Pics of the 'anchor'

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

New blog to share

Thanks to little miss mayhem, i've had the privilege of meeting this wonderful, very supportive and always helpful lady named Debi. Debi and Taylor both have congenital upper extremity amputations. Taylor's on the left and Debi's on the right. We first met when Taylor was about 4 months old, minutes after Taylor received her first prosthetic arm. Debi shared a glimpse into her life from birth to present and I left that day knowing without a single doubt that Taylor would grow up strong and always be able to do anything and everything she put her mind to. I love being able to get her feedback on things. Generally I really only have the insite of other parents of children like taylor who have been in my shoes, I don't often, or ever usually, get to hear and see things from the amputee's perspective. Debi has shared her experiences as a child, teen, adult, mom and now grandma. She's been through it all and then some i'm sure. With '1/2 a century' of knowledge and experience, Taylor will always be in great hands with Debi around. That said, Debi has started a blog so that she can reach out and help and educated even more people. She just started it a few days ago so there are only a couple posts so far but i'm truly looking forward to her posts to come. Her blog is called
Single-handed Solutions and the site link is:
 www.singlehandedsolutions.blogspot.com 

Enjoy!

-- Sent from my Palm Pixi

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

Lovin' her arms



Tabs, tabs and more tabs

Taylor's New Arm

We went to Shriners yesterday and picked up Taylor's new arm. Taylor's prosthetist showed me some "sport hands" (as I call them) for bicycle riding, baseball, stuff like that. Its really wonderful that there are so many different attachments to do different things. I was also able to bug Bernadette and Lee for a bit which is always nice. And I brought down our tab collection...... almost 100,000 tabs!!! That was interesting..... trying to carry 4 5-gallon buckets, which were full, as well as my purse, camera and diaper bag....and both girls.

I grabbed the blanket I made for her and she realized right off that her arm matched her blankie.


Ashtyn and Taylor worked their charms on a Shriner that was there in the morning and he gave them each a Potentate pin. Miss Ashtyn decided to wear her chocolate milk instead of drink it so she got to sport the very last Shrine On 09 shirt instead of her St. Patty's Day greens.

You can tell Taylor was exhausted. It was a very long day.....too much car time and not ANY naptime.
I'd jabber on more but no one wants to nap today either so I have to cut it short.

"Oned-handed" ambidexterity

I tried to upload this video onto blogger but after 5 hours I gave up.



Probably not the most exciting video to some people, but I'm pretty gitty about it.

She has been doing so much two handed stuff lately, like holding her cup with both hands and "driving" her ride on toys.....she tried to dig in the dirt with Ashtyn using her pro arm to hold the shovel.....the dirt was still frozen...but she tried :)

Taylor, my dear, you get an ATTAGIRL from Mommy. (and not the sicko definition....weirdos)

5 more days until we get her new hand. I have no idea if its the same type of hand or if they're just making a new arm for the hand we have..... I really never thought to ask....... it doesn't matter.....I'm just happy that they are able to provide prosthetics for Taylor. We know she can do anything and everything without a prosthetic, but she uses and LOVES her hand(s)..... I would be so heartbroken for her if she wasn't able to have them. I know she's super happy to have a helping hand.

When it pours.....

Last night when I got the mail it was a surprisingly huge wad of envelopes. Roughly 30 letters. I open a huge envelope from SHC. It contains this really nice golden certificate thanking us again for our fundraising and letting us know they have put us in "the golden book" of donors. I'm so excited about it and I run right upstairs and frame it and then proceed to get to the other 29 envelopes. 2 bills, a couple junk mail things and then 20 envelopes are left which are frighteningly all the same size.....and all from our insurance company. Do you hear the jaws theme playing.....du dut du dut....
anyway, so I grab one and open it up and Jeremy sees the stack and starts opening one, you have got to be shitting me. These idiots sent us 19 letters informing us that they were billing Taylor's physical therapist for her services because they over paid them. Hello!?!?! Taylor's therapy is $160 bucks each visit and she usually has one each week. These friggin morons didn't start paying anything until a couple months ago and they only paid like $110 of it. So all the while the PT's company has been eating the loss. Now these assholes want the little bit they did pay back because "Taylor's diagnosis is an unapproved condition" I respond with, "Unapproved condition, seriously?" While I really feel like screaming: GO F YOURSELF! "Yeah, I'm sorry but we're not going to be able to cover these services" You have got to be kidding me.....
this is awesome!
They don't and won't cover her prosthetics, or anything that goes with them, ie visiting the ortho for the rx for the prosthetic, the suspension sleeves, the socks that go on her arm....nothing. And now they won't cover her physical therapy!?!?! If it weren't for her PT, she'd still be walking like an 80 year old pirate, and her arms would still be glued to her sides, and her balance would still likely be totally out of wack. Her PT has worked on so much more than just making sure she could use her prosthetic and do things without it.

The gov't has given us the FO
The state has given us the FO
and now our insurance company

what the hell is wrong with people?

