I spoke too soon in yesterday's update. This morning Jimmy woke up crying and spasming at 6:30. Im just sitting here wondering what kind of a day it will be.........I gave him his meds and they take about 15 min. to work, so hopefully he'll feel better soon. His Dr. wants to re-evaluate him for the shots in his legs again. We have to do that soon!! Maybe that will help ease those muscles. Otherwise Mike and Amy have off school today. (Jimmy's teachers come out to the house, but they have off today to). I like when the kids have off, its not so rushed around here. Everyone is nicer. :0) Well, He seems quiet now, so maybe I'll get the day started here. Much love to all and thank you for those prayers~* Love, Lin~* (Jimmy sleeping. in pic below.~*) SATURDAY APRIL, 15th. I am hoping that Jimmy is feeling better. I had wanted to take him to McDonalds today. Sometimes the little outing cheers him up. Im really praying that his spasming lets up. Yesterday he kind of just sat around and watched tv. I bought him the Monster's Inc. movie on DVD. He likes the character Sully. Also the little girl in the movie Boo, looks like his cousin Vallari, so he thinks thats neat!! Later today or early evening we'll color the Easter Eggs!!!! Thats always a fav. for him. :0) So, hopefully we'll have more pictures for everyone to see later on today. So long for now. Love, Lin n Crew~*

Thursday, April 13, 2006 5:43 PM CDT

Hi Everyone. I see a slight difference in Jimmy today. Not so much stiffening and spasming and he even ATE. The first pic of him below was him yesterday. He looked so......OUT of it. He was so tired and just plain tired of feeling lousey. WHAT A DIFFERENCE A DAY MAKES! Keep those prayers comin. The pic of him eating cereal was from tonite. He was at the table and hungry. HUNGRY is always a good sign with him. We have all our baskets waiting for the Easter Bunny to come. :0) I put them out and they are empty except for tissue paper stuffed in them. Kind of looks festive. :0) Cant wait to color eggs with Jimmy on Sat. nite. Mike, Amy and Dylan usually help. They did last year and I got some good pictures. I love Easter and what it stands for. Despite all the pain and hardship we know on earth ,there is a Heaven and it waits for all of us who believe. May you all have a Happy Holiday, whatever it is that you celebrate. Check back with us for Pics of how we celebrate this Holy week. AND thank you again for all your prayers for Jimmy. God's blessings to each and everyone of you too. Love, Lin~* Jimmy yesterday not feeling well. I call this "Down and out in Fla." A LOT of PRAYERS and a day later and LOOK!! He's eating Cookie crisp cereal, and not just any kind....Peanut butter flavor. Now doesnt that just get your taste buds going?? lol. !! Yummy!!

Wednesday, April 12, 2006 6:12 AM CDT

Well, here we are another morning of Jimmy waking up seeming ok. Taking his bath and then suddenly crying. His spasming has acted up again and progressively gotten worse.It started a week ago for no reason. Then escallated into him feeling lousey practically all day yesterday. He is on his tylenol w/codeine now. Another added medicine to his regimen. Im trying to stay positive but all the while knowing his brain damage, that can never be fixed, is what's causing these spasms. They almost look like seizures, but its not his brain thats involved its his spinal column nerves that are going wacky and causing his muscles to tighten and twist. Its his brain sending the "wrong" signals to his muscles via the spinal column, which is filled with all kinds of tiney nerves.....Need I say more. When he has these flair ups, we just have to ride it out with him. It could last a week or more. Once it went on for over 3 weeks, causing me to have him tested for EVERY illness under the sun. Everything coming back negative. This time, his liver enzymes were up, and that was the only thing different in his check up. We're not sure if its one of his meds. That would be bad, having to take away a med that is used to treat the Dystonia/muscle spasms. Oh God how I want him to get better. Easter is just around the corner and I want him to be able to enjoy the festivities. Please, I rarely ask for prayers for him on this web site, but please if your visiting today say a prayer that Jimmy's painful spasms stop. That he is allowed to be himself and have fun, enjoying his life. Thank you in advance. Love, Lin~* P/S Right now he's sleeping, but I know when he wakes up, he'll try to have a good day, but he'll run back to his room and just sit waiting for the next spasm to hit. (The tylenol w/codeine is giving him some relief, but its a temp. fix)

