My Child and RSD (Reflex Symapthetic Dystrophy)

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My Child and RSD (Reflex Symapthetic Dystrophy)

(Reflex Symapthetic Dystrophy) Thankyou all for comming to read & please take the time to see the new RSD Sharing and Caring Support room that's now open and also I'd like to say thankyou to all for the wonderful support you've all giving. Besure to checkout the new things being added to my sites!!

(Type a title for your page here) Time 12:16 PM August 19th 1999

Welcome back my friends! It's been a really busy summer for us! First thing Jen wanted to do after getting out of the hosptial was to see and play in the ocean, and that's what we did! Took her to see the ocean. She had so much fun although I was so afraid of letting her into the water for fear of being stung by a jelly fish!! But, did'nt happen and all had a blast. Well, Jen still continues to amaze me! She still continues to be pain free. She just started school this week and is doing GREAT! Really thought she would'nt be attending school this year but BOY was I wrong! Made me feel so good to see her RUN up to the school on the 1st day! She does'nt like to talk much about what happen to her, guess it will take time. I just continue to explan to Jen that bad things happen to good people only to make them stronger for the future and we cant ask "WHY ME" Lord knows I wish it never had happen but I have to feel good will come from it. Although out family has suffered alot this year and the year is'nt over yet, we still have many challenges to face. For one, this week we found out we may be getting transfered do to my husbands job leading us possiably to Virgina. Mention this to the kids, they did'nt seem to care for that idea, but who knows, will see what the rest of the year brings us. Problem now is we are always haven our guard up regarding Jen bumping herself!! She seems to be very leary of this as I am. Rick says I baby her tomuch, just dont ever want to see a reacurrance of RSD comming back. Mabey I should let her just be "NORMAL" what ever that might be, geezz, these days I'v learned not to ask for ANYTHING and behappy for what I have.

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IMPORTANT NOTICE!!! Time 3:10 PM June 23rd 1999 (Type a title for your page here)

