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.

Dandelion

After school on Friday, Gracie, Preston, Gracie's nurse (Nicole) and I explored a regional park just a few miles from our house. I will be posting more pics of our recent park adventures at some point... but wanted to share this now.

I just happened to have my camera on the video setting and captured this...

Foto Friday vol. 16 - Backyard OT with Mommy (part 1)

These pics were taken in late May, when it was still Spring... and not the fall-like weather we are having now!
We do a lot of fun things in the backyard after school. Most of our activities fall under the category of Mommy OT (Occupational Therapy) and there is good reason for this... these activities are Gracie's favorite and Preston enjoys them (most of them), too. It's great fun to watch her enjoy this so much, considering the major effort it took to get her interested in different tactile experiences! For the first two and a half years of her life, activities like this were taboo... and she'd touch things with her feet and forehead before wanting to touch them with her hands. And, most often it would be the back of her hand before the palm. Now... she's all about this type of fun! Woo Hoo for progress!

Another reason I keep her extra busy right after school is, of course, because Little Miss OCD thinks that it's time for a bath if I give her one second of downtime. She's stripped naked and scooting her way to the bathroom (and often causing "Potty Drama" issues) if I walk away from her! Naughty!


Can you count how many stars?



What's a little backyard fun without some quality bug watching time? He's looking at a Rollie Pollie that he watched walk across the concrete and into the grass.

What Did I Do Today?

Do you ever have one of those days when, at the end of it, you wonder where all the time went and what you really accomplished? Does your "to-do" list grow and grow with new items and yet you've not checked off anything at the top of the list? I, for one, have been having LOTS of those days lately... so I decided to take a little inventory of my day.

- I got up (no small feat, really, when you consider my "sleep" schedule and the fact that both of my kids were still sound asleep!)
- I washed my face, brushed my teeth, combed my hair (I threw it up in a claw clip at the back of my head - - a fancy alternative to the ponytail and downright dressy when compared to the ponytail and hat that I frequently sport these days.)
- I did not put on make-up (Why is that on the list of things I did, you ask? Well, because I consciously decided not to put on make-up - - in order to spare a bit of time for other things.)
- I got dressed (I guess this is a good time to share the fact that I did take a shower late Tuesday night!)
- I got Gracie up and ready for school (This is a time-consuming task that involves: drawing and administering her medication, disconnecting her feeding pump, washing her face, brushing her teeth, completing trach care, lots of suctioning, changing her diaper, getting her dressed, doing her hair, etc.)
- I woke Preston up, changed his diaper, got him a cup of "wuice" (3/4 water, 1/4 juice) and helped him put on his shoes. Jammies and shoes - - what a combo!
- I loaded two kids, a KidKart, suction bag, backpack, feeding pump and purse into the car, ran back inside to give the dog a bone and put her outside and sighed with relief when I looked at the clock in the car and saw that, by some miracle, we were on schedule.
- I drove Gracie to school, gave a quick "report" to her health aid and then drove back home (I love dropping her off. She gets so excited... one of my most favorite parts of the day is looking at her face in the rearview mirror when we pull into the drop-off circle.)
- At home, I changed another diaper, got Preston dressed, made him breakfast (which he did not eat... he didn't eat much at all today... so I also worried about him today), gave him more "wuice," washed two suction canisters and tubing, feeding tubes, medicine syringes, cleaned a trach, did the dishes, made formula for Gracie, put in a load of laundry, folded it, hung it and put it away and started another load, read two books with Preston, chased him around the whole house with the vacuum, he helped me dust, I helped him potty on the big boy toilet, put on yet another diaper, filled my water bottle, filled more "wuice," packed a snack and headed out the door to load Preston back in the car and go to the park.
- Played at the park :-)
- Loaded protesting child back into the car to go pick Gracie up from school. Offered "wuice" as a negotiating tactic, but my efforts failed. Offered previously prepared snack to up the ante... this failed. (Incidentally, he never ate said snack either.) Finally, he caved and he was buckled in.
- Spent five minutes searching for my keys which I hastily set down while in heated negotiations
- Found the keys, looked at the clock and hoped that the traffic lights would run in my favor.
- Listened to my son tell me about the red lights and green lights while driving. "Red, stop Momma! Green... Goooooooooo!"
- Learned that, no matter how much he loves it, having the window down even a few inches is too much when the passenger is two. How did I learn that, you ask? When Preston said, "Uh-oh, noddy (naughty). Shoe... window."
- Managed to remain appropriately angry (rather than flipping out about the fact that my son just threw his perfectly good Reef flip-flop out the window on a six-lane road) while scolding my son about what he'd just done. (Was glad that he fessed up, though, because I neither saw nor heard the crime occur.)
- Picked Gracie up from school. Talked to her health-aid and the school nurse about a few things, hooked Gracie up to her feeding pump and headed home... again.
- Once home, I made Preston lunch (which he didn't eat), gave Gracie back-to-back breathing treatments, made three phone calls (one of which was to confirm Gracie's appointment with the Spinal Surgeon at CHOC for June 23), raced cars down the hall with Preston, cleaned up the aftermath of "Potty Drama" when my daughter took full advantage of the time I was on the phone and stripped naked, scooted to the bathroom and was relentlessly signing "bath" and all the while marking her territory... again. Ugh.
- I put on a new diaper for Gracie, got her dressed, changed Preston, filled his cup (he drinks like a fish!), put on their shoes and mine, grabbed suction, purse, kids, and loaded them back in the car to take Gracie to therapy. Thankfully, Preston fell asleep in the car!
- Attended therapy with Gracie... 30 minutes of OT and 30 minutes of PT. Preston slept for 45 minutes during therapy and I spent the last fifteen minutes chasing him around.
- Met a parent at therapy that I have spoken with on the phone, but never met (and upon meeting, I vainly wished I'd made the decision to put on a little make-up this morning.)
- Loaded two kids and a double stroller back into the car, hooked Gracie up to her feeding pump and headed home... again.
- Unloaded kids and stuff from the car... and spent the next hour trying to keep Gracie from stripping down again. The three of us played with letters, we read, we tickled and tackled, I cut their fingernails and toenails, and then finally, gave in to Gracie's pleas for a bath.
- Gave Gracie a bath, let Preston "help" to keep him entertained and within reach. Changed her trach ties, put on a diaper, gave her a full-body massage and stretch session (we should all be so lucky!), put on her jammies and let her watch Signing Time.
- John got home right after this... it was about 5pm... 5pm to 9pm is, in my opinion, the most hectic time of day in our household. Suffice it to say that I have not been eating bon-bons on the couch since he got home. It's now 11pm, he's been in bed almost two hours, Preston is asleep, Miss Gracie is not, and thus, neither am I! I have Friendship Bread in the oven for John to take to work tomorrow, another load of laundry in the dryer, I have done dinner dishes, made more formula, given meds, washed my face, brushed my teeth, I paid a couple of bills, answered some email, read a few blogs and now I've posted this nonsense on mine!

