Powering Through

Missing school due to nursing issues didn't stop Miss Gracie from giving her all at her first day back at therapy since December!  True to her character, this girl powered through even though it was super tough.  She is a rockstar!

It was, by no means, easy.  Nor was it pretty.  She compensated for the pain and stiffness by dragging her feet along behind her.  But she did it.  She powered through and didn't quit.  And, when it was over, she was super happy to be done and I, as always, was proud and awestruck.

So far, SO GREAT!!!

(No... I don't mean keeping up with my back-blogging! I have determined that uploading photos is still causing my laptop to crash, so it's going to be a very slow process in playing catch-up here, but I will do it, as this is the only form of journaling/scrapbooking I do to create memory keepsakes for our family.
Now... onto the photo-less GREAT...!!!)

Last year, the summer was kicked off with Gracie's first (of five) admissions to the hospital - - the start of what I call "the summer of horror."  In fact, Gracie missed the last two days of school.

THIS year, she attended the entire last week of school and... AND... to kick off the first week of vacation, she has been a busy girl! A great weekend with lots of self-initiated physical activity, including lots of random attempts to pull to a stand (when I'm not looking... scary) and take very unbalanced steps (also scary) between things (forgetting to use her hands... scarier) which peaked with her cruising the hallway all by herself.

And then there was Monday...
We have made some changes to her PT regimen and are giving her more of a boot-camp style session. Actual exercises, with repetitions and onto the next activity - - all of this to see if we can add strength and keep her interested and motivated.  So, on Monday, her PT jumped right in. Gracie used her walker and walked from OT over to PT, got on the Total Gym (yes... you read that right... think Chuck Norris and Christie Brinkley's infomerical!) and proceeded to do some inclined leg presses.  She needed some help remembering the muscle motion for the first five reps... then did 15 with no help at all!  She took a break and did another ten with some assistance toward the end.  Then she did reps of wall squats (with balance assistance and movement queues) with a squishy ball between her knees. Then she walked over to the tricycle. (Gracie has a trike at home that she "rides" and has had it for years. She can pedal, steer, etc., but often only does it in short spurts. School purchased one for her to use at recess, etc., but it has been reported that she doesn't really show any interest, which has always perplexed me.) Anyway, back to Monday. Gracie got onto the trike (with help, of course) and proceeded to pedal her little self all the way around the therapy unit!!!  She corrected her body position whenever necessary and kept those feet on the pedals the entire time. If she slipped, she got herself back into position and kept pedalling!  Then, after riding, she walked all the way out to her wheelchair.  Needless to say, I was squealing with delight! Laural had intended to add a goal about riding the trike... instead it's going to be the reward! My girl blew-up PT on Monday and I was so proud! (Might I add that all of this was following a lengthy Neurology appointment and a half-hour of OT!!!)

Not to be outdone... Tuesday was Preston's day! 
(Last year, because of the summer of horror, Preston's swim lessons were canceled.  With all that was going on with Gracie, we just couldn't make it happen logistically.  The summer before also had logistical challenges, so he just started last week for the very first time.)

Tuesday morning, Preston had his third swim lesson.  When he started last week (yes, there are pics... but sadly, I can't get them on here!), it went great.  John and I both got to watch and it was so much fun seeing our fearless little man step up to the challenge.  Monday was his second lesson and it was a small disaster, riddled with tears, clinginess and borderline hysterics... what we would have expected on the first lesson.  He rallied for the middle of the session, but I was fearful that our inability to get him started younger was going to cause permanent damage.  Tuesday, daddy took him and he rocked it!   He came running through the front door with his Level 1 bracelet and said, "Mommy, I passed Level 1 and got three rings off the stairs with my whole head in the water!"  Phew!!!  I was so proud of him!

Then, they took off for the park.  John was going to run there and Preston ride his scooter, or so I thought.  Preston rode his bike... all the way to the park and all the way home... without training wheels!!!  At the age of four years, one month and five days, he's officially without training wheels on a 14-inch bike.  Such a big day for him!  That evening, we went for a walk as a family and Preston rode his bike... through gravel and big rocks, over grass, over small curbs... he tried skidding... he took his hands off the handlebars for a split second... and I... I kept checking my pulse!  I just can't believe how big my little man is.  Sigh. 

So far, this summer is SO GREAT!
Can't wait to see what my kids do next!!!

Pimp My Ride



Phase One of Pimping Gracie's Ride - - her newly embroidered canopy!
Miss Thing thought she was all that and a bag of chips cruising the mall Friday!