I'M FINIALLY HOME! Before the news I want to say WHAT A TRYING TIME!! Got Jen to the hosptial, Jen using a cane, Jen made it to the elavators then Jen handed me the cane as my husband and dad had no choice but to help Jen in the hosptial, her legs finially gave out do to pain, so we made it just in time. Jen's doctor has been TERRIFIC and stayed right on top of Jen's RSD ALONG with making EXCELLENT desions NEVER leaving her site! The pump was inserted and took EXCELLENT! after removeing 10 days later her systom failed and pain returned, BUT after time, I'm NOW  happy to say (now here's the good news) Bare with me it's kinda long, Jenny is IN REMISSION and we ALL want to
thank you ALL for all the love and support and prayers most of all. We
except this as nothing more than a mircle!!! Jenny will be leaving the
hosptial tomorrow to return home. On a scale of 1 to 10 her pain is now at
O rate and IS remaining!!!!!!! We realize that this COULD come back to haunt us again and if it does, will hold strong again with the same faith as the first time! So much of our love goes out to all and
will not be forgotten. My site WILL be continued to be kept up as
promissed for even though her pain is over others is not. More to be added
including pictures of Jen's stay in the hosptial and the surgery she had
incase others wondering what the pump looks like or has any questions of
this proceedure. I want to say again to all that ALL prayers were felt and
the same will hold on this end, each patient living with RSD will continue
to be on top of my prayer list and I STILL plan to form a public RSD
chronic pain support group for people to attend in person. What happen to
our family was was tragic, emotionaly and finianly but happen for a
reason. Remember to ALWAYS keep your faith and dont and DONT GIVE UP HOPE nor ask why, I as a
parent KNOW how hard this is to live with a child in such terrific pain
and can offer NOTHING BUT MORE PAIN , this is hard. I as a parent KNOW how
hard it is to sit by and watch your child go from one weekend of running &
playing to walking on a cane and falling down in pain and having to give Jen such narcotics that often a grown man could'nt endure or become totaly addicted to! I am happy to say she has NO withdrawles from the pump nor from the huge amounts of narcotics given for over 3 months. Now I as a parent and other parents living with chrildren with RSD or the patient with RSD himself MUST 
remember one MUST have faith and MUST NEVER give up HOPE!!! HOPE IS THE KEY
AND FAITH IS THE KEY AND NEVER ASK WHY DID THIS HAPPEN TO ME!!!! Instead
except the wonders of God that he's given you in your life NOMATTER WHAT THE PAIN he still is Lord and still hears all. Please never give up! This is what Jenny gave to me as a promiss and
at the same time telling me she could'nt go on in this pain. But STILL
said in the same sentence, I WONT GIVE UP!!! Once Jenny said I HATE MY PAIN AND SAID IT TO THE PAIN and BELEAVE there is a God and TALKED with him, we started to see less & less pain to the point of O pain. I have no dought will have
MORE battles to face 1 getting Jenny to walk correctly again will take
time and a long recovery. BUT SHE'S WALKING PAIN FREE AND PAIN FREE IN HER
ARMS. This only happen do to the prayers that were STRONGLY felt from
all!!! And excepting NOTHING more! God bless you all from all of us! (I copied pasted that from my other posting due to it being so long so if it looks outta whack forgive me! Mabey I'm a WEEEE bit excited LOL) ANYHOW yes this ordeal was and has been HORRIABLE but happen again for a reason. Jen still has a long road to recovery to straighten her legs out and to teach her to walk correctly again but will happen with time! BUT SHE'S NOW PAIN FREE! PRAISE GOD! I owe so much to all of you for the prayers and I owe so much to God for listening. WHO SAID MIRCLES DONT STILL HAPPEN! Today is my first day myself of being able to up and walk for I was placed in the hosptial for a very short time due to exaustion and dehydration but am 100% better now. I want to thank Lamar for being there 100% for our family and staying traveling 1000 miles by plane to be there for Jen and my family! WE LOVE YOU LAMAR AND WILL NOT FORGET WHAT YOU'VE DONE FOR US!  CORMAN AND PEACHYKEEN!! I thankyou BOTH from the bottom on our hearts for the money and gifts you sent, you have NO IDEA how much will need it for equipment for Jen to recover with. Will be spent wisly! That money ment SO much to us and was a FIRST for us to recieve such a gift as for from Lamar from what he sent to us aswell in the way of money. Thanks to you too we now have enough money to buy what needs to be bought for Jen's equipment inorder to have her legs back to walking right again. Jenny was so touched and so amazed that so many people cared and those that she did'nt know would send such support let alone gifts of money and things as yall did for her, you'll NEVER know the impact of spreading goodwill what this did for Jenny and how this impacted her life, she'll never forget this as she told me in her words comming from a 13 year old. Remember the rewards are much more comming from God of those that care and give gifts of the heart, Our family loves each of you and sends our deepest thankyou for your kindness, PLEASE KEEP IN TOUCH and again my husband and I both thankyou from the depth of our hearts and such hugs we lend to you. Lookout for more updates and pictures again from Jen's hosptial stay and more to come! HUGS!

Time 3:12 PM May 24th 1999 (Type a title for your page here)

I know, you've been wondering where brat's been, & how Jen is doing, well, Jen's has'nt been doing so well. Her breathing has been effected now, which leaves her with (sometimes) either passing out, or struggling for air. Took Jen to the dr today at 10am, no luck there. The kinda dr we need, this hosptial does'nt provide. So, we put in a call to Houston along with the help of Lamar, & therefore, were waiting for a call to see if they'll except Jen. This hosptial is outta town, but that's ok. Jen now has RSD in both arms/neck/back/chest. Took jen to the lake last weekend, went in with'er to help her play in the water & keep an eye on her. She loved it! was so good for her to get outta the house! Ricks gone up to get a special bar to place in the shower wall for Jen to grip in the event of her passing out or slipping, due to her eyesight being effected from the meds. So many changes were haven to face as Jen. Mailman just left with a package for Jen, was the barbie doll (spice girls) Lamar had sent'er. She was overWHELMED with joy!! LOVE to see those smiles! Jen's nails are getting so much longer now, hate to see that, knowing it's due to the RSD therefore the next stage will be brittle/cracking & nailbeds to be effected as for the hair, the same. But, she's enjoying them being so long. Dont have the heart to tell'er it's only temp. I think I'll need to order something for Ricks nerves, this seems to be taking it's toll on him. He wants to help so much, but feels little he can do. Were so furstraighted trying to find a good dr, & one that understands. But, least things are moving now, cant wait to hear from Houston! They say 24/48 hrs. So, will see.

