
(A two-fold purpose, actually! Good OT... and good OCD management! She can't strip naked when her hands are immersed in this mess!)

The Fourth... Ouchies and Cupcakes

He's okay.
I, on the other hand, am trying to recover.
Preston and I went outside in the morning to do our normal "doggie poopie pick-up" in the back yard. He ran to the grass to start taking inventory (he likes to tell me where it all is...) and I stopped on the far end of the patio to fight a battle with a spider and it's web. Using the big broom as my weapon, I didn't hear Preston come up right behind me. I took a big sweep backwards right as he ran up to me... and wham... impact.

The most sickening feeling overcame my stomach. The sound of the broom handle and his eye meeting along with the sound of his screams and sight of him shaking in pain will take a long time to leave my mind. He's okay... I talked to the advice nurse at the hospital and am doing and watching for all the right things. He is seeing normally... and we will continue to monitor that carefully for a while. He took a mighty blow and will surely have quite a shiner to show for it. My mommy heart is scarred, though, for being the cause of this accident. Not so happy morning of the fourth.


Little Miss was not dressed for very long today. She has a raging ear infection in her left ear and spent half of the afternoon asleep in a diaper under the ceiling fan. But, while she was dressed and awake, I took these pics! The hat that Gracie's wearing was a project at school, as are the decorations I taped to the mirror behind the kids.
(Thanks, again, for the adorable outfit, Clayton Family!)

How to eat a cupcake...and how to recover from a battle with a broomstick handle.

Thankfully, Gracie rallied a bit in the evening and when John got home from work we all went for a walk. We ended up meeting some very nice people a few streets away and they invited us to watch fireworks. It was really a nice, unexpected ending to a rather dreary (but for the cupcakes!) Fourth of July. Preston befriended a sweet nine year-old who was so patient with him and Gracie was very content sitting in the stroller (out of the smoke line), signing "colors" and "lights" over and over.

Foto Friday vol. 19

Sigh... This was Monday morning... Gracie's first day of summer school and first bus ride... and much harder for Mommy than her first day of school without me observing. Much harder.

Having Gracie take the bus was not an easy decision. But the fact is, with me taking her and picking her up each day, Preston and I were spending almost two hours in the car just for that purpose. Hardly fair to him... and with a list of "to-do's" as long as mine, not exactly the most effective use of my time. Since the summer school campus is a bit farther than her regular school, summer seemed like a good time to give the bus a trial run.

Her health aid rides with her, so she is with a trusted person and in good hands. We've had a full week on the bus now (no school on Fridays) and I am not yet sold on the idea. It could be because this is the first week where school has finally seen some of the "real" Gracie issues with feedings and excessive secretions. Their "honeymoon period" is over and that has been a little more stressful for all of us. Gracie does appear to like the bus and her aid says she does fine. It's me... I am not so fond of the rush to give report on her status in the morning and receive a report on how her day went. It feels chaotic and every morning I feel like I've forgotten to do something important. Plus, I am missing what had been my favorite part of the day - - watching her face through the rear view mirror as we pulled into the drop-off circle and seeing her light up with excitement.

I will give it time. It has, after all, only been a week and we are all trying to iron out the kinks! The great part about the bus is that Preston is getting a lot more quality time with me during the morning.

Thanks for the great idea, Hannah! :-)
This kept Preston busy for a long time! He loved it!
Although, you can see that his favorite brush is the broom! He likes clearing his canvas!

As I cleared the table after dinner that same night, I looked outside and saw this sweetness... they don't even know I took this!

Pigtails and Art... Body Art, that is!
Check out my girl coloring her arm!
This is one of her favorite activities!

"Momma... find me!" I hear Preston calling from his room.
"Okay, Bubby! Here I come!"
I walked in his room, saw him in his toy box, grabbed my camera and took these hurried and blurry (but fun!) pictures of him in his new hide and seek spot!

Preston with his Auntie NuNu (John's sister, Kristen) at the beach playground.
She came to see the kids (and us) this week!

Foto Friday vol. 18 - Gracie's Climb

I mentioned at the beginning of the month that I was going to try and play a little "blog catch-up." I have not been as successful at this as I'd hoped. But that only emphasizes what a difference a few weeks can make and it's part of what makes this post so special to me. It shows real progress in a very short period of time... and that is priceless.

The following video shows what Gracie was working on in OT & PT at the end of May and early June. She's been using a Reverse Kaye Walker with additional support at her hips (from her therapists, Laural and Erika) and has been using a super fun car to wheel around the unit. The car is good strength building and practice for the wheelchair we are working on getting her. She has outgrown the KidKart and she needs something that will give her more independence. While the ultimate goal is walking, the fact is that it will take a long time for her to build her endurance for continuous walking.

This is a little footage of what I was so excited to post a few weeks ago...

The first time she used the car, I cried... the expression of joy on her face was unforgettable. So joyful... so free...