Prosthetics are cosmetic, no pre-existing conditions, how 'bout FO to that!

If I ever hear prosthetics are cosmetic again, the idiot who says it to me will likely get punched in the face.

And so now, on top of the BS with them billing the therapist, that also messed up our deductable so we'll likely be paying a bunch more money for other visits that were previously covered and either the therapy group has to eat the entirety of the bills or we won't be able to have her come as often, if at all. Super! I'm so irritated right now......there are no words.

ReBuilt is back!

A few months ago I found this awesome show on FitTV about people with prosthetics, the people who made their prosthetics. It was really neat to see how they were made and the many different kinds available and what the different ones do or activities they make easier etc. Its called 'ReBuilt:The Human Bodyshop'. Two weeks after my discovery, the show just disappeared with no explanation. It is now back on and I did some checking online about its disappearance and found out it was a short lived series. The first episode aired January 18, 2006 and the 12th (and last) episode aired April 5, 2006. That said, FitTV is showing the series again...here are the dates and times I have found: Dec 7 at 2pm and 3pm, Dec 11 at 9pm, 10pm, Dec 12 at midnight and 1am, Dec 14 at 2pm and 3pm and Dec 18 at 9pm and 10pm. FitTV's site would only give the listings up to the 20th so I don't know any other dates and times yet but if you have the channel, I'd recommend cheking it out.....the few episodes I've managed to catch were really awesome.

Link to FitTV schedule

Smarty baby

I finally caught it on video...... she's so funny, she "kisses" her smilie to lube it up like I do when her nubbie isn't cooperating.... a little spit solves almost every problem :) I don't really know what the deal is with her nubbie randomly swelling....Monday I couldn't get her prosthetic on without removing the spacer sleeve and putting a nylon on her arm, then on Tuesday I had to put the spacer sleeve back in it and use the suspension sleeve to keep her prosthetic from falling off...... little weirdo.

Taxing Prosthetics?

***I am seriously hoping this is untrue. If anyone finds info to debunk this, please send it my way***

Click here for~~~Original Post

By Dick Morris And Eileen McGann 11.7.2009 Published on TheHill.com November 6, 2009

As the suicidal Democratic congressmen proceed to rubber-stamp the Obama healthcare reform despite the drubbing their party took in the ‘09 elections, the president trotted out the endorsements of the AMA and the AARP to stimulate support. But these — and the other endorsements — his package has received are all bought and paid for.

Here are the deals:

* The American Medical Association (AMA) was facing a 21 percent cut in physicians’ reimbursements under the current law. Obama promised to kill the cut if they backed his bill. The cuts are the fruit of a law requiring annual 5-6 percent reductions in doctor reimbursements for treating Medicare patients. Bravely, each year Congress has rolled the cuts over, suspending them but not repealing them. So each year, the accumulated cuts threaten doctors. By now, they have risen to 21 percent. With this blackmail leverage, Obama compelled the AMA to support his bill…or else!

* The AARP got a financial windfall in return for its support of the healthcare bill. Over the past decade, the AARP has morphed from an advocacy group to an insurance company (through its subsidiary company). It is one of the main suppliers of Medi-gap insurance, a high-cost, privately purchased coverage that picks up where Medicare leaves off. But President Bush-43 passed the Medicare Advantage program, which offered a subsidized, lower-cost alternative to Medi-gap. Under Medicare Advantage, the elderly get all the extra coverage they need plus coordinated, well-managed care, usually by the same physician. So more than 10 million seniors went with Medicare Advantage, cutting into AARP Medi-gap revenues.

Presto! Obama solved their problem. He eliminates subsidies for Medicare Advantage. The elderly will have to pay more for coverage under Medigap, but the AARP — which supposedly represents them — will make more money. (If this galls you, join the American Seniors Association, the alternative group; contact sbarton@americanseniors.org This e-mail address is being protected from spambots. You need JavaScript enabled to view it .)

* The drug industry backed ObamaCare and, in return, got a 10-year limit of $80 billion on cuts in prescription drug costs. (A drop in the bucket of their almost $3 trillion projected cost over the next decade.) They also got administration assurances that it will continue to bar lower-cost Canadian drugs from coming into the U.S. All it had to do was put its formidable advertising budget at the disposal of the administration.

* Insurance companies got access to 40 million potential new customers. But when the Senate Finance Committee lowered the fine that would be imposed on those who don’t buy insurance from $3,500 to $1,500, the insurance companies jumped ship and now oppose the bill, albeit for the worst of motives.

The only industry that refused to knuckle under was the medical device makers. They stood for principle and wouldn’t go along with Obama’s blackmail. So the Senate Finance Committee retaliated by imposing a tax on medical devices such as automated wheelchairs, pacemakers, arterial stents, prosthetic limbs, artificial knees and hips and other necessary accoutrements of healthcare.

So these endorsements are not freely given, but bought and paid for by an administration that is intent on passing its program at any cost.