Sunday, April 9, 2006 6:44 PM CDT

Well, today is Sunday and Jimmy's spasms woke him up this morning. I had to give him tylenol w/codeine, which he hasnt had to get for about a month and a half. When he is in this much pain from the spasms we were told by his pain management Dr. to just give it. He gets the "itch" from it and he walks around scratching his tummy and his arms. Poor little guy had 4 baths today. Sometimes the water helps. We couldnt get him into the hot tub today because it decided to thunderstorm all day and the tub is on the back porch. So, we stayed inside. He is still eating which is a good sign. NOT like he usually does but tonite he had a little bit of chicken and some toast. Lots of gatorade too. He is sitting on the couch with his foot on his dad's chair, which means he wants daddy to rub his feet. lol. OOPS hold on, he's back at the table eating more ....TOAST now! He sure gets around. lol. Hopefully he will have a better day tomorrow. The weekend was spent just staying inside and keeping things quiet. Thanks for stopping by and checking in on us. Love, Lin n Kiddo's~* Jimmy with his trusty blanket having some toast.

Saturday, April 8, 2006 3:40 PM CDT

Jimmy's spasms started up again a little bit on Wed. Then Thrs. and Fri. He began having them really bad today. We haven't changed our routine or done anything special around here, so I have to believe its like the Drs. say.... He'll have good days and then bad. But Oh Boy are the bad days bad. I have to keep giving him his meds back to back and then he just kind of lays around not really acting like himself. NOT making any of those Jimmy sounds he is so popular for. I miss that. But as long as he rests and can still watch tv and enjoy life a little bit while his body is going thru this, then I'll just have to take that! :0( Please pray the spasming stops and he can resume happier days. Thanks for everyone's thoughts and prayers. Love, Lin~* (P/S For newcomers to his page the spasming is from the central nervous system damage to his brain from the tumor and his Mild C.P.) "So, today I rest and pray that tomorrow I will have the strength to take my life back and do all the fun things I love to do" What Jimmy must be thinking.........

Sunday, April 2, 2006 6:34 AM CDT

Its been an interesting week. I got Jimmy to the Rag Shop with me again. My Drs. appt went ok. My ulcer was kicking up again, in the form of gastroenterittis. Ouch. Inflamation of the lining of the stomack. Im on the 2 meds that I was on last time this happened. Amazing Im feeling better, BUT have to remember to take the medicine. :0) I just wanted to say thank you to everyone who went over to Lori's web site and either signed or emailed me. Your words were very warm and sweet. (Lori was my 1st child who passed away). Her link is below. Onto what else we've been up to...We revamped the fish tank. Got a few new fish and changed the look inside the tank. We had to take Jimmy's Sponge Bob theme out of there because I found out the little figurines that we bought from the pet store and put in there were making the water yellowish/green. Seems the paint they used was peeling off, slowly polluting the water......So, we went with a different theme. I'll just have to take a pic and add that later on today. Its really CUTE and Jimmy just looks at it in amazement, as if to say "How'd you do that".

Thursday, March 30, 2006 8:33 AM CST

Well, today is the anniversary of my daughter Lori's passing away. Come to her web site and see pics of her. She was only 2 and 1/2 yrs. old when she passed away of a brain tumor in 1981. Please stop by her web site and leave a message on her guestbook if you can today. Im heading off to the Drs. later. I think my ulcer is acting up again. Jimmy needs that other blood test done, so we may zip by the hosp. to have that done today too. I will post pics later of the cemetary where Lori is burried. I'll post them on her site. I'll be bringing flowers and Easter things. She always loved the holidays and Easter and Christmas was her favorite. Have to run for now. Talk soon.~* Lin n Family~* P/S thanks for always stopping by to see us. This is a picture of Lori enjoying Easter when she was 16 mths. old. It would be the following year that she would pass away of a brain tumor......At the bottom of Jimmy's page here go to links and CLICK ON to Lori's web site. I will update and post more pics of her there in a little bit, as soon as Im done here. :) Thanks. Lin~*

