Tuesday, December 16, 2008

DME Equipment


We've tried countless pieces of equipment over the past 12 years to not only transport Andrew, but also increase his ambulation, muscle strength and flexibility, access to the out of doors, and overall postural support. Today, our DME representative is visiting to talk with us about beds, since Andrew is getting too tall for the twin-from-a-bunkbed-set he's currently using.

It's cumbersome to research, pay for, recoup insurance and the like; however, in our case, the benefits have always been worth it. Except for the Rifton Pacer walker, which was simply too difficult for Andrew to propel, given his limited lower range, each of the following things has been helpful at some extended period of Andrew's development.

Hart Walker (pictured above with Mr. Christmas), Rifton Prone Stander, Permobil power wheelchair, Quickie push chair, Convaid travel chair, ceiling list from Patient Lifts of New England (now runs from Andrew's bed/where we change him) into toilet and shower, Rifton shower chair (we no longer need this now that we use the lift), Rifton tub chair (we later used this in a canoe even!), Freedom Concepts bicycle, Cascade DAFOs, Tumbleforms wedge (gives Andrew "tummy time" while watching TV so he can develop upper body strength and head control), "Special Needs" Baby Jogger, Tumbleforms seat (we use this on our motor boat), and probably more I'm forgetting. I'm also currently investigating a new stander and bed, as I said, so let me know if you have any suggestions, please.

Happy shopping!

Monday, December 15, 2008

Wednesday, December 3, 2008

Taking Care

I'm home today with a sick Andrew. Thankfully, it's nothing more than an upset stomach. I just thought he deserved a day of rest. As the primary caregiver for our family, I need these every now and then, too. Additionally, we've grown to rely on the myriad of "helpers" at our home who help lighten the load of caring for a child with such extreme physical limitations. Solving the caregiving puzzle is a very personal thing. Some families can rely on grandparents or other relatives to help out. Others require more skilled nursing care than we do and work through home health care agencies. At various points in Andrew's life, we've hired OT and PT students, au pairs and just kind and loving "babysitters." Now that he is older, our needs are more focused on activities of daily living vs. childcare. We take part in a CT DSS program called the Katie Beckett Home-Based Medical Waiver program (800-445-5394). In our case, a wonderful woman comes in each weekday morning and night to help Andrew get ready for school and then bed. Katie Beckett helps offset the cost of caring for a child within the home, as well as other home-related expenses. Each state offers something similar under various names. It's definitely worth looking into.