Long Overdue

Where do I begin? 

 April, instead of bringing showers, it brought us Shriners Maple Sugar Bowl banquets!

The first one for the football players...

and the second was for the cheerleaders and band members.

Taylor was on cloud 9. Ashtyn was pretty excited too but obviously a tad jealous.

We cured that, at least temporarily by the beginning of May when we went back to Springfield Mass for the 

Melha Shriners Circus!

 

And we had a blast!

The girls of course had to stalk the clowns ;) 

CLOWN LOVE <3 nbsp="" p="">

"Fix It"

June came along and brought with it A HOME! We finally FINALLY have a home again! In between moving and unpacking and running around like a bunch of crazy people, we snagged a few moments to go out and have fun as a family ;)

The day after we bought the house was our annual Shrine On Springfield walkathon for Shriners Hospitals. It was a much smaller group this year due to the multiple graduations that were happening that day as well as 3 different alumni "happenings" and parades but we still raised $1733 for Shriners Hospital in Springfield and we had a fun time doing it. "Fix It" even came up from Mass for our little shindig and made the girls' day ;)

Then it was back to craziness.......

July (and especially Grammy) brought us a trip to Old Orchard Beach Maine......

.....and then sent us to see TAYLOR SWIFT! 

Which was an experience I can't say I ever want to relive. The show itself was fine, good even, but getting into Gillette Stadium was stupid! Then the first 30 or so employees we dealt were so beyond idiotic and down right mind numbing....... its no wonder some people just go postal. Wow! Luckily we met a few employees who had common sense, personalities and were completely down right awesome and turned our (or at least my) anger into a fun time. Liv, Auntie Momma and Boss Man, you guys saved the day ;)

We got a little soaked....... but all in all they enjoyed their first concert.

But if I ever even think about going to a place......

that seats 60,000 people again....someone slap me please!

Then it was time for another Sugar Bowl event............. the Golf Tournament. Ashtyn got to drive a golf cart at the country club and decided that was "the best thing EVER".

And then came the crowning of the King and Queen at the pre-game banquet last Friday

followed by the Saturday parade..............

 and THE GAME!!!!

 Tayt and her buddy Dan

We then all got a little R and R when the girls spent this past week visiting our Lakes Region family. Jeremy and I got to dust off our motorcycles and finally ride them. And the girls had their days filled with all the usual Chaos and Mayhem type fun.... Making trips to see some "Tabbies", heading to Maine for another adventure in Old Orchard, feeding reindeer and visiting with Santa up at Santa's Village, camping, baking, shopping, bubbles, bicycles and having a blast. 

I don't know about you but I'm exhausted just thinking about all of this ;) 

That's all I've got for now but there's plenty more to come........

Playing with Legos at Shriners Hospital

"Legos" YouTube Video

- Sent from my Palm Pixi

Mayhem's New Armie "Pink Dora"

Taylor, Ashtyn, my Mom, my Aunt Lisa and I went down to Springfield MA Thursday night to beat the snow and ice storm that was heading our way and ensure we would make it there for Taylor's appointments at Shriners Hospital on Friday. I can honestly say my girls were never so excited to see a hotel room or tub.

We stayed at the Comfort Inn and Suites. My mom went with a suite, as you can see from the enormous tub, and made Ashtyn's night Thursday as the 4 of us bigger people put on our bathing suits and sat in the bubble filled hot tub while Taylor was snoring away. Ashtyn was pretty excited to have some focus-on-ME time. In the morning Taylor was able to splash and play in the tub with big sister and the girls had a blast. Then we filled our tummies with waffles, sausage and yogurt before heading over to Shriners hospital to pick up Taylor's new "PINK DORA" Armie.

Almost as soon as we arrived at the O&P depatment, my thoughts were confirmed.....  My Aunt Lisa's friend, "Big Lisa", gave Taylor a pink Dora dress. No one knew or had any idea that it was almost the exact fabric that Taylor was having put onto her newest Armie.

The only differences between the fabrics are her Armie is darker pink with slightly darker flowers and Dora's hair is more rounded than it is on the fabric of her dress. It was so awesome to see that dress. It couldn't have been more perfect. Taylor was so excited.

I still can not get over how much bigger this Armie is. When we were down for her fitting 2 weeks ago we were actually debating wether or not it was time for a new one. Seeing the old one and new one together pretty much confirmed that it was in fact time.

But the day did not end here.....

We also dropped off our current pile of Tabs For Taylor.

(don't laugh at my swollen face....i had my jaw cut open the morning before this and yes its very swollen and not so comfy)

And then the surprises continue too......