Wednesday, March 29, 2006 6:08 AM CST

Hello everyone. We have another perscription for blood work for Jimmy. We have to find out why his liver enzymes are all raised. It is most likely his seizure med. But, His CPK has to be cheked now to see if its his muscles. So, he'll be getting another stick possibly today. He's pretty good about it and just lets the tech. do her job. He actually smiles at her the whole time, which she says makes her feel bad. Here's this kid smiling at you while your drawing blood. :0( The inside of the house is done. The new coat of paint looks great. I spent the better part of yesterday making curtains, while Jimmy slept. Mike and Amy were back to school and I missed them. They'll be out for summer vacation the end of May and Mike is graduating this year!! Yippeee! Amy has 2 more yrs. to go to School, then she's finished!! I'll try to get more pics up of the house all "made over"! It was fun. Talk soon. Lin n crew~*

Saturday, March 25, 2006 12:34 AM CST

OK! The moment everyone has been waiting for. The new, the improved, the very colorful, House of Terra-Cotta, Beige and accents of blue!! (click on where it says view photo's) lol. We did it. 3 days or 26 hrs. later. We now have a house make-over. I LOVE the colors, but noticed that the terra-cotta is brighter when the sun is out and gives off a more deeper hue when its not. Hmmmmmmmmmmmmmm. Oh well, its on the walls to stay!! lol. But, I really do like the colors. I just took Jimmy to the Rag Shop with me to pick up some fabric. My old kitchen curtains just arent doing it. So, I bought a pattern that has little sea shells on it to go with the nautical/sea look Im planning on doing in the kitchen. Which will now be called the Galley!! lol. I saw wodden letters at the Rag Shop that I want to get next time. I want to spell out "The Galley" and put that over the kitchen window. I had my 40 per cent off coupon with me today and that helped with the fabric. I spent a whopping 10 dollars there. Pretty good, huh? I spotted a woman doing some arts and crafts for kids at the front door. So, you'll see a pic of Jimmy doing some "hands on" crafts with her. Well I better get these pictures up. Take care and watch for more exciting home improvements from the Jimmy-Joe household. On another note Jimmy's Neurology appt was cancelled on Thrs. because the Dr. had a fam. emergency. :0( Hope everything is ok there. Anyway we see the doc next mth. Jimmy's blood work came back with some levels off. The enzymes for his liver. But it could be off from his muscle disease. We have to find out by doing another blood test its called a CPK check. So, he'll most likely be stuck again next week. Im praying the medicines he's on for the spasms arent reaking havoc on his liver. It would be sad if the very drugs that are keeping him well are harming him in another way........Im trying to stay positive and just keep swimming up stream. Keep swimming like Dori and Nemo said in the movie Finding Nemo. ~* Love to all. Lin n crew~*~* Jimmy at Rag shop.

Wednesday, March 22, 2006 8:24 AM CST

~* Hi Everyone!! We decided to give our house a make over........so, let me introduce you to our new interior design. Brought to you by Jimmy-Joe painters!! Well, Jimmy actually watched while brother Mike and I painted. We chose a nice beige color, which we'll accent with a nice pale green. I have ALWAYS had WHITE, WHITE walls. In the whole 18 yrs. we are here, I have never put color on the walls. I wanted to "see" every mark on the walls when the kids were little, and of course the walls had to be semi-gloss, so they could be scrubbed clean. lol. Now, Im in for a whole new change. Flat paint, which is actually kind of nice. Rich looking. lol. The kids decided to do their rooms in bold colors a few yrs ago. Mike's a radical blue and Amy bright pink. I was in "painters shock" for about a month. I couldnt go in there, but ya know after I saw how "individual" my kids were, I thought "Why not". After all they spend most of their time in their rooms, so........I went with it. Jimmy's room is white but he has a lot of things on the walls that are brightly colored, but his room still needs dry wall work from the hurricane. Mom here is in charge of dry wall. I think I was a man in another life who did dry wall. lol. I LOVE patching and sanding, etc. (Weird, huh?). lol. Oh well, thats what we have been doing during Spring Break. We couldnt go away and Mom's van is on the fritz. Its going into the shop tomorrow, so we decided to make the house look nice anyway! So, enjoy the pictures below of how the inside is coming along. Jimmy is in charge of holding the supplies. lol. Till next time. Keep on paintin' or what ever it is your doing for fun!! Love, Lin-n-Crew~* Hmmmmmm, a paintbrush. I wonder what you do with this?? Oh, I see mom and Mikey putting paint on this thing over and over again and bending and saying "Ouch my back" a lot....... It all looks very tiring to me..Yawn.....think I'll shut my eyes for a few minutes..............ZZZZZZZ.

