[tri-med] Brace yourself...this is a long one folks :o)

Hi All :o)
For the first time in what seems like forever...I have time this early evening 
before Devon eats dinner...heck before we all eat dinner to update everyone on 
the chaos that has been our lives recently.
I don't even know where to start??? Lets see...Joe was supposed to have his 
mediation back right after Hurricane Frances to cover the request for the EMG, 
the ancient and ignored request for acupuncture, and the nerve blocks...because 
it had to be canceled...our attorney met the w comp attorney and discussed what 
they'd hoped to accomplish at the mediation (it would have cost w comp at least 
1000$ AGAIN to pay for our attorney)...Matt outlined what we needed...all was 
granted...how stupid is this I ask you??? couldn't this have been done 5 months 
ago when the EMG was first requested...or maybe a year and some months ago when 
the acupuncture was requested??? OK...fast foward...the EMG was scheduled...but 
then Hurricane Ivan came through...office closed..EMG canceled. EMG rescheduled 
for this last Monday...but obviously someone peed in Mother Nature's corn 
flakes and she sends Florida ANOTHER hurricane...we spend the entire weekend 
inside...good news...we survived..THANKYOU JESUS!!! However...on Monday EMG is 
canceled...again :o( Now you must understand that if the EMG does not happen 
that the nerve blocks scheduled for Thursday (today) cannot take place and 
neither can the appt with the Neuro Surgeon scheduled for Friday...it's like 
dominoes :O( I could hear the discouraged note in Joe's voice Monday...Monday 
night however, Leslie calls and says the EMG is ON for Tuesday AM...WAHOOOOO!!!
Joe took himself to that :o)
Now...I need to jump around a bit at this point. You all know the struggle with 
the bed for Devon yes?? Well...not for the first time...at least 3 people (in 
the know) said something to me...when they found out that I had primary 
insurance on Devon...words to the effect, "geez if Devon were on straight 
Medicaid he'd have his bed already!!!". In the past I talked to Joe about 
dropping primary insurance on Devon, putting Nick on FL Healthy Kids (premiums 
are according to income...and I just found out that if he's accepted his 
covereage would be better than what he's had PLUS he'd have dental and 
vision)...but I was scared to drop Devon for fear that I could never get him 
insured again if ever he lost his Medicaid (if I lost his SSI). I could never 
get my questions answered to my satisfaction. And then recently when I spoke to 
Tom Nurse at Family Network of Disabilities of FL (Thanks Jude...you're the one 
who posted the resource originally a couple years ago) about the Vail bed 
dilemma...he said that Devon would NOT lose his Medicaid even if I did lose his 
SSI because Devon is disabled and until the age of 18 is automatically eligible 
for ?????? several initials beginning with letter "E"...still I was afraid. I 
needed to know that if going straight Medicaid did not work out that Devon 
could again be covered through whatever insurance I have without it requiring 
an act of God....or if it would be impossible as I had been told more than once 
before. I started asking a while ago...to no avail...finally...it was getting 
down to the wire...my insurance was up for renewal TOMORROW Oct 1 and that's 
the only time changes can be made to the policy ie: individuals dropped or 
added. I made calls again on Monday...unfortunately because of Hurricane Jeanne 
(are ya beginning to see a pattern here?)...everyone I tried to call was 
closed. I also tried to call FL Healthy Kids because open enrollment is Sept 
and Jan only I read somewhere...and I mailed it...but would it get there in 
time...or was it too late already...would I need to wait until Jan?? They're in 
Tallahassee...phones were down...because of Hurricane Jeanne (there's that 
pattern again) :o( At this point I'm thinking maybe Arizona would be a nice 
place to move to??? Oh well...I mailed it...must give it to God and pray. 