 Because Gracie's chair is "uber custom" and has parts from various manufacturers, we were limited on our choices of colors to make it cute and girlie.  The options for her frame were either too dingy or way too neon for our liking (especially knowing we'd have to live with it for many years to come) and there are so many types of fabrics involved in her seating and canopy that coordinating colors was impossible.

Thankfully, Gracie's awesome PT, Laural, had a plan (and a kind heart, selfless spirit and a mother-in-law with an embroidery machine!) to help spruce up the canopy.   We picked up the panels at therapy last Wednesday and every single place we've been since then, I've had people come up to me and say the sweetest things about her customized canopy.  Gracie thinks it's pretty snazzy, too... she keeps pulling on the front flap and trying to look at it!  Stay tuned for Phase Two!

Foto "Friday" vol. 33 - Busy & Fun Week

Monday


After I dropped Gracie off at school, John and I took Preston to Disneyland with our neighbor, Addison, and her mommy, Rachel. We have lived here a year and have not yet gone - - both because of John's previously insane schedule and because we were so hesitant to take Gracie and have her be too stressed for any of us to enjoy it. I had a tremendous amount of guilt about going without her, but am so glad we did. It was really hot, even in November, and we spent a considerable amount of time in line for tickets.
(We bit the bullet and bought passes, realizing that we can take several short trips as often as we want and then there isn't pressure if one (or both) of the kids isn't having a great time. We can go on however many rides we can fit in without the pressure of fitting everything in. Plus, once we get the lay of the land, we will be able to carefully plan Gracie's first trip with shade, lines, crowd control and ride order all accounted for.)


Addison and Rachel were so patient waiting for us; Addison is a pro at waiting in line as she's been to Disneyland a bazillion times! Now that we have passes, Preston and I can go with them more often. It will be so fun!


When we left Disneyland, we picked Gracie up from school and then she had OT and PT. Last Monday (the 9th), she got to demo the type of wheelchair we have in mind for her. (There's been some questions regarding her strength and whether or not she'd be able to propel a chair on her own, thus a new chair had been put on hold until she could prove she was ready for it.)
On her first try, she got in, propelled, turned, etc. It was remarkable how well she did and she taught a big lesson about never underestimating her! This week, I was armed with my camera to capture her in action. She did great again, but rather than turn herself with the wheels, she discovered she could "bounce" off the walls using her feet! At first we thought she was having trouble steering, but quickly realized that this new method of movement was completely intentional. Leave it to Miss Gracie to add her own special touches to mobility!




Tuesday
This was a crazy day! Gracie's Triennial IEP was in the morning and lasted just short of her entire school day. As soon as school was out, I took her to Vital Stim . (Yep... she's back at therapy... more on that to follow soon!)

That night, I went out... for the first time in over a year... with fellow Mommy in CHARGE, Catherine, to celebrate her birthday. Upon seeing me in a dress and heels, Preston said, "Mama, what you wearing? Take off you shoes, Mama." His comments cracked me up... he has never seen me in a dress and heels... it is a very rare occasion! (My "lack of glam" also evidenced by my fading farmer tan!)



Wednesday
I took Gracie to school, then Vital Stim (normally on Fridays) and then OT & PT. At the end of PT, Gracie got very upset because she saw the wheelchair she'd used on Monday (and the previous Monday) and walked (with my assistance) toward it. She signed "up" and I had to tell her it was time to go. She got furious, started to cry and when I picked her up, she pointed to the chair over and over. I felt so bad and so happy all at the same time - - bad because she couldn't use it and it was time for us to leave; happy because she clearly loves the freedom that the chair gives her. I am so excited for this new chapter in her growth - - so much freedom and control heading your way, sweet girl. (Now we're all in big trouble! Ha!)

When Gracie and I got home, John was standing in the hallway in front of the bathroom door. He quietly informed me that Preston was on the potty about to go "number two" all by himself. And... he did it! Yay! He told John he had to go, took off his pants and diaper, put the potty seat on the toilet and climbed up all on his own! Woo Hoo!!! A huge step in the right direction!

Thursday
John took Gracie to school and Preston "helped" him. I stayed home preparing for the carpet cleaners to come (very badly needed, by the way!). Once they finished, I took Preston for a haircut. While we waited, he informed me he had to go potty. And... he did BOTH on the potty there. I was floored and so proud of him. After his cut, we picked Gracie up from school and returned home to play in front of the house (as I was trying to keep them off the carpets as long as possible!).

We blew up this cool tube that my mom got the kids last year. We thought Gracie would love it (and I think she will, eventually), but on this particular day, she wasn't having any part of it! She only wanted to sit in the stroller and play with the tennis racquet and ball.