Saturday, March 18, 2006 6:10 AM CST

Greetings~* We're all looking forward to Spring Break for the kids. Yesterday was the last day of school now for 10 luxorious days. I LOVE having my kids home. We will probably do day trips. Maybe try to get Jimmy out to the beach in his wheel chair and walk so he can see the ocean. We drove by last week and its amazing how close we live to the beach and never go.............Jimmy isnt really that good at the beach. he eats sand and drinks the water. He is really hard to keep calm there and we use to be afraid for him. BUT, the hurricane caused erosion and 2 cities near us rebuilt and put sidewalks along the shore where you can walk and push a carriage or wheel a wheel chair. Its pretty nice. So, we'll see. Other that that we are getting VERY ready for Easter. I'll try to update regularly during the kids break from school and also let you all know what Mike and Amy are up too. Jimmy has his big neurologist Drs. visit Thrs. I'll also keep everyone up to date on that......Take care and thanks for always checking in on us. Much love, Lin n kiddo's~*

Wednesday, March 15, 2006 6:04 AM CST

Hi Everyone! Thankfully we are better. The flu decided to leave the building. Jimmy never needed the chest x-ray. He woke up Monday morning NOT coughing his head off, so that was good. He's still finishing out the z-pack for kids. He has 1 more day on that. So, hopefully thats it with that! The kids little pet hamster Hamlet died the other nite. I know some people would say, well its only a hamster but, he was a special little guy. He suffered what we think was a head injury 6 mths ago. he use to like to jump on his water bottle and slam it into the side of the cage, so.....after a trip to the vet it was decided that he couldve gotten his head stuck behind the bottle and had swelling. He was given a cortisone shot and he was good to go.......Then A few weeks ago, he started staggering and his one leg looked stiff. We brought him back to the vet and they thought....hmmmmmmmm.....maybe he has signs of old age. Maybe arthrittis. So they gave him another shot. He would get better and then look sick. This went on for 2 weeks and if a critter was ever kept alive by love, I think this little guy was. The vet told Amy to supplement his food with baby food. Cute, huh? So, we bought him strained veggies and Amy would feed him with the spoon. He was looking pretty good there for awhile, BUT, finally his body couldnt take it anymore and he died Monday morning early. The sounds he made were so horrifying. I think that was the worst part for the kids n I to take. He didnt go quickly but rather hung in there for 8 hrs. They are fighters, those little guys. So, its not like when they were little and you can go out and get a "replacement pet" like some people do, and it works sometimes.........My kids are at the age where they are starting to be in touch with their own mortality. What life means to them. They are realizing that life is precious. Jimmy is kind of innocent yet in a way. He really responds to things like a 3 or 4 y.o. so, he is "saved" from the things Mike and Amy are going thru. A LOT of their friends who are also in their teens were calling and visitng to see how the hamster was all week. I thought wow!! He's a pretty popular guy!! :0) Well, Im sure he is in a better place. I hope the kids get over the death of little Hamlet soon. He was a lot like Stewart Little from the movie. He was very cute and animated. Good bye little buddy~* Fly free~* Love, Lin n crew~*

Wednesday, March 8, 2006 4:19 PM CST

Well here we are STILL sick as 2 dogs....well, one ol' dog, me and one pup, Jimmy. lol. Im on another antibiotic and an inhaler for my asthma. Seems this upper resp. infection got my asthma stirred up. I hate the inhaler because it gets my heart beating fast and has side effects that I dont like. Oh well... My lungs feel like I smoke 3 packs a day, but don't!! Jimmy was so congested and coughing so bad yet, today his Dr. put him on a second round of the z-pack for kids. The doc said its to keep him from getting pneumonia. Here's a pic of him chillin out in his fav. t-shirt. Its the one he wears when he's sick. lol. You know, the softest one in the drawer. Well, not much else happening here except sickness with this flu bug. Pray it leaves us soon. We miss our outings to Mickey D's. Much love to all and thank you for always stopping by to visit us. Love, Lin n crew~* Hugs from Jimmy~* Jimmy below watching Lady and the Tramp. Gotta love the old ones too!! They really revamped this one on DVD. It looks so much more vivid than when we saw it as kids. Thanks Disney!! Jimmy below asleep trying to shake this flu.