NEXT...I called Samantha...my health insurance agent...she was a last resort 
because when last I ask her this question/s...she didn't know...could only 
guess. This time when I asked her...she KNEW...she said "oh sure...not a 
problem at all...as long as Devon has had uninterupted coverage...even if it's 
Government paid for (at this point she says I think?)...he can be added again 
when your policy is up for renewal again...but lemme call FL Health Care and 
double check for ya...I'll call ya back." YES!!! She called me back and saif 
that it would NOT be a problem to get Devon back on my insurance should I 
decide to!!!!!! This just made our decision a whole lot easier!!!!! NEXT...how 
much would it be to add Joe...he's been without coverage for years...and I'm 
constantly worrying about him...PSA blood tests, funny looking sun spots on his 
arm, cholesterol check, physicals....what if his appendix bursts or if he's in 
a car accident??? I would feel alot better if EVERYONE had coverage!!! She gave 
me prices...it's lower than for me and the boys...even with premium for FL 
Healthy Kids for Nick. So...I went down and signed paper yesterday for the 
boys...needed to talk to Joe first and make decision and get back to her today 
about adding him. I feel guilty in the sense that I always felt like I was 
doing the responsible thing keeping Devon on my insurance...and back when I had 
the PPO (not the HMO)...he had his services through Childrens Medical 
Services...they bought his Durable Medical Equipment usually with no 
problem...CMS handled all his specialists...even set up his appts (call me 
lazy...but 1 less thing for me to do was nice...and we always liked the 
doctors...cept for the nasty "Petey" doctor). Having Devon on straight Medicaid 
seems like I'm shirking...but he had better care (the CMS and docs were all 
Medicaid when we had the PPO...but my PPO would pay 1st and they accepted 
whatever the ppo paid). This Vail bed...and the situation with the specialist 
for his ears kinda put me over the top though and I did it...please don't think 
I'm useless :o( As of tomorrow Devon will be straight Medicaid...I already know 
we fall well under income guidlines for Fl Healthy Kids...I just wish I could 
have found out if they'd still consider Nick this month...but the good news is 
he hasn't had need of a doctor in years (tempting fate I know...and it scares 
me)...and we only need to wait til Jan if not accepted this month. If we do 
have to wait til Jan I'll be finding EVERYTHING out ahead of time....barring 
hurricanes of course :o) Before I thought that FL Healthy kids was only for 
families that qualified for AFDC or food stamps...and we don't...so I thought 
why bother? BUT...we DO qualify...unless I misunderstand something...and I 
don't think I did. ALSO..after speaking to Joe about it...he says if I put him 
on my insurance he will get check ups and blood work and such...so I DID add 
him :o) I also called and asked if Dr Thorpe was still practicing in 
Daytona...she LOVED Devon...still checks on him even though he hasn't been her 
patient since we had to switch to the HMO like 5 years ago!!! She IS...and we 
will probably switch to her even though we like Dr Bell alright...Dr Thorpe is 
mor proactive than even he is!!!!
NOW...Next week I have to tell everyone that Devon is straight Medicaid...and 
get going on the Vail bed...the bain of our existance :o) I already called his 
CMS case nurse (Kathy) and she has already started the ball rolling on her end. 
AND while all this has been happening...last week Gary and Bob...my boss (Bob) 
and co worker (Gary)...took in a very large job from FEMA...not normally a 
problem...but hey...who knew a hurricane was coming AGAIN!!!!! They doubled the 
order from 30,000 carbonless forms to 60,000...for a grand total of 75,000 
impressions/sheets...its 5 part carbonless paper. BUT...lets not forget about 
the DeLand High School ffotball program...also due out this Friday...and not 
even typeset yet...because of all the school closings they didn't get us all 
the material....AND the Waterford Home floorplans...very upscale houses. And 
lets not forget Joe's 3 appointments...AHHHHHHGGGG!!!!!
Paper for the FEMA job came Monday mid morning..started it lunchtime...got 
20,000 sheets run. Went home at 3...got Devon bathed and fed and ready for 
bed...left him sleeping with Nick watching him and Joe supervising...went back 
to work and ran another 5000 sheets. Tuesday...boys back in school...yahoooooo 
:o)...Ran 25,000 more sheets of FEMA job...Gary ran 20,000. I left at 3...went 
home and got Devon off the bus...bathed him and fed him and got him ready for 
bed...waited til he was snoozing again and went back to work again...ran 
another 5000 sheets (the last 5000 sheets didn't come until courier brought 
them after I'd left that afternoon). I went in Wednesday...ran the floorplans, 
and some other stuff...and an hour before I left at 3...the football program 
finally came out to proofread. I spent the last hour proofreading...titilating 
stuff...NOT :o( Went home..got Devon off the bus...got him fed...made 
dinner...got Devon ready for bed and snoozing and left for work again...this 
time for 2 hours of exciting proofreading :o( This morning I went in...ran a 
"HOT" job for an impatient attorney and left at 8:45 to pick Joe up and take 
him for nerve blocks in Altamonte....I thought I'd be back by noon...Joe 
staggered out with help a little after noon...I got home at 1 and got Joe back 
in the house...poor man had to use the bathroom like nobody's business!!!! I 
was also a basket case because I hadn't been able to call Samantha at the 
insurance co. and tell her definitively to add Joe...I did that and took off 
for work...ran 6 sides out of 26 (NOT GOOD) of the football programs...and left 
again to go and get Devon off the bus...no way was Joe going to be in shape to 
get him off...although he's not doing too bad at the moment. GOOD news 
though...Gary just called me and told me I don't have to go back...he and Bob 
finished it....WAHOOOOOOOOOOOOOOOOOOOOOOO!!!!!!! I'm so pooped!!!!!  And best 
of all it's almost over!!!!!!! I even get to go out to dinner tomorrow or the 
next day...a belated birthday meal :o) ...unless another hurricane comes :o)
I'm truly ready for some boring...uneventful days...but alas...we're about to 
see if what I've been getting told about the straight medicaid thing and 
getting Devon his bed is true...one way or the other he's getting his bed 
people!!!!! And then of course Christmas is coming...and I have hardly any of 
my shopping done...a couple small things for Nick...NOTHING for Devon...and 
don't have a clue what to get him??? Joe's easy...:o) Just gonna have to put it 
on layaway...but soon!!!! One major dilemma at a time....
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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