Exactly one year ago, we discovered an awesome new brand called Firefly. Their mission was all about family participation and helping to get SN kids involved in the family. The first product we tried was the Upsee. . .and it was nothing short of amazing. This brilliant device allows Emmy to stand upright without the cold rigid structure of a typical stander. Finally, something she felt comfortable in! Her eyes were opened to a whole new world. . .one where she could see eye-to-eye with her dogs, one where my hands were free to play and interact with her while she was completely supported, and one where we could walk around the back yard together and literally smell the roses.
Next from Firefly, we discovered the GoTo seat. Seating has always been a challenge for Emmy (as referenced in my last post here. The GoTo has quickly become another tool in our arsenal of finding ways to assist Emmy in sitting upright in a way she tolerates. . .sometimes anyway. What's particularly great about the GoTo is how lightweight, portable and versatile it is. We're sure we will continue to find new ways to use it for years to come and hopefully Emmy will learn to like it more.
But what I really wanted to tell you about is the latest greatest Firefly tool we started using less than a month ago and have already come to love. . .the Playpak.
When I first heard about the Playpak, I was excited and couldn't wait to try it. I had always wanted one of the Leckey Early Activity Systems for Emmy, but insurance didn't consider it a "medical necessity" and the $1250 price tag was a stretch for us to do without help. The Playpak is an offshoot of the EAS that is more accessible for families thanks to a reduced cost ($450). It's also lightweight and portable, making it extremely user friendly.
But if I know anything, it's that I know nothing, and despite how cool something looks or sounds, it means nothing until we try it with the princess of our palace. . .Emmy! And, I can honestly say, from the very first trial, we were impressed.
She was very tolerant of it immediately, which is rare. Emmy likes to be held and doesn't do well in any kind of supportive seat (although she is getting better). I think she did well in the Playpak because it's soft (not rigid), and although very supportive, it also has plenty of give and cushion. Although the possibilities are endless for the ways in which you can use the Playpak, we were most enthusiastic to try the supported sitting position. Emmy loves sitting up, but needs tons of support to do it. She's 34.5 inches tall and about 21 lbs. Her head control is minimal. She has trouble lifting her head, can hold it for a few seconds before it either falls backwards or forwards. If she has something behind her head, she can hold it up for several minutes.
The Playpak put her in a very nice position for working on her head control, giving her nice support around her torso and allowing her arms to be free to activate a toy. . .ALL BY HERSELF. She lasted about 10 or 15 minutes in that first trial, which was great considering it was already early evening and she was getting tired (and grouchy).
I did note that I needed to be close by to chaperone what was going on. If her head did drop back, she would get stuck and need a little help to get back on track.
We tried it again a few days later and it went very well! Emmy sat and held a toy (aka wire whisk with bells with the help of an EazyHold support strap) for quite awhile. This was progress, an option that would help Emmy sit up without someone helping her!
We also tried tummy time, which went well as well. However, I don't think it's anything too revolutionary that you can't already do at home with a nice support pillow.
But what was nice is that it was part of one piece of equipment system that you can take with you!
I was also curious to share the Playpak with Emmy's therapists and get their feedback, so we took it to NAPA Center, which was no problem since the mat folds up and transforms into a bag that holds the various rolls, cushions and straps. First we did a sitting position and our therapist had the brilliant idea of using the little blue cushion (included in the Pak) behind her shoulders and head to offer more support. Why didn't I think of that?!
We also worked on a three point kneeling position. One of the rolls was placed behind her feet so she couldn't push her legs out of kneeling. Again. . .that velcro is strong!
Finally, we let Emmy's OT who comes to the house play around with it and now she requests it every time she works with Emmy! Another cool feature is how you can literally put your hands under the mat and move Emmy all around while she's in it. She loves all of the vestibular input.
Although I liked it immediately, I wanted to really use it several times before I wrote a review. Now that we have, I can honestly say we love the Playpak and so do all three of the therapists we have let use it with Emmy. I've gotten many questions from parents of more severely affected kids who have minimal head and trunk control that were concerned the Playpak wouldn't have enough support for their kids. But after seeing Emmy in it thought it might well be an option. I can assure you that Emmy is nowhere near sitting by herself or even holding her head up, and she benefits greatly from this product. As for kids with higher tone and arching, Emmy has arched and stiffened in this and she can definitely recline it when she gets stiff, but the velcro holds tight and I just have to give some cues and jiggles to help get her back into a relaxed and flexed position. However, if she's downright mad and stiff as a board, I have to take her out and try another time, much like any other piece of equipment. All in all, I find this to be a very beneficial tool, easy to use and we will use it for years to come. Just wish we had had it sooner. Thanks Firefly!!!
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