Thursday, March 2, 2006 6:53 AM CST

Well, here we are battling this flu bug again. Jimmy and I have it this time. Jimmy's fever went up to 103 which scared the heck out of me. I saw him sitting in his chair and went over to feel his head he was so hot, no lie, his skin felt like it was going to burn me. I got him in the tub and gave him tylenol. We had just been to the Drs. and he was just started on the z-pack for kids, so I was surprised to see that he got worse so fast. Next day, we went back to Drs. and he fell asleep in the van on the way over. I got a cute little movie clip of him on my phone, but dont know how to download it onto this web site. I did figure out how to email it. He'd prob. be so mad if he knew I captured him falling asleep. What he was doing was.....well, lets just say he was trying to keep his nose from running , and did whatever came "natural". I'll try to download later in the day. My whole body hurts! I cant hardly type cause my fingers hurt too. So bye for now. Love, Lin~* Jimmy Hangin out. The flu aint no fun.

Saturday, February 18, 2006 8:23 PM CST

Well here we are into the last weeks of Feb. My sister-in-law and her hubby were down from Michigan. They stayed here for a week. Jimmy really bonded with Bill. He stuck to him like glue. lol. Bill of course loved it. All his kids are grown. Now, its back to business and Drs. appts. coming up in Feb. and March for Jimmy. He is doing well, and we thank God for his good days. Cherish them and really thank thank God everyday. Well not much else to report from Our house. Love to all and thank you for always checking in on us. Love, Lin n crew~*

Thursday, February 9, 2006 9:06 AM CST

Jimmy introducing his Sponge Bob toy from Burger King to the big Sponge Bob pillow guy! Check out that smile. Thankfully Im feeling better. Had to change antibiotics, but thankfully Im up to par again. Thank you everyone for continuing to check in on us and leave really cute messages in Jimmy's guestbook. We love reading every single one. Love, Lin N crew~*

Monday, January 30, 2006 11:06 AM CST

As fate would have it good ol' mom here decided to get sick again. I dont mean a little sick, the whole kit and kaboodle, sick. I guess I caught what was going around since after Christmas. It feels as close to the flu as it could get. Thankfully Jimmy is holding his own and not showing any signs of getting it. Yesterday I started feeling really bad, headache, sore throat, but because the big Greek festival was in town and only 5 min. from our house, I figured "Why not?". I pushed myself and probably shouldnt have. After we got there Jimmy seemed to be getting use to the noise and hoopla but, I was fading fast. We bought some Greek food to bring home (My salad is still sitting in the refridge.) But check out who DID eat before we left the festival. I was happy to see Jimmy smile when Big Daddy devoured a whole lamb shank and the fixings. lol. It really was funny!!

Tuesday, January 24, 2006 7:52 PM CST

The cough and cold has left the building. YEA!!! Jimmy is lovin up his under-sea creatures. Here he is with his Nemo fish that he got for Christmas from Aunt Deb and her crew!! Thanks Aunt Deb, Uncle Charlie and kids~* Sponge Bob snuck in for a picture too, I see. lol. I want to try to get Jimmy up to Orlando to Sea World someday! Mike my 19 y.o. just went to Disney with some friends for his birthday on Jan. 19th. He had a great time. Amy and Jimmy and I spent the day hanging out here at the house and wondering "what" big brother was riding all day! lol. Oh well........We had a nice quiet time. Check out Jimmy's picture page for more pics. Much love to all and thank you all so much for continuing to visit Jimmy's web site. love, Lin~*

Saturday, January 14, 2006 6:04 AM CST

Here we are half way thru January already! We are planning a fun Valentines Day! Much before then on Jan.19th. my older son Mike, celebrates his 19th birthday!!! Wow, where does the time go? He will be going to Disney World for 2 days. We live about 3 hrs. away, so its not a very long drive. A few friends who were able to go with him said they would. We all, Jim, Myself, Amy & Jimmy wouldve loved to have gone, but its always something...........this time it just isnt in the stars. So, we'll send Mike anyway and Im sure he will have a great time. I told him I want pictures!! Jimmy started out the week with another sinus infection, but that seems to be clearing up. Thankfully. He looks so sad and wont make any of his Jimmy "happy sounds" when he's sick. Onto better days. Other than this small update thats about it. Hope everyone is enjoying the New Year and looking foward to Valentines Day! Thank you everyone for always checking in on us for updates. Love, Lin, Jim, Angel Lori, Mike, Amy n Jimmy~*

