[tri-med] Victor Family update

Hi All :o) 
I am posting this to both ?Family? and ?Med? lists because it does include a
Devon eye update?but there?s a lot of family stuff too :o) PLUS my friends
and family not on my trisomy lists :o) 

 

Devon is doing ok?save for his sleeping issues which I?m hoping to address
with our pediatrician this coming Thursday. No one else seems to want to
help us and somethin?s gotta give!!! He is still wearing his bag gloves full
time and only just yesterday did we start letting him go without his eye
patch during the day?he?s still wearing it at night. We take him Tuesday for
his retinal ultrasound to see if everything is ok in there?retina still
attached, etc. His eye looks good and he seems to be seeing a little better
when he remembers to actually use his eye. So we?re praying that his lens is
still where it belongs and adhering well. I DO have a question though. We
are still giving him the eye/vision supplement which has the very beneficial
things like the Lutein and Bilberry and lots of other stuff. If the Lutein
is stored in the lens of the eye and Devon now has an artificial lens?is the
vision supplement still beneficial for him to be taking do you think? Or are
we wasting 30$ a month??? We will be taking him to the YMCA probably
tomorrow to swim for the first time and I?m going to put goggles on him
(he?ll just LOVE that!!! NOT!!!!)?but hopefully his love of the water will
cancel out the aggravation of the goggles??

 

Nick is soooooo happy to be out of school for the summer!!! Although he is
being rather lazy?typical teen I suppose but aggravating none the less. Laci
seems to bring out the best in him when she?s around. And She just LOVES me
which is very nice :o) They?re like pals/friends?bickering and prodding each
other but kinda cute too. And Nick has loosened up enough to have moved up
to ?cuddling? on the couch with us present?or putting his arm around her or
hugging her. He still won?t kiss her in our presence?but he?ll get there I
think. He?s been very slow moving and shy in many ways?but Laci seems to
appreciate it. Mind you I?m aware all this could just be for show in front
of us?but since they really don?t get to go out much?or really be alone?I
choose to believe they?re sincere. And I know that Nick, having no
experience with dating, really is rather naïve and shy with the opposite sex
:o) Fine with us that he?s not moving too fast :o) 

 

Smoochie is doing k too?although we have been working on a chewing problem
:o) Devon loves her and gets many many kisses. But we?re only just recently
able to actually let them be together some because of Devon?s eye surgery?we
didn?t want her knocking him over or licking his eye or patch. We got a
bubble machine and an outdoor swing for us to sit in and watch Smoochie play
with a ball we throw or chase bubbles. Trooper loves her too although she
aggravates the snot out of him because she?s constantly trying to get him to
play or running under him :o) Poor guy?she exhausts him!!!!

 

Presently, I?m a little loopier than normal for me :o) No comments from the
peanut gallery ;o) My doctor started me on Robaxin and Neurontin this last
Tuesday. It all started a couple weeks ago when I got some info on
Fibromyalgia I sent for. I was reading the description of the type of pain
and all kind of bells and whistles went off in my brain! Here?s what it
says,

 

?Nerves and brain cells can become extra sensitive under certain conditions.
This may lead to extra pain signals being sent. And an increase in the
amount of pain a person feels.(The pain is very real) A person whose central
nervous system has become extra sensitive may feel a type of chronic
widespread pain that is typical of Fibromyalgia and other chronic pain
conditions.

 

The pain may occur as the result of a number of things. For example, viral
infections, trauma or injury. Even exposure to chronic stress. The sleep
problems that go along with fibromyalgia and other chronic pain conditions
may make it worse. And that could lead to even more pain and disturbed
sleep.? 

 

It also says,

?The pain of fibromyalgia can make simple tasks hard. Even something like
washing dishes may all of a sudden feel like too much. Sleeping is often a
struggle too. Fibromyalgia causes physical pain. And this pain can affect a
patient?s social life too. Fibromyalgia can often hamper the ability to work
and engage in everyday activities. Or even compromise personal
relationships. Pain relief is often elusive. And support from friends,
family and the healthcare system may be lacking. Sufferers may feel like
they must learn to live with the pain.?

