[tri-med] Well...I've done it now :o( and update...

Hello Everyone :o)
As you all know we had our big blow hard Charley hit here a couple weeks ago 
and we really lucked out at our house...just a cabillion branches and twigs 
down and one big tree. My brother was going to charge us 200$ to take it down 
and cut it up...and clean up a palm tree...well...we can't afford that even if 
it IS a good price (I have no idea if it is or not?). When I was talking about 
it at work, my boss said it would only take 15-20 minutes and he'd do 
it...would be fun...loves playing with his new chain saw...it's a man thing I 
guess?? He came that evening and took it down and cut it up in like 20 
minutes...nuttin'to it :o) Next Nick and I set about nipping branches and I set 
about sawing the ones my boss missed and then we hauled them up to the front 
curb in our wagon. We've been taking out time...just doing a little here and a 
little there. Well...the end of last week I decided I was going to go out and 
nip and cut the rest of it to make them manageable enough for Nick to put in 
piles and haul out as he could. Let us just say I must have over done it a twee 
:o( I strained my lower back :o( It's been very tender...and I have been being 
as careful as possible...not lifting Devon...just moving him back on his dining 
room chair or the potty...making him walk to bed even when he's sleeping (no 
mean feat). Mid week it started getting more tender...probably being on my feet 
all day at work on concrete I'm guessing??? Anyway....by last night I could 
hardly bear weight :o( Doing dishes while propping myself on my elbows while I 
washed was a real adventure as was changing Devon and walking him to bed. I 
thought laying down and going to bed would help...I prayed to God to help me as 
I lay there last night...caring for Devon and missing work are both rather huge 
problems. This morning when I woke up I needed to go to the bathroom and I went 
to get up and could not....new experience in pain :o( Joe brought me an icepack 
and a step stool and a cane and it took me like 45 minutes to finally get out 
of bed...I seriously thought I was going to have to call 911...but finally I 
managed to manouver myself out if bed. Nick had to get Devon on the bus...not 
fun since Devon was very upset and would not listen to him :o(  And I feel 
utterly useless...I can tell you I won't be able to sleep in a bed for a 
while...and work is out if the question today :o( So long full paycheck :o( I 
called my mom already to reserve a taxi...as Joe has accupuncture and if I lean 
on him physically I'll hurt him...can't actully lean on mom either but at least 
she can drive me...wish me luck I can get into see the doctor and maybe get 
some muscle relaxers or pain meds...maybe both...and then to a 
chiropractor...which I'm NOT looking forward to :O( It's going to hurt!!! I 
feel like a granny using a cane...truthfully a walker would be better.
On another note...I spoke to Jan at Family Network on Disabilities of FL...she 
asked me to write an article for their newsletter and I did...finally...but 
while I had her on the phone I asked her if she had any ideas for resources for 
the Vail Bed and I explained whats been going on and about the fundraiser and 
the denial from FHCP. She told me to call this man there named Tom 
Nurse...didn't tell me why she thought he could help...but told me to call him. 
Finally got him yesterday...NOW I know why she wanted me to call him! He told 
me not to beat my head against the wall with an appeal...he said if I have an 
RX and letter of medical necessity and documentation I already have everything 
I need to make medicaid buy it for him. He told me to get my med waiver 
coodinator involved...even though medwaiver won't buy the bed she can lay 
ground work with medicaid...submission etc..he told me to call Devon's CMS and 
tell them Devon needs his case manager to got to work for the bed and to call 
Blind services and get them in on the act as well. This guy is a power house of 
energy lemme tell ya!!! He has a 10 year old daughter with CP and knows what 
it's like to have to fight...he had to fught for a 35,000$ wheelchair for his 
daughter....it took 10 months but medicaid got his daughter the chair. He ended 
up going to an advocacy group...which he gave me the number for and they fought 
for him :o) He also told me I would do well to contact another organization 
that would cousil us on how best to protect Devon's SSI and medicaid so that we 
could possibly drop insurance on him. This is what he did with regard for his 
daughter...and I'd wager he still gets SSI for his daughter and she's on 
medicaid. He said Devon is protected until he's 18 and then it's a new ballgame 
anyway...if Devon lives that long...his words not mine :o( He said let's face 
it...Devon...and his daughter have already outlived their life 
expectancies....he said our main goal is to get them what they need NOW...and 
keep them happy and healthy while they live. So...I will be in major pain all 
day...and I may not be able to get around very well presently...but I will not 
be idle...I will be on the phone between going to the doctors I hope :o) Wish 
me luck...and wish me luck our bills and budget can all be met with me missing 
work...I hope I can go back Monday???
Jayne...I still need you to try and get me the study/documentation from Nick's 
Neurologist pertaining to Trisomy kids and melatonin production if at all 
possible :o)
Thanks...wish me luck...
Love, 
Penny...loving and devoted wife to Joe, the best husband in the world...mom to 
Nick (13 yrs old...lover of Yu Gi Oh, RollerCoasters, Chocolate Icecream with 
Ovaltine sprinkles), Devon (9 yrs...lover of Barney, Blue, Bear in the Big Blue 
House, Elmo, Stuart Little, Teletubbies and food in general...Full trisomy 13 
w/balanced translocation 5 and 13) , and Trooper the Wonder Dog...our 6 or 7 
year old male yellow lab adopted from FL Lab Rescue 12/13/02 :o)
Please visit the webpage my wonderful friend Karen made for me on our trisomy 
listserv at...
http://www.trisomyonline.org/victor.htm 
AND...Devon's moment of glory in Exceptional Parent Magazine...
http://www.eparent.com/familiarfaces/ffaces_4_01.htm
AND...see our 3 handsome boys on FL Lab Rescue's website at:
http://www.labradorrescue.net/success/index.html
Love, 
Penny...loving and devoted wife to Joe, the best husband in the world...mom to 
Nick (13 yrs old...lover of Yu Gi Oh, RollerCoasters, Chocolate Icecream with 
Ovaltine sprinkles), Devon (9 yrs...lover of Barney, Blue, Bear in the Big Blue 
House, Elmo, Stuart Little, Teletubbies and food in general...Full trisomy 13 
w/balanced translocation 5 and 13) , and Trooper the Wonder Dog...our 6 or 7 
year old male yellow lab adopted from FL Lab Rescue 12/13/02 :o)
Please visit the webpage my wonderful friend Karen made for me on our trisomy 
listserv at...
http://www.trisomyonline.org/victor.htm 
AND...Devon's moment of glory in Exceptional Parent Magazine...
http://www.eparent.com/familiarfaces/ffaces_4_01.htm
AND...see our 3 handsome boys on FL Lab Rescue's website at:
http://www.labradorrescue.net/success/index.html
                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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