Saturday, March 22, 2014

Moves like Jagger, EFL walk

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!

As always thank you everyone for your support!

Jaggy is sending bubble kisses:)

Sunday, March 2, 2014

"Do you believe in miracles?"

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!