 

 This sounds EXACTLY like what Joe and I feel! And the reason why regular
muscle relaxers and pain killers don?t touch it. The Neurontin is not a pain
killer, rather it works on the central nervous system and kind makes the
extra signals being sent to pain receptors in the brain lessen so that the
person suffering from the chronic pain begins to feel less pain. When I went
online to see if it was ever being used on Fibromyalgia, I found out that it
IS and has been very successful in many cases!!! SO I at least have some
hope now :o) I also found out that for my insurance company, I actually have
to have tried and failed using the Neurontin before they will try any other
drugs like Lyrica (which I can?t afford even with insurance AND don?t want
to try it anyway because it has nasty side effects). It?s funny really?Joe
and I both had been wishing for the past couple of years that he could be on
the Neurontin again but back when work comp was paying for it there was no
generic and the cost was like 400-600$ per RX?ridiculous!!!! So we didn?t
even bother asking about it! So when Joe?s doctor prescribed it for him
(coincidentally the very next day after I began to wonder if it would help
ME) and we found out it is now available in a generic (it?s called
Gabapentin)?we were BOTH very excited!!!!! With our insurance generics are
only 10$!!!!!

 

I?m to take the Robaxin 4 times a day?it?s a muscle relaxer and it?s what?s
making me loopy. I must say I hope this ?muzzieness? feeling in my head
passes soon?I don?t like it :o( It makes me feel very fuzzy minded, can?t
focus my thoughts?they?re very scattered, a little drowsy?HECK!!! I just
basically feel stoned :o( Again?I don?t like it! I?d never make it as a drug
addict! It must be a stronger relaxant because other ones she?s tried me on
like Flexril and Soma don?t even touch it and they don?t affect me in anyway
shape or form. However?at least SOME of the time during the day and night my
muscles seem a little less tight and tense and painful?so I?m hoping the
stoned part passes soon so I can keep taking it. I DID sleep better last
night than I have in about 3 years :o) The Neurontin takes a while to get up
to therapeutic levels and I have to start it slowly?I was to take 1 before
bedtime for 3 days and then add one in the morning for 3 days (I?m  on my
second morning now taking them), and then add one mid afternoon for 3 days).
This is the drug that helped Joe with the 24/7 post traumatic migraines that
nearly killed him. And his doctor has put him on it too :o) His head pain is
now gone and he has been doing better the last 2 weeks?able to do much more
and his frame of mind has begun to improve :o) He says it takes about a
month to see any difference if it is to work at all?and I must admit I?m
very hopeful because my frame of mind has been in a very dark place lately
(I now understand more fully how Joe must feel hurting all the time). Joe is
also now trying to quit smoking, and he?s going to start going to the
aquatic swim exercise classes. He?s tried now 3 times to go but each time
something?s happened to keep him from going but hopefully next week
sometime??? Hopefully these things will help him??

 

I know that I have often felt like everyone thinks I?m exaggerating (or Joe
is for that matter) and it always puts me on the defensive and both hurts
and makes me mad:o( But it?s hard to explain how badly my muscles hurt and
how weak they feel. For example, right this minute?just to touch or
lift/move my arms, neck, and shoulders/shoulder blade region from about the
middle of my back all the way up to the base of my skull?hurts so badly it
makes me nauseous :o(  And of course the bulging disc in my lower back and
my wrist issues seem even worse because of the heightened pain everywhere
else. Even the muscles in my legs feel weak and sensitive :o( The same is
true for Joe with his pain. Last weekend we finally had mom, Donna, Albert,
Laci, Brett, Alice and Autumn over to have a big Elmo cupcake cake to
celebrate Devon?s birthday (kinda been putting off because I just couldn?t
deal with the thought of everyone coming over and because of Devon?s second
surgery as well). That same morning Laci, Nick and I went to get Nick?s
senior pictures taken. We had to walk/run all over DeLand for the
environmental/outdoor shots to be taken (some with Trooper) and then we went
back to the studio and did the other shots. And by the way?everyone who
would like to receive a picture, please send me your physical address so I
can send you one when I send graduation announcements next spring :o) That
was from 8AM to about 11:00. Afterwards we immediately headed to WalMart to
pick up Devon?s cake and some sugar free cookies (Laci?s diabetic) and then
home where I had to decorate the kitchen (Laci helped while Donna watched
Devon). As bad/mean as it sounds, I was so relieved when everyone left (Laci
stayed and watched a movie with Nick but she?s fast become a part of our
family and I don?t mind at all when or how often she?s here). I asked Nick
and Laci to watch Devon (he was sleeping on the couch by then) so I could
get in the hot tub (hoping it would relieve some of the pain). I got in the
hot tub and while it felt good?it did next to nothing to help with the pain.
And soon I had to dive for the edge of the tub to throw up. I then just sat
there and bawled which is when Joe found me and felt utterly helpless to do
anything but rub my shoulders and get me some water. Of course I cleaned up
and put on a smile to go back in the house to watch the rest of the movie
with Nick and Laci. And that?s kinda the way it is?I/we just keep
going?trying our best to deal with it and not show it all the time?nearly
impossible :o( So every little while, I/we just kinda blow up and take it
out on everyone around us for a while :o( 

