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

I am going to a prayer group this morning and I will put you on the top of my 
list!  In fact, I will concentrate on "special needs families" . . . Get 
better!!!!
Penny Victor <pvictor@xxxxxxxxxxxx> wrote: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 t
o 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 i
t 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




Nanci - Wife to Mike, the ever patient one . . . Alicia, 20, nursing student . 
. . Shani, 14, homeschooler, biggest helper . . . Soleah, 10, Trisomy 
18M--always teaching me . . . Corey, 2, my boy-wonder!


Romans 5:3  . . . but we also glory in tribulations, knowing that tribulation 
produces perserverance; and perserverance, character; and character, hope.

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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