Monday, January 9, 2006 6:35 AM CST

Well, the tree and the decorations are officially down. because I am one of those people who would celebrate Christmas all year round, I will not dwell on my thoughts and feelings this past few days. I must conform to societies rules, I must conform to societies rules.....................BUT let me say this I have already forwarned my family that ONE year I WILL leave my Christmas decorations up all year! lol. So, I live for that day.........ONTO New Years and whats up for us. Blood tests for Jimmy, scans, reports, etc. Hopefully good news on that end and much peace. The memories we made this Christmas with friends and family will take us through the year. Much love always to our caring bridge families. Sadness and prayers for those who have lost loved ones.......Well, just this short update right now. Have to get my Valentines decorations out and my trusty camera and take some cool photo's of us celebrating the NEXT Holiday with style. Till then much Love, Lin, Jim, Angel Lori, Mike, Amy & Jimmy-Joe~*

Saturday, December 26, 2005 5:12 AM CST

SCROLL DOWN TO SEE PICS OF CHRISTMAS DAY!! Hi Everyone!! Christmas day was filled with much joy and laughter! Things started out a little slow when Jimmy decided he wanted to take a warm jacuzzi before he opened presents. Well, a warm soak turned into a very longgggggg bath!! So, Amy and I started handing him gifts in the tub to see what he would do? Well, you guessed it, he had a Christmas Florida style. See the cute pictures of him below opening presents while snapped away! Today is his 14th birthday and we celebrate with a huge party. I will update later on with some more pics. Love to all and Happy Holidays from our shack to yous~~** Dressed to help Santa~* YOUR ALL ON THE GOOD LIST!!! Love, Lin~* Christmas Morn. Ahhhhh nothing beats opening presents in the hot tub!! Yea!! A new guitar!! I love these guys~* A SNOWMAN in a hot tub?? I can see where this is gonna go!! lol.~* One more picture of that beautiful cake before we cut it~* Forgot to show everyone what Jimmy learned to do!!! Mom here has a heart attack when he goes completely underwater. He is having a BALL here! His hot tub blew out our outlet, and its temp. out of order, so once we get the thing going again. I'll have more pics of Baby Shamu. lol. Daddy sings Happy Birthday to his boy Jimmy~* Ahhhhhhhhhhhhhhhhhhhhh!! lol.

Friday, December 16, 2005 5:45 AM CST

Hi Everyone! We had Jimmy's big neurological check up on Tues. The Dr. said he looked pretty good. He did say that he wouldve liked to have seen Jimmy saying words by now, and when I asked him if he thought he would ever talk, he said he didnt think so. BUT that Jimmy may be able to communicate thru sign language. He already knows a few simple signs. "Give me". "Thank you". Signs like that. When I asked Jimmy's speech pathologist last week what she thought she said the same thing.I DO know miracles happen, so.....I go with that in my heart first. The Dr. feels the mild C.P. is what really robbed him of his speech. The area of the brain that controls speech was effected and also his left side. (Thats where he has the more severe spasming). The brain tumor added other problems... But, Jimmy is Jimmy and oh how we love him. He is unique and he is the sweetest guy in the world. Ya just gotta look at that great smile to know that!!!We see Dr. G. again in 3 mths and he wants to do another E.E.G. and MRI scan over the summer. The trip to the Drs. was long, about an hour, so I took my camera with me. I captured this big guy on the side of the road. lol. A snowman in Florida, how very cool!! Love, Lin~*Jimmy's Ma. ~*A QUICK UPDATE*~....WHAT I THOUGHT WAS JIMMY BEING TIRED AT HIS DRS VISIT WAS ACTUALLY HIM GETTING SICK AGAIN. EAR ACHE AND SORE THROAT. HES ON MEDS AND WILL HOPFEULLY BE BETTER FOR SANTA NEXT WEEK. Check back for more updates and pics. We want to see Jimmy smiling and happy again. He looks so sick. Frosty in Florida~* A tired Jimmy waiting for his appt. to see the neuro. Dr. G. sure has a nice Christmas tree!!

