It's this time of year again. We are participating in the annual energy for life walkathon for Jagger at Centennial park this coming Saturday March 29th at 10:30 am. Just like last year, our team is called "Moves like Jagger." I know it seems silly but Jagger has a movement disorder (among many other things) caused by his mitochondrial disease.
Here is a link to our fundraising page. Please sign up and walk with us if you are in town and interested!
No I am not talking about a cure or even a genetic diagnosis which we still don't have. I am simply referring to the fact that after 4 months,we finally received the growth kit for Jagger's wheelchair. I am not really sure what took so long since this kit essentially is just a bigger seat cushion and side support arms but what the heck, we finally have it. Probably just in time to trade in the wheelchair for a bigger one.. Lol. The company we use is NuMotion and they claim they have "sensational customer service". I don't know if I should laugh or cry about that. After 20 phone calls, numerous emails, calls to supervisors and the central office it only took 4 months to get the pieces for the wheelchair. Apparently I don't have a critical ill child to take care of and a full time job! But we finally got the stuff so hallelujah!
In turn, we had asked for a new feeding pump because ours broke and hospice doesn't carry the one we want. So we got a new script from our GI, a week later I decided I wanted a super mini backpack as well. So called in the request to our GI and supply company (different then the chair). While I was at it, I requested a completely new pump bc of warranty issues. Within a week I had a new pump still in the original box with instructional DVD, mini backpack for the pump, and feeding bags which we didn't even request.
I almost fainted when the tech delivered all this stuff with a week of me asking for it. Lol.
Let's just say company A can learn a lot from company B!