Since that footage was taken, Gracie's PT and OT came to our house for a home visit. This gave us a chance to show them what kinds of things she does with us (and on her own) at home. She's had a gait trainer for years, but has never been very fond of it for many reasons. She loves her bar... and will cruise it for an hour. She can get her little body into all kinds of "Gracie Yoga" positions, she stands at the couch, she gets up and down the little slide on the play structure, she shimmies herself up furniture, she rides her little "Red Roddy Pony"... and so much more. Showing them the things she does in her own environment gave them a better picture of her safety awareness and balance... and so the next time we went into clinic, they pushed her even more.

And this video is what I am even more excited to post... it was taken last Thursday (the 18th) at therapy. I took fifteen straight minutes of this glorious display of strength, budding independence and relentless determination!

Then on the 25th, while much of the world was reeling from the day's news, I was witnessing my daughter's impressive display of endurance - - nearly 45 straight minutes of standing and walking with the walker!
Unbelievable

what can happen in a few short weeks.

Numbers

1: The number of teeth Gracie has lost (or that was pulled because it was super loose!) this week.

4: The number of new(ish) phrases that Preston is saying that really crack me up. These are the results of watching the NBA playoffs, the US Open and hitting balls off his T in the backyard.
"Yay, made it! Right on!" (Said with two enthusiastic thumbs up!)
"Awww, almost! Try again!"
"Missed it! No hoop"
"Uh-oh, I'll get it, Mama!"

17: The number of years since I have felt this bad from a cold... I have a wicked sore throat, deep cough, low grade fever and scratchy man-like voice right now. I just hope that no one else in the house gets it.

23: The number of times (from her waking until she finally went to sleep late at night) I re-diapered and dressed my daughter on Monday because she insists on taking off everything. (And, no, I am not exaggerating.)
Also the number of times I felt like I was going to have a nervous breakdown.

6: The number of times I cleaned up "potty drama" due to the fact that my little exhibitionist feels the need to go the minute she's diaperless. Ugh.

3: The number of diaper pins now holding her shirt to her shorts so that she can't randomly undress.

4: The number of times she has, so far, outsmarted the pin idea and pulled her arms through her shirt and then pulled (stretched!) the neck of her shirt down to her waist and shimmied out of both shirt and shorts! Can't ever accuse her of being undetermined.

14: The number of meds (not number of doses) that Gracie is currently on. Good grief.

2: The average number of baths that Gracie gets in a day.
I joke about her being Miss OCD and fixating on a bath, but the truth is this has become a huge issue. She absolutely insists on getting in the tub. Once she's in, even if for just five minutes, she's fine after, but then an hour or two later starts asking again. We have decided (for now) to give in to the request if she truly cannot be redirected. (I have re-directed her right now by letting her lay across my lap while I type. She is scrolling through a slideshow on my cell phone!) Anyway, my theory is she is getting input from the water that she can't get from other types of stimulus, like brushing or joint compressions. I'll probably never know... but will definitely be bringing it up at our appointment with the Behavioral Pediatrician this summer... along with all the other obsessive behaviors that are getting worse by the day. (I also wonder if her new meds to help with her pain association during feedings are contributing to her increased OCD and anxiety.)

10 or 11: The number (age in years) that we should expect Gracie to need spine surgery. YAY!!! Great news! We saw the new orthopaedist on Tuesday (Hannah, he totally passes the coffee test!) and he feels that despite the severity of her curve and the obliquity in her pelvis when she stands and walks, Gracie doesn't need surgical intervention at this time (provided that everything progresses slowly and her lung capacity is not further compromised). He also stated that she doesn't need any kind of bracing for her scoliosis or her legs, as he feels that more than benefit her, these things would inhibit her muscle development and make her more apt to give-up working so hard on walking and standing... and she is, indeed, working hard!

3: The number of "catch-up posts" that I've started and not yet published - - one of which is about all of Gracie's hard work at therapy! Despite all of the obsessive behavior, there is a lot of good happening, and that is why I haven't yet become certifiable!

Gracie's School Projects - Spring

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...

Father's Day gifts for John

These are the projects Gracie did between starting her new school at the end of April through the end of school mid-June. The booklet of pictures (top left of the first collage) is something her teacher put together to show the things the kids did during their year. With under two months in the program, Gracie's book is small... but so cute! The one project that is left out here is the sunglasses case that was made as a Mother's Day gift. It's being used currently and is in the center console of my car!

Foto Friday vol. 17: 6-19-1999

Ten years ago, today, John and I got married... ten years.

Just the other day, he looked at me in the kitchen and said, "Ten years has really flown by." It's true... it really has... and that is ironic given that so much has happened and changed - - so much - - since that beautiful day ten years ago.

We stood together and exchanged our vows, vows in which we wholeheartedly believed, and yet the depths of which we did not truly understand until life started throwing curve balls and testing every word - - repeatedly.

Today we celebrate the accomplishment of working through the curves - - with our love deeper, our selves stronger, our vows clearer and our humor intact - - as we continue life's dance... together.



Happy Tenth Anniversary, John. I love you and our life... with all its curves.