Little Miss Mayhem's Armie is set up to operate not only her hook hand via figure of 9 harness, which is what and how she has been using it since July of last year, but it also has Li'l EZ hand (the one that opens and closes...kind of the exact opposite of the hook hand......she used to have this hand on her green and purple zigzag armie). This hand can be operated with a different cable and harness. AND.....AND......Taylor received the Anchor System!!!!!!!!

For those who do not know about the Anchor System...........

(this article is from SingleHandedSolutions  and Springfield Shriners Blog)

"Debra A. Latour, M Ed, OTR/L, has worked at Shriners Hospitals for Children in Springfield, Mass for 13 years. Before she was employed by the hospital, she was a patient. Her parents sought treatment at Shriners when she was a toddler for an upper limb deficiency.

For many years, Debi used the traditional body-powered prosthesis which is activated by a figure-of-eight or a figure-of-nine harness system, using the opposite shoulder as the power source. Many users of this system complain of discomfort from the harness, typically the rubbing on the skin by the harness, asymmetry of the shoulders, pain in the opposite shoulder area, difficulty while performing tasks with both limbs, and diminished physical appearance. When Debi began to experience her own problems with the usual harness system, she relied on her 30 years of experience to solve her issues.

As a Senior Occupational Therapist, Debi knows exactly how to help patients develop skills needed to live as independently as possible and to help improve the quality of their lives. In an effort to achieve these goals for patients with an upper limb deficiency, she invented a new and improved way of harnessing a body-powered prosthesis called the Ipsilateral Scapular Cutaneous Anchor system (the “Anchor”). Her design eliminates the usual harnessing, often a source of complaint and one reason why children reject prostheses.

Debi submitted a paper on the “Anchor” to the American Academy of Orthotists & Prosthetists which was accepted for presentation at the 2011 Annual Meeting & Scientific Symposium in Orlando, FL. Presentations such as this serve to inform professionals in the community of new and creative solutions in treatment and also promote Shriners Hospitals for Children as a center of innovation and excellence in treatment, research and education.

While attending the symposium, Debi was interviewed by a reporter for O&P Business News. She provides a wonderful account of how her invention and her blog, Single-Handed Solutions, materialized."

THIS ANCHOR SYSTEM HAS BEEN ONLY AVAILABLE TO SHRINERS HOSPITALS PATIENTS!

Until now! 

Debi has been granted sole license to market and manufacture this system and it is now available to everyone. It can be purchased directly from Single-Handed Solutions, LLC. For more information, contact Debi Latour at LatourAnchor@gmail.com

As soon as my little monkies come home next week (they're on vacation with GrandMaMa & Papa) I will be documenting Taylor's experience with this new Anchor technology. I am so excited to be a part of this and I can not wait to tell everyone all about it.

We've tackled zipping with Armie :)

A couple days ago she tried to zip her coat all on her own and to her and my surprise, she did it. She was so excited, she has been showing everyone her Zippin Skills ever since.

 

YouTube video of Taylor's new arm

http://www.youtube.com/watch?v=YKNyuMtaC9A - Taylor's Newest Prosthetic Arm

- Sent from my Palm Pixi

Another Shriners Hospital Adventure

Little Miss Mayhem got her new Dora armie yesterday!

What an adventure.....poor kids.....they were cooped up all day wednesday at my job, then stuck in the car (luckily for me they were asleep) until 1am thursday, then crawl their little bums into the house to continue sleeping until 6:30-7 then get back in the car. We arrived at Shriners at 9:50 and that's where we stayed until around 2:30. (Which actually wasn't a long day there but the girls I think had a slightly different opinion.....)

It was a full on kiddo rainbow in Springfield yesterday. Armies, Leggies, Cleft lip pre and post op, you name it. A building full of beautiful, perfect babies and children. Taylor was the center of Makayla's (also an LBE kiddo) attention. She was pretty excited to see another kid, especially a girl, with a limb difference too. It took Taylor a while to realize other kids there were just like her and then she nubbie bumped everyone including her OT, Debi.

Miss Muffet wasn't always so friendly yesterday though. When she saw her new arm she was all excited. 'Lookie Mom my Dora Armie' and she put it on. Then she took it off and didn't want any part of it. OMG! So Rob (the almighty armie maker/fixer) and I are trying to coax her into cooperating so he can figure out if her harness is too long too small whatever, and Taylor wants no part of it. She is a mini NinJeremya! Wow stubborn much.

We eventually win (with bribery) and she puts armie back on. And the leash (harness) is too long. But she won't wear her [nub] sock and after the battle to get her prosthetic on, we're not taking it off to adjust the leash or address the sock absence. So we run to visit with Debi upstairs for a bit and Taylor shows everyone she can open and close her new hand (this one has the body powered hook instead of the opening closing fakie hand she had last time) and then she takes it off.