Preston, on the other hand, loved the tube!

Friday
I took Gracie to school, then Preston, then came home, cleaned a bit, went to the store, made Pumpkin Marble Cheesecake, cleaned some more, got myself cleaned up, picked Gracie up, brought her home, fed her, changed her and then went to Preston's Preschool Thanksgiving Feast. It was so cute to see the kids together and get the chance to chat with some of the other parents. By the end of the evening, all three of us were tired!

Foto Friday vol. 26

Gracie's schedule is busy insanely hectic. Four days a week she has therapy of some type after school (OT, PT, Vital Stim) and then usually about once every two or three weeks, we are also squeezing in a doctor's appointment. The appointments themselves, plus the travel time, often have us arriving home near 6pm. While it is a complete drag that John works every single weekend, it is nice that on many of our therapy afternoons, he's now able to be with Preston and spare our little man being dragged to endless appointments with his sister.

Here's a peek at what it often looks like for the girls...



And the boys...

Preston loves hanging with his Daddy! The other day he came home to tell me they'd been watching planes take off and land at the airport. It was obvious he thought that Daddy had some special access to this magical place that I couldn't possibly know anything about. It was so cute!

They can also be found at the sports store (where Preston rides a two-wheeler with training wheels), the motorcycle store (where he gets to sit on motorcycles and make all those engine noises that boys seem to just know how to make), the field at the park (to play soccer) and the tennis courts (yep... he's already got a racquet of his own). They are plenty busy themselves!

The pics at VitalStim were taken a few weeks ago. Unfortunately, this therapy has been put on hold due to insurance issues. We are in the midst of trying to iron it all out... er... appeal the denials that are forthcoming for the first four sessions in the hopes that we can restart soon. We have a PPO (in addition to her state insurances), so we don't have to obtain a prior authorization. Initially we were told that her sessions would be unlimited based on medical necessity (which there's plenty of documentation from ENT, Pulmonology and GI indicating the necessity), but it turns out that Electric Stim of any kind is considered "investigational" or "experimental" and will not be covered. (Interject whatever expletive you choose... I've thought it - - and maybe have even muttered it under my breath - - while dealing with this!)

Gracie loves this therapy. She'd get so excited when I'd tell her where we were going (we call it "taste & swallow work") and she's more compliant than most kids her therapists have worked with. She's had audible swallows several times throughout the sessions and is incredibly motivated. This makes us all hopeful... and makes the current situation all the more frustrating. We've waited so long for this opportunit - - it's her last hope - - and I will fight tooth and nail get it covered somehow.

And finally, for your viewing pleasure...
This was taken the weekend that Gracie started pushing herself up into a "W" sit. She corrects her legs - - then gets down. The next step is to get her to sit for a bit... she just prefers being horizontal unless given a little support. The good news is she is consistently getting herself into a sit at home now!

Backyard OT with Mommy (part 3)

We were at it again! This time with paint - - multiple colors - - and the kids used fingers, brushes, sponges... whatever they chose! First and foremost, this was fun. Lots of fun! Folded into all of that fun and tactile work were all kinds of learning opportunities. Disguised lessons - - my favorite way to work with and teach my kids.

We talked (and signed, of course) about the colors, the shapes of the sponges, the way the paint felt, the way the brushes felt, mixing colors and what each combination made (all the way until the combination was a murky brown!).

When they were finished, we inspected their colorful hands. Gracie was fascinated by hers - - staring at them for several minutes. They are pictured below... a work of art all their own.


When it was time to clean the sponges and brushes, we used a bowl of warm water. Thus, we talked about the water - - the color after we rinsed their tools, etc. Then we dumped the bowl and added more warm water to wash off their hands. We added ice and talked about it being cold.


We poured it out (actually, Gracie dumped it!) and we talked about where the water went (see Gracie looking through the bowl) and then how the bowl became a hat for her.


Then we laid the masterpieces out to dry on the lawn... here are a couple of them.
Never once did they realize how much "mommy school" was happening the whole time we painted and played!

First Day of 1st Grade

Today was Gracie's first day of the first grade... sigh.
I cannot believe that my little girl is now a big first grader. Perhaps because she didn't get to do the "normal" preschool routine and her "Kindergarten" school year was only a total of a little over four months plus summer school. Or, perhaps (and most likely) it's because I am in a bit of denial about how quickly time passes - - at least in some respects!

She wasn't all that thrilled about school this morning... didn't want any part of getting ready and was downright furious when we took her outside to wait for the bus. (Granted, she slept all of about three hours total all night... ouch for her... ouch for mommy!) But, when she actually saw the bus and got in her seat, she was pretty stinkin' pleased!