So, even though my "to do" list is long and growing, I have stacks of mail and bills to sort through, there are still toys scattered about and by looking around the house it looks like nothing got done today, I really did get a few things done. Just a few.

Under the weather... together

Cousins Jackson and Preston

We had a great weekend planned... My brother, sister-in-law and brand new nephew were going to be in town for Friday afternoon and Saturday. The loosely-laid plan was dinner and hanging out on Friday and beach time and exploring on Saturday. Unfortunately, Miss Gracie's body had other plans. And, since Baby Jack had his first shots, he wasn't exactly himself either. With both of them under the weather, we just hung out a bit and enjoyed the time we had together at our house... together being the operative word! It was our first time meeting our sweet nephew/cousin and we are positively in love!

Uncle Brian and Bubba



Mommas and their little men



Gracie's still not feeling well now - late Monday. Her 2pm feeding on Friday didn't agree with her and she hasn't felt well ever since. She never even left her room on Saturday - - she went in on Friday night and came out late Sunday morning. She's not handling her feedings, gags when she sees the G-tube extension, has unusually excessive saliva (even with maximum medication to dry her up) and is very restless when "sleeping." We haven't been able to nail down what's wrong, we just know that she's miserable and far more comfortable with a completely empty (including Pedialyte) stomach. And, now that she has tubes in her ears again, her left ear is constantly draining her excessive saliva... which, because of the way it feels, makes her absolutely crazy.

On Friday and Saturday nights, I suctioned her every 10-15 minutes... all night. She couldn't relax, needless to say, and by Sunday afternoon, I was slurring my words and walking aimlessly around the house trying to remember why I had gotten up in the first place. John took over on Sunday night so I could get some rest, thank goodness.

On Monday, she had an appointment at Shriner's Hospital Los Angeles and even though she wasn't 100% better, she did enjoy the car ride and fresh air. Gracie was previously followed at Shriner's in Sacramento for her scoliosis and when we moved, she was transferred to the LA hospital. We spent a half an hour in line just to register (that never happened in Sac), we spent another 30 minutes waiting to be called into an exam room, we spent 55 minutes waiting in an exam room before we saw a doctor (Gracie nearly fell asleep), we spent 5 minutes with that long awaited doctor who then sent us to radiology for Xrays (something that was always done before the exam in Sacramento) and then upon returning from radiology, we were told that the doctors were going to lunch and we could wait or come back in twenty minutes... or so. What? (I get that they need to eat, too... but, really? They were standing right in front of us and saying that they'll be back. Ugh.)

So, I opted for a walk around the building until the doctors got back from the cafeteria. The nurse gave me a pager and said she'd buzz me when they were back. Finally, after another 30 minutes, we were buzzed back. The doctor and a Nurse Practitioner (both very nice) informed me that, just as I'd suspected, the curve in Gracie's spine that had been stable for a few years is no longer stable... and has now (as her PT had suspected) caused an additional problem in her pelvis, which is definitely to blame for the dynamic leg-length discrepancy we are seeing when she stands and walks. And, because there is not a spine surgeon or ICU at the LA Shriner's, they cannot provide Gracie's care.