Debi showed Taylor how she takes off her prosthetic (she's an all knowing and totally awesome, resourceful, informative....yes I can keep going.... Inventor, blogger, OT, RBE), and how she puts it on trying to get Taylor to do them same with hers. Instead Taylor was all excited and curious about the powder on Debi's nubbie. So Taylor tried to steal her powder by giving repeated nub bumps. So Debi ran around and found Taylor her own bottle of powder. We now have that side track done and Taylor finally shows that she can put on her arm and the leash all on her own.

Next, Taylor shows Debi she can open and close her new armie by opening the hook and then closing it on Debi's nose. Mind you this was Debi's idea, and she pulled back so Taylor didn't cause any harm. Then, in walks a kiddo and her family. Side track number 57......Taylor shows them she can open & close the hand and then takes off her arm to show them her nub. Here we go again. Now she wasn't excited about it again. At this point Rob tracked us down to check on how Taylor was doing and saw his opportunity to adjust her cord and harness so he snagged her new armie to go and fix it up, and we finished up with Debi. We eventually make our way back downstairs to meet back with Rob. Now her arms all set and we have battle royale again. We won and Taylor put on her armie and we were good to go. So we say our goodbyes and make our way to the car. I loaded up the kids and away we went. Taylor was asleep by the time I got to the Shriners Hospital sign, which is literally like 250 feet from the door of the hospital and Ashtyn was out at the I-91 on ramp about 3 miles away. Ahhhhhhh silence :) They woke briefly in Brattleboro long enough to eat a bagel (as Mommy's dumb and forgot to bring cash for lunch) and back out they went for most of the ride back to the almost-Canadian border. We finally got out of the car at 6:45 (and lucky me I got to work 3rd shift after all that).

Back to reality


Since we left Taylor has hard her Dora armie on almost every second she's awake (and sometimes when she's sleeping) and she really likes it. She's so happy she can finally hold things in her armie. I can't thank the Shriners and Shriners Hospital staff enough. Thank you. Truly from the bottom of my heart, you'll never know how wonderful you've made my daughter's life and mine.

- Sent from my Palm Pixi

Busy day (second attempt to post)

Ashtyn is off enjoying old orchard beach with grammy and grampa, and jeremy is working so taylor and I joined jeremy at work. Today st. johnsbury is having this sort of summer fest with a farmers market, bounce houses, you name it. Almost every business in st j has a tent set up on the street to entice you to buy their goods. And because it is a town wide 'fun day' they have a special passenger train (which is why jeremy's working on a saturday). Taylor and I went on the first run which took us from st j to barnet and back, the next one went to lyndonville and the last one will go to barnet again. We had a nice time. We got to enjoy different scenes than we were used to going on the bf to chester runs back home. I didn't even know that the connecticut river (pic posted) was up here too. There were some local celebrity types on board with us, radio djs, photographers, etc, all excited to see a passenger train run through their town. Jeremy and bryan did an excellent job 'driving' the train. It was a little speedy at one point I thought anyways, jeremy laughed at me about it, but whatever. The other kinda scary part was the zillion 100+ year old bridges we relied on to carry our tonage of trains and people across the connecticut and passumpsic rivers the whole trip but I guess if jeremy has to do that daily with 40 cars full of freight it could handle the engine and our three cars of people. I got to feel like the technology goddess for a little bit as I uploaded pics to facebook during the trip. This guy, who I found out later was the dj, was talking to brian (our train tour guide from bellows falls) about how the train should offer wifi and they both grumbled back and forth about not having cell signal (get verizon!!!!) I laughed when I heard him on the radio on my way home as he told his listeners about how he couldn't broadcast from the train because there was no signal available on the route..... Could have used mine..... He also could have done his blog post that he wanted.... But nope, I figured it out too late.....sorry. I felt bad about it really, especially after hearing his really great plugs for green mtn on the radio. Jeremy's embarrassed.... The radio crew took pics up on the engine and he's in them...haha, they weren't posted yet but the blog where they should be is www.vermontradio.blogspot.com .... Wicked funny! Anyway, I wish taylor wasn't so tired, it seemed like it would have been pretty fun to roam the streets of st j for a while but she was out before we left the parking lot. Oh well, maybe next time.

Lovin' her new arm

Thank you Shriners Hospital- Springfield! Taylor had an ot appointment today and she was uncooperative to say the leasy but once she had a nap and some more checking-things-out-on-her-own time she's doing awesome. She was picking up little sticks and her straw wrapper....all sorts of little things. She doesn't mind the harness at all which was a big fear I had. She's just doing so awesome. I can never thank SHC and all the Shriners enough.

-- Sent from my Palm Pixi