Shortly after the bus left, I went over to the school to discuss some things with the school RN and take Gracie's gait trainer. I got to see her happy little face for a brief second as she headed to another classroom for a bit. Her teacher and I also had the chance to talk today (we talked at length Friday when Preston and I took in a bunch of Gracie's supplies) and she's now seen the walking video and a bit of the blog... so she really knows what Little Miss can do! She's got Gracie's number now and plans on pushing her - - and I am happy! :-)

This is when she got home from school and
I asked her if she had a good day!
As happy as she was to be back at school, she was tired! After she cooled down from the ride and being outside, I fed her, gave her a breathing treatment and she took a 45 minute nap.

Then, it was off to PT and OT.
For PT, she wasn't all that excited about walking - - she was tired and, as luck would have it, it was the day that her PT wanted to time her walking certain distances for her assessment report... go figure! She had Gracie do other things instead and we will try the walking again on Thursday.

She was happy in OT, though... and sat up independently for most of the session - - only a few small protests and she was back up.

She practiced putting the wood blocks on the dowels and also threading them. Her favorite thing to do, though, is put her fingers in the holes and have blocks on all five digits!

She put the necklaces as part of OT, has little weights on her wrists and had all the frilly stuff around her, so Ericka, her OT, put the glasses on and I couldn't resist the photo op!

Hopefully, she sleeps better tonight!

Pixie Stix - First session of Vital Stim

Several weeks ago, I scheduled Gracie's first appointment for Vital Stim and, as I was making it, I had a fleeting thought of, "That's the anniversary of her first open heart surgery." But it wasn't until the morning of the 25th that I realized there was a real irony in the date that she began this therapy.

The 25th of August, because it was the day of her first open heart surgery, represents a series of events that significantly detoured the path we'd been traveling with our daughter. In the weeks to come, she had four failed attempts at extubation (getting her off the ventilator), an episode of significant oxygen deprivation and repeated raised CO2 levels... all due to a very angry, floppy and, at the time, insurmountably compromised airway. Then came countless tests, procedures, the pacemaker, the trach and all that goes with it.

Her airway has since healed and, though there are structural anomalies within her airway, the reason she remains trached is her inability to swallow her own secretions. August 25, 2004 was the last day that Gracie had a functional swallow of any sort. Five years... to the day... she started Vital Stim. Though I remain cautiously optimistic, I would be lying if I didn't admit that I find great symbolism in this realization. I tried to tell myself that I shouldn't be more hopeful because of the significance of the date, but secretly I was (am). And as I wheeled Gracie into the reception room for outpatient therapy, I realized I was holding my breath.

I was so nervous. Nervous that she'd not even tolerate the electrodes on her neck. Nervous that it would be a negative experience for her and she'd not last the full time. I was nervous for Gracie because I know this is, at least as of today's therapies and medication intervention, our last chance at helping her rehab her swallow. Though I claim to be "cautiously optimistic," I guess my nerves proved that I am hoping beyond hope that something comes of this. My head knows it's a long shot - - and my heart believes in long shots.

As it turns out, my nerves regarding her tolerance of the therapy itself were all for naught. Gracie handled the first session beautifully. Her therapist was great with her and set-up slowly to give Gracie a chance to check it all out. She was curious about the electrodes and tape on her neck, but only gently touched them. As the therapist turned up the electric stim, Gracie would freeze a bit and get this look like, "What's that?" A couple of times, but only for a brief second, she grimaced as the intensity increased and the left side of her face twitched a bit. Best of all, (and guaranteed to make her want to go back again and again), she gets to taste things the whole time! She started with a lollipop (fitting, as we've affectionately called her "Lollie" for years!) and then progressed to a tongue depressor dipped in Orange Pixie Stix! She loved that! She signed "more" and "ready more" throughout the session.

During the three month trial, we will be watching for an improvement with the number of times she requires suctioning during a session (and later, at home), the amount of times she coughs and secretions come out her trach, her ability to swallow as we increase the "management" difficulty with the types of tastes she tries and she could possibly have a repeat swallow study. At the end of the three months, it will be determined how/whether to proceed.

And though the skies didn't part and Gracie didn't miraculously swallow everything in her mouth, she did have many audible and visual swallows during the session. One, in particular, was done with great timing and coordination in relation to her tasting of the Pixie Stix. Her therapist was completely impressed with her tolerance and was happy with the oral motor activity she saw along with the swallowing attempts during the stim. So, as I continually say regarding so many things with Miss Gracie, these are baby steps... but they are steps, indeed!

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!)

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.

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.