Yep... we'd been referred there... transferred there from another Shriner's. Her file had been reviewed, we'd waited weeks for our appointment and spent over three and a half hours there. And. They. Can't. Take. Her. Case. Seriously?
It's a darn good thing that John had let me get the rest on Sunday night, because if I'd been completely sleep deprived still, I might have not been so polite. Things happen. This was, however, a completely avoidable thing and the staff at Shriner's realized that. They were incredibly apologetic. Several people spoke to me about how sorry they were. Even if they currently had a surgeon on staff, the fact that they don't have an ICU to monitor her postoperatively means that she can't be followed in Los Angeles and anyone who looked at her chart should have been able to realize that she needs an ICU. So, we will lose our referral to Shriner's (she's been a patient since she was a baby) unless we want to travel back to Sacramento for all spine/orthopedic needs - - and that's just not feasible.

They were nice enough to immediately copy her films and medical records - - not just because of the blunder - - but because of the deterioration of her previously stable curve, they feel she needs to be seen by a surgeon immediately. We have always known that she'd need surgery to correct her spine, but had hoped that with the lack of change in the curve over the last few years, it could wait until she was twelve or thirteen. It doesn't appear that this is the case, now... but we won't know more until we can meet with the surgical team at CHOC.

Within five minutes of getting in the car, Gracie was sound asleep. When we got home, I gave her a bath, gave her a feeding and then her breathing treatments. She fell back to sleep halfway through her breathing treatments and woke-up around 11:15pm. I am guessing she's up for the night now...

A priceless gift

For the kids' birthdays, our friend in CHARGE (and for life) and unbelievably talented photographer, Catherine, gave us a photo shoot.

Catherine is a gifted artist... and what she captured for us Wednesday afternoon is undeniably priceless. She posted a few of the photos to her own family blog on Friday (and more on Saturday) and sent me a link to view all 467 shots on Saturday.

John and I looked at all 467 photos Saturday evening and he is, just as I am, absolutely blown away by the gift she's given us. These aren't just photos.. they're art. They show the essence of our children... their spirits... their joy... their love for life, each other, for us and our love for them. Catherine captured that in a way that is indescribable and priceless. Their light shines through these photos (especially Miss Gracie) in a way that I have always hoped to capture, but with the clarity and artistic eye that I never could myself. The Gracie that John and I see and feel but often can't easily photograph - - her energy, her light, her life - - is shining bright in these photos.






At some point, I will share more of our favorites on our blog, but for now, feel free to have a sneak peek on her blog and also check out her photography site.

And if you're even remotely near the Southern California area, don't miss your opportunity to have Catherine capture amazing moments of your family.

Foto Friday vol. 15 - First PB & J and Sweet Slumber

There are so many schools of thought on what your kids can eat at what age.
Our old pediatrician (and several publications) said no peanut butter until age 2. So, at Preston's 2-year well-child check on Thursday, I asked our new pediatrician if he could have peanut butter. He looked at me like I was nuts (pun intended) and said, "Oh yeah, mom. He could have had it at a year." Whatever - - I give up!
(I know... Jif is not organic... but John and I love it and since he's our son, he had to have his PB & J "old school!")

And this sweetness is how our kids ended their day...

Hats Off

Two hats at Walmart: $4
Getting Gracie to actually wear them: Exhausting
Capturing these photos: Priceless

I am fairly certain I've mentioned this here before - - but as obsessive as she is, it bears obsessive repeating - - Gracie is not a fan of sunglasses or hats. That is, of course, unless she knows a camera is present. Then she glams it up for the photo op! But once the photo shoot is over, Fuhgetaboudit!

One would think that because of her severe photophobia (light sensitivity), she'd be all about hats and sunglasses. Hmmm... not so much. She will actually take her hand and put it under the frames and lens (for her sighted left eye... her right eye is completely blind) to block out the light. Other times, though, the light just doesn't bother her at all. It is one of the many quirks our girlie has that is so lovable - - but this one is also altogether frustrating!

We don't give up, though... hoping that with age, will come a little more sensibility! Ha! If that theory doesn't work for us, why on earth do we expect it to work for her?! Nevertheless, we constantly try to get her to wear sunglasses and hats. I am happy to say that, in the last few days, it seems as though the hat effort might have made a little headway...

Or... then, again...

"Poweeman, Momma!"

While I am not going to give June an official theme - - and I am not committing to posting every single day (way too stressful!) - - I am going to try to catch-up on some moments that, while sitting fresh in our memory banks, have not yet made it to the blog.

I will start with a day in late April... John was on patrol on a beat fairly close to the house... and popped in very quickly to say hello to his son, who knows Daddy is a "poweeman," but couldn't remember ever seeing him be one! I didn't even realize he'd pulled into the driveway until Preston started yelling, "Poweeman, Momma! Daddy home!"
(This was actually only the third time I've seen him in uniform... and I'd never seen him behind the wheel until that day. Hubba Hubba... if you like that sort of thing! And... since he's my husband... I do! :-) But I also think that Preston looks pretty stinkin' cute behind the wheel!)

Anyway, even though Preston is a Momma's boy when I am around, I will NEVER be as cool as Daddy!