Friday, March 28, 2014

Tenny and the Upsee

When you have a child that has a brain injury, people are quick to assume what your child probably won't do. Doctors tell what you shouldn't expect. But I can't stop wanting Tennyson to have every opportunity that any other kid gets. I want her to have true friendships, and fun, and enjoy playing, and love learning and being outside.

I will be her voice, her arms, her legs; because she is my heart.

We are one of four families in the United States that have been able to trial the Upsee, a new product by Firefly.

Here is a video of Tenny using the Upsee:



I know a lot of people reading and watching this are new here and may not know much about Tennyson, so let me take a moment to tell you a little bit about her.

Tenny is 4 1/2 years old. She was born early (at 35 weeks), delivered by emergency c-section after she stopped moving. She was growth restricted and weighed just 2lbs 15oz. It was determined she suffered a lack of oxygen at some point which resulted in brain damage. Her gross motor skills have been severely affected. Her main diagnosis is spastic quadriplegia cerebral palsy, but she has many others. At this time, she is unable to sit independently, crawl, stand, or walk. Cognitively she is very aware and she is a beautiful, happy, smart, social girl.
(That's the short version)


Here is my honest review of the Upsee:

(full disclosure - I was not paid any money to review this product, however, 
we were sent a prototype to trial and use. I don't have any inside connections to Firefly - I just answered an e-mail I saw looking for participants to trial new products.)

Because Tennyson has very little gross motor skills, I was skeptical of the Upsee. But the Upsee has been a game changer for Tennyson. The Upsee makes it easy for teachers to include her in activities more completely. I'm lucky - I don't have to fight battles and win wars for inclusion like some parents do, but there is a difference when Tennyson can "dance" into circle time with everyone else, as opposed to being wheeled in.

The first time we used it, I found it emotional to see her standing. To be seeing how tall she was and what it would look like if she could stand. (so prepare yourself for that!)

We were instructed to use it on a weekly basis to optimize possible benefits. I would say she realistically uses the Upsee three times a week. I send it with her to school everyday and tuck it into her cubby with her backpack.

It's not heavy, but it's very high quality. It's durable! The fabric doesn't stretch, but the buckles and straps make it very adjustable for both the adult and child to ensure a good snug fit. It's also a cute denim type material with either pink or blue accents for a girl or boy.

It feels secure. I didn't feel like I was going to fall over, but you do need to take slow, deliberate steps. Basically, I wouldn't run in the Upsee.

For those who are wondering how big Tennyson is - she is 28 pounds and 39 inches tall. We have plenty of room to grow with this Upsee. 

How did it help?

We have seen improvements in Tennyson's head control and her ability to actively weight bear on her legs. We will continue to use the Upsee regularly and I anticipate more improvement in each of these areas.

Would I recommend the Upsee?
Absolutely, without a doubt, YES!

I need to give a lot of credit to Tennyson's therapists and teachers. We have a pretty awesome village of people that invest their time, love, and energy to make sure Tennyson has great opportunities. They were open minded and ran with the opportunity to try the Upsee and used it regularly in therapy and in the classroom. (And they took video so I could see it all!)

Those were real firsts for Tennyson in that video - walking on snow for the first time, kicking a ball on a playground, pushing a toy shopping cart, "walking" and holding hands with her friends, standing and playing a drum, pushing her own wheelchair. I saw each of those short videos individually, but when I saw them all pieced together for the video, I realized what incredible opportunities the Upsee gives kids who don't have gross motor skills. It gives them a chance to have the experience.

How much will it cost?

If you're ordering from the United States, the cost will be $489.00 which includes shipping. 

When can you buy it?

It launches on April 7th for the United States! Firefly would like you to sign up for one of their 3 webinars so that they can release more details to people who are interested in purchasing the Upsee.
I'm signed up for April 2!


Feel free to e-mail me at tennsense@gmail.com with any questions or leave a comment. I'll do my best to fill in any information I've left out!

Amy 

6 comments:

  1. oh how incredibly beautiful!!! look at her smile! holding her head up sooo well!!! i will be purchasing for my son ! wonderful!!

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  2. Amy...thanks for sharing. I can't wait to get one for my daughter Audrey! Do you know if Ottobock going to be the distributor in the US or do we buy directly from fireflyfriends.com?

    Cheers
    David

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    1. Hi David,
      My understanding is that you will be purchasing directly from Firefly. There will be more information on sizing and purchasing announced during the webinar. I have no doubt your daughter will have a wonderful experience using the Upsee!

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  4. Yay!! So glad I found your blog.
    -instantkarma

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  5. Amy, this is so special. Thank you for sharing. My 3 year old grand-daughter was sitting with me when I watched the video with Tenny and we were able talk about how special this was for Tenny. Her smile of course says it all. Shyloh asked to watch it again and was mesmerized as he watched Tenny hold hands with friends, dance, play the drums and more. Blessings to you and the family.

    Angie

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