 

It truly sucks!!! (sorry if the use of this phrase offends anyone) And
sometimes it just gets to be too much for Joe and I too handle?that?s when
the dark thoughts start. I started feeling that way a little while back
because I just can?t get away from the pain no matter what I try! Heck, I?ve
lost 40 pounds over the last year and a half and still it doesn?t help.
Although I do feel a little better about the way I look. I have been trying
to work out at the Y?pushing myself to go and exercise through the pain
knowing it will hurt even worse for the days following :o( Keeping my
muscles stretched out is supposed to be good for me.

It?s all very depressing for both of us?and I?m sure it gets old for friends
and family to hear us complain too?especially when some obviously think
we?re exaggerating and just wimps :o( 

 

One reason I was desperately trying to find something to help AND NOW?was
because Devon and Donna and I are booked to go to Colorado in July to the
SOFT conference and the thought of traveling and being more active ALL DAY
with Devon just overwhelms me and I?m honestly not sure I can handle it.
Hence the reason I?m so hoping and praying that this newest medication combo
will work!!!!! I simply can?t take it much longer. AND Joe needs to find
some relief because Joe and Nick need to be taking care of Devon on Fridays
when there?s no summer rec and then also when summer rec ends August 1st.
Soooooo, he needs to be in a good frame of mind so that he doesn?t take it
out on Devon or Nick and might actually get to enjoy his times with them
more :o)

 

So?there you have it folks?my update :o)  

 

 

 

Love,

Penny...loving & devoted wife to Joe, the best husband in the world...mom to
Nick (17 yrs old...lover of Fishing, Dragons, Turtles, WofWC,
RollerCoasters, Chocolate Icecream w/ Ovaltine sprinkles, Devon (13
yrs...lover of Barney, Blue, Nappy ol' Bear w/dreadlocks, Elmo, & food in
general. Full trisomy 13 w/balanced translocation 5 and 13) , and Trooper
the Wonder Dog...our 10? year old yellow lab adopted from FL Lab Rescue
12/13/02 :o) And Smoochie the goofball Basset mix (1 yr old and a rescue as
well). 

Please visit the webpage my wonderful friend Karen made for me on our
trisomy listserv at:

http://www.trisomyonline.org/victor.html      

AND...visit Noah's Never Ending Rainbow at:
<http://www.noahsneverendingrainbow.org/> www.noahsneverendingrainbow.org 

AND...http://livingwithtrisomy13.org/album9.htm

AND http://web.coehs.siu.edu/Grants/TRIS/

AND my new slideshow at: 

http://www.onetruemedia.com/shared?p=3e291611cb644c422ff6bb
<http://www.onetruemedia.com/shared?p=3e291611cb644c422ff6bb&skin_id=402&utm
_source=otm&utm_medium=text_url>
&skin_id=402&utm_source=otm&utm_medium=text_url

"Faith sees the invisible, believes the incredible & receives the
impossible"

 


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

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