Time 9:07 AM May 28th 1999 (Type a title for your page here)

Last day of school. My son Josh is so excited! Looking forward to playing & all the activites. Jen's looking forward to spending sometime in the hosptial this summer in hopes of finding some relief from pain. This is killing me. Jen's teeth are now effected with pain. Bought some art supplies for her. Trying to keep her hands moving long as possible. Noticed her using both hands to hold a tiny paint brush. She tries so hard. She's making a gift for Lamar to send off. She takes such pride in her work even with all the mistakes. I told'er that it's the mistakes that make perfection & her's is a masterpiece. Still waiting on a call from Houston. Will it ever come! Is like walking on pins/needles. Talked with Rick after his return from a business trip. After being home for a few min. Was seeing him in tears over Jen, he's taking this so hard. I worry so much for him and depression as Jen. Jen's showing lots of signs with depression as to be expected. Course none of the meds are working. Were so worried bout leaving her alone. She often get extremely close to the fainting with pain. Picked her up already once in the shower for this. Her breathing is getting worse. Will this ever end. Is so hard to find people to donate equipment for Jen. Were seeking a handgrip for the tub as well as a moveable stationary bike for her. It's so important to keep her moving. Were also seeking a puter for Jen. This is the only enjoyment she looks forward to. Jen uses her left hand to peck away. But it works for her. Finding people wanting to give with there heart well, were only finding peeps wanting a arm/leg for things. Is hard to find gen. heart giving peeps for children. But God will provide.  Faith is all we have left.

Time 8:09 AM June 4th 1999 (Type a title for your page here)

Time 7:11 AM June 8th 1999 (Type a title for your page here)

HAVE GREAT NEWS!!! FINIALLY found a terrific doctor today! Someone that will listen to Jen & I . Were so impressed with this doctor! He actually listened! Also found out this Dr. has been discussing Jenny with a team of Dr's. YESTERDAY! BEFORE EVEN MEETING US! Can't BELIEVE it! This Friday Jen will be going in for her 1st epidural cathater (pump) Will be leaving the house at 6AM and surgery will start at 8am. Jen's nervous. I can tell as we all are not to mention the hopes we have of this working! Course there's that real possibility it won't throw her into remission, but faith can carry one along ways. Jen knows all the above! This epidural cathater will be placed in for 2 weeks. If it does'nt improve her condition, then on to the next step! Considering Jen's already using a cane to be able to get around if we had'nt found this Dr, I'd give her another week and defintely a wheel chair would be next. Lamar will be leaving this week to be here for the surgery. Can't wait to meet him! Jen's so excited!! I'll be staying with Jen at the hosptial for two weeks, all I know is hope my BACK holds out considering I'll be sleeping on the floor or a chair they may find LOL no biggy!  Nother good thing, THEY HAVE PUTERS FOR THE PARENTS TO USE saw that & said YES!!!! NOW they won't have to worry about ME going into withdrawals LOL. Bad thing, I noticed this teenager in a wheel chair while waiting to see the doctor. Over heard the docters worken with him. He has RSD. now I'v been scared before and was scared when Dr was telling me of this surgery Jen will be having done Friday. BUT THE LOOKS OF THIS TEEN TRULY SCARED ME! This child was so swelled and the color of purple was deep deep purple, almost black. Is much different than reading bout it or seeing pictures off the net. Again, THIS HAS GOT TO WORK FOR JEN!!

It's important to me that people care and is the reason for this open book diary. I'm asking all to PLEASE forward this page to a friend in hopes they'll do the same, then please take the time to sign the guestbook so I know SOMEONE cares and is keeping up on Jen's condition. Thankyou bunches
E-mail me if you have any questions or comments or would like to send a letter to Jenny

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