Time gone by

While attempting to 'clean house' I came across Taylor's old onsie. I forgot how little she was when we moved here!!!!

I love this little onsie! My sister bought Taylor a package and a 'Babies First Christmas' pj onsie and as an awesome, awesome surprise, she had cut all the left arms and then sewed the wrist seems back on so Taylor had some outfits tailored just for her. Too cute! 

The Christmas one is safe and sound waiting for the day Taylor has her own little baby but these onsies had the priveledge or misfortune depending how you look at it, of coming to finish their existence at camp. They are trashed and thrashed and completely covered in permanent mud stains! 

Ohhhhhh the baby/toddler days.....

www.totalchaosandmayhem.blogspot.com

- Sent from my Palm Pixi

Pics of the 'anchor'

Attempt number 2 is so far successful!

Woohoo! So I tried to attach Taylor's anchor "sticker" (i promise i'll post pics soon so you understand what i'm talking about). And I got it right this time. 

Yay! This morning I set up Armie to operate with the anchor and so far so good. The only issue this morning was Taylor was kindof doing the limp arm thing...where she acts like she's paralized or whatever with her left arm. I think it is because she is so used to having the harness wrapped around her right shoulder, that without it, she forgets her Armie is on. As soon as I remind her to try using both hands, she's back at mastery level prosthesis use.... So that's my take on this morning. We will see how she did with the new set up after school :)

- Sent from my Palm Pixi

The first solo mission.....

When we left Shriners on the 24th, I was ditched back at my in-laws' to finish recovering from my surgery and by Sunday catch a puke bug :( & my mom took the girls to her house for the remainder of their school vacation.

While I wished I had taken a day off of work to 'enjoy' my no-kiddo time, i'm glad I didn't because whenever Jeremy & I weren't at work we were whining that we missed our girls.

The girls had a blast the entire time of course. They made cookies, whoopie pies and cooked their own pancakes! They went to the Children's museum, went sliding when we had our freak snowstorm, went to the movie theater to see The Lorax and topped off their vacation with a trip to an indoor waterpark in the White Mountains. Spoiled much!?

While this was going on.....

Tayt had her anchor "sticker" on but was using her harness. With the challenges of an overtired child and getting her harness set up after being at the hospital all day and then the wonder/worry about how super crazy sensitive Taylor's skin is, she went to Grandmama's & I kept the other part to her anchor.

The "sticker" stayed on her until Wednesday night (6 days), and that was after probably 12 tubbies (we don't have a tub so they find any excuse to take several tubbies whenever they go anywhere else). She did have some redness around where the anchor sticker was and a little zit. It looked a little not good especially to super-protective Grandmama & Auntie Julie who aren't used to seeing Tayt's skin freak out from everything on a daily basis. But it wasn't bad.

The bulk of that week, from my understanding and the pics i've seen, she didn't seem to wear her new Armie much at all. Oh and it's not New Dora or Pink Dora, it's Boots Armie as she keeps reminding me. I'm not sure why she didn't wear it.... I can't tell you how many nights I have to force her to take her Armie off before bed. The only thing I can think of is her harness was really loose when she came home, so maybe it was annoying her but I don't know.

Tuesday the 6th finally came and after Jeremy & I got home from work, fixed our frozen-again-but-not-supposed-to-be-able-to-freeze water spout, we finally made the journey to get our girls. We had a delicious dinner when we arrived and then packed everything up quickly and hit the road again. We arrived back here around 11pm. Come 6am I was not in the mental state to set up the anchor so Taylor wore Boots with her harness. Everyone at school loved her Dora dress (the one that matches her Armie) and they were so excited to hear about her adventures & the anchor system.

The next morning (Thursday) I braved my first solo anchor attachment.

It didn't go so well.

I did as instructed with the rubbing alcohol, compound tincture etc. Even the placement was good. But on the way to school Taylor said her sticker was falling off. After seeing this thing stay on for almost a full week I knew there was no way it was coming off.

We get to Taylor's school and she proves me wrong.

Leave it to me to find out the hard way that when the tincture package says "discard after single use", it doesn't mean "use me, save me for 12 days and use me again".

Sooooo, yeah.

The sticker was now turned sideways and her fragile back skin was not happy about it. After a quickly failed attempt to fully remove the sticker, we left it alone and put on her Dora armie (the old one) for the day.

I picked Tayt up around 230 to bring her to OT at the hospital with Tim (he's the OT whose LAE) and he is sooooo excited to hear and see this anchor system and her new Armie. And he's quickly saddened to hear I messed up so he would only get to see her new Armie and not the anchor yet :(

I had tried again while waiting for her appointment to remove the sticker with no luck and a few whines. And at that point I was a bit worried about her having to wear it crookid for a bunch of days until it came off on it's own.

When we got back home I had her hop in the shower and began to search for anything I could think of to get the sticker off of her. Much to my surprise, it was so incrdibly easy to remove it. I tried Johnson & Johnson baby soap, that didn't work. I thought about how slimmy conditioner is so I tried that. Poof! Not even any real effort and the sticker came right off without a peep from Taylor.

I figured i'd give her skin a rest after torturing the poor kid with my stupidity and we will try to attach it properly tomorrow.

I am also debating about changing her band back to the weaker one until she is used to the new set up and maybe trying the weaker of the two adhesives to see if she has less irritation.

We shall see tomorrow

- Sent from my Palm Pixi

Playing with Legos at Shriners Hospital

"Legos" YouTube Video

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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.

Thinking of you Hillary

Huffington Post article: The Opportunity in Loss

From Huffington Post: http://www.huffingtonpost.com/hillary-st-pierre/new-perspective-with-cancer_b_959943.html

www.totalchaosandmayhem.blogspot.com

- Sent from my Palm Pixi

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.

 

Tabs For Taylor

- Sent from my Palm Pixi

SuperMom, Hanna Rapini, speaks before Congress

http://www.youtube.com/watch?v=9hyVRP0lToY&feature=youtube_gdata_player

- Sent from my Palm Pixi

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