A prosthetic that can feel

Full Article

Its that time of year again

The first Saturday of August is the day of my family reunion every year (on the Lemieux and St. Sauveur side)....it is also the peak of our Old Homes Days celebration.....So every year on this Saturday we go to our reunion location and hang with the family. We get to see our relatives we don't know, the ones we do but don't see except for on this day every year, and of course the ones we see all the time. Its usually a blast....minus those few awkward teenage years when its not "cool". The kids and I had a blast, Jeremy was stuck at work, and around 5 my more immediate family departed to go back to my place for the Old Homes Days fireworks display.

Today Julie, Jeremy and I took the girls to the Cheshire Fair. It was a good time even with the sprinkles.... Taylor's having a total cow right now though so I'll have to share the stories later...I just wanted to get the pics up before people start calling to ask where they are

The best place on earth

It was punk day for miss Taylor...she finally has some hair...I felt the need to show it by putting it in a mohawk

The girls and I went to Shriners Hospital yesterday to get Taylor's new arm. Every time I go there I love it more and more. We got there ridiculously early but it never really matters, there's so many people to see and talk to and wonderful things to look at and things to do. Ashtyn and I had a quick lunch outside since Taylor was sleeping when we pulled in and then I grabbed the gigantic trash bag of soda tabs

(this is only a portion of what I brought in....and yes that is a 5 gallon bucket... Many thanks to the Ladies Auxiliary in Charlestown.....we love you)

and Taylor and in we went. We weren't even there 5 minutes and Ashtyn was ready to live there forever. Her big thrill for the day was getting to see Sulley (from Monsters, Inc)....well that "big" adventure was tossed out to see Daffy Duck, Bugs Bunny, Tweety Bird, Sylvester and Pepere LePew who were visiting Shriners Hospital from Six Flags. Tweety was in love with Taylor, Ashtyn was in love with all of them, and Taylor was kind of like, why are these "little" animals bigger than me?

I thought Ashtyn might have a break down when the characters left but luckily there were some volunteers with a playdough station set up....crisis avoided...yay. Someone didn't show for their appointment, so we had ours early.... We got her new arm and then Rob (her prosthetist) showed me how to change the hand.....6 months of having this thing, I would have thought I would have figured that one out on my own....duh.... so she has 2 hands or her prosthetic now.... the new one is a bit larger than the old one and her real hand...its Ashtyn's size...or maybe a little bigger...but its the only size they make that hand in...she'll grow into it. And I know Kristy (her therapist) will work her magic teaching skill wand and Taylor will be a pro at using it and picking things up with it in no time. After our visit in O&P we went out to the lobby area and hung out there for at least an hour. Seriously this place is just awesome. I know I'm a pretty boring individual, but SHC rocks! We hung out with the receptionists and Ashtyn and Taylor played with the ball machine thingy.... and a Shriner from Pyramid Shrine in CT, Robert "Bob" Harriman and his wonderful wife..... I'm so sorry I forgot your name..... they played with the kids and spoke with me... it was a wonderful time. Bob put his Fez on Taylor, it was so cute. And of cource as usual my pictures are super limited.....I need to drag someone with me on visits just to take pictures for me. The publicity crew did take a bunch of pics of me and the girls with the characters and when I get the email, I post those pics too.


Bob and Taylor


The ball machine thingy....and Ashtyn's favorite seat


A good sign :)


It was a great time and a great day...even with the over tiredness..... I'll post some pics of Taylor's new arm today hopefully...she wasn't very interested in any more photos being taken last night.


These are the pics they took of us...

Can't tell I'm embarrased....

Another wonderful visit to Shriners Hospital in Springfield

Little miss Taylor has grown out of her arm so Auntie Lisa came down to play with Ashtyn for the day while Taylor and I went to Shriners to see Dr. Wenner and then visit Rob in O&P to get fitted for her new arm. We also dropped off the donations everyone collected for our SHrINE ON SPRINGFIELD fundraiser. They took a few pics (which you can see I did not...unfortunately) but it was a good time and everyone there just loves Taylor. I think we spent an hour just sitting in the middle of the walk way in the lobby with everyone googling over her. It was awesome to see grown men crawling around on the floor with her and replying to her growls with their own rendition. I just love that place so much. Every time I go I love it more. I can't imagine Taylor not being a patient there. It would break my heart to have to go somewhere else. As you'll see below, I'm not the only one who feels this way either. The first two pics are signatures of a petition to keep Springfield's facility open..... I have no idea how many names are on each piece of paper but as you can tell it spans two full walls.

This last pic is just a small taste of the letters received. They are from all sorts of people, families of patients, patients themselves, school children, friends of patients, professionals, Thank you notes, cards of concern, everything. All people who stand behind this wonderful hospital whether they're patients or not. Its a true testament of how much we love and appreciate everything that Springfield has done. To everyone at Springfield....Thank you.

Little miss Mayhem and I will be going back in a few weeks to get her new arm and visit with everyone again..... I can't wait... her new one is "antique-ie dots" and it has a spring loaded thumb....you'll see soon.