Sunday, December 11, 2005 7:07 AM CST

Hello everyone. Last night was Amy's 16th birthday party. I have a lot of pics to download, so I'll start with these few. Jimmy had a great time celebrating with big sis and bro (Mike and Amy) and about a dozen of their friends! Dad sang and played the guitar to "Happy Birthday sweet 16" and of course I got all choked up, but promised Amy I wouldnt cry and embarrass her in front of her pals. lol. The kids went thru 10 pizza's from Domino's and 30 cupcake treats that Amy's friend Kerby made. (They are too cute! Cupcakes baked inside ice cream cones). I had 5!! LOL! See pic of the sweet treats. Also devoured (lol) BY THE KIDS!! LOL.... Was a an orio cookie cake. No wonder why the kids were all charged up until midnight. My baby will be getting her permit now and I guess I can look forward to the joy-ride, whip-lash, buckero rides like her brother gave me for a year before finally getting his license! I love that the state of Fla. wants the kids to practice with their parents in the car. Thank you!! Hahaha!! lol. Dont blink.......kids grow up so fast! But, I have found that at 15,16,17,18, or 19 they still need mom for a LOT of things. Today Mike asked me to go to the mall with him to help him pick out his girlfriend Tina's Christmas gift. (See they still need ya). AND he has HIS OWN money, so I know he isnt using me for paying the bill. lol. Well, gotta run for now. Much love and enjoy the upcoming Holiday preparations. Oh I also put up a pic of our house with the Christmas lites up and on. Hope it is visible. Much love, Lin, Jim, And kiddo's~* Jimmy enjoying the hoopla on Amy's celebration. With 10 pizza's devoured, its time for cake!! Mom begs Mike and Amy to get close for a pic. (Look at the look in both their eyes.....Ahhhh Brothers and Sisters...they always have that mischevious look about them when they are together!!) lol.

Friday, November 25, 2005 8:17 PM CST

Thanksgiving was beautiful. Jimmy was happy to have family over and we all ate way too much!! Friday, was filled with a trip to the mall to see Santa. We also got interviewed by our local newspaper while we were on the line to see Santa! The write up should be in Tuesdays paper. No picture though. lol. Then home to put up our Christmas tree. I will update more as the days go by and put up some more pictures as we go along our merry ways.~* The kids are very excited about Christmas and eager to help and get things done around here. Thats all for now. Love, Lin~*

Saturday, November 19, 2005 6:03 AM CST

Well, the party as you know from the past journal was a sucess! Jimmy enjoyed seeing mommy get some attention. Amy's birthday is next, then Jimmy's then Mike's. Bing, bang, boom. lol. The picture you see is of me (Lin) being Jerry Lewis. Hubby was Dean Martin. You'll see him dressed in his tux too, getting crazy stringed by Jerry!! lol.. We had a ball. The house was decorated for Halloween yet, and 50 friends and neighbors came to celebrate me being 50! Onto Thanksgiving and May you all have a blessed Holiday too. Much love, The crazies~*

Tuesday, November 15, 2005 6:19 AM CST

Hi Everyone!! Jimmy is doing well. He helped me celebrate my 50th birthday in style. ALONG with 50 of our friends and relatives here at our house. We had to cancel it due to Hurricane Wilma, so it was re-scheduled for this past Saturday. What a fun time. AND yes, everyone came in costumes. It was a costume/birthday party, since Halloween was cancelled from the storm, too. I will post pictures once I download them. We trnasformed my whole living area, kitchen and bathroom into a Halloween wonderland. It was awesome. We rented tables and chairs from a rental company and had black table cloths. VERY dramatic. Also a few "50" decorations. We had FUN! I was Jerry Lewis and my hubby was Dean Martin. We rented tuxedo's and the wigs were funny. I had those glasses like Jerry wore and the teeth. lol. What a time. I may get some gigs after that display, lol. Jimmy was enjoying the party but he likes to go back to his room to rest quite often, so we had the respite worker, Eva, here to kind of shadow him. He LOVES Eva. She has been coming out to help with Jimmy since he was 3. :0) Well, better end this update for now. I will post some pics soon. Love, Lin~*

Friday, November 4, 2005 6:06 AM CST

Hello everyone!! Things are slowly being mended at our humble abode~:0) Fences are mended and the shed is "taped" back together. I never knew they made metal tape. lol. Im learning a LOT!! The screens on the porch fixed and other repairs in progress. The kids have been off from school for 2 weeks. They will most likely go back on Monday. Jimmy is sleeping right now so, I had a chance to get on here. Some say the hurricanes will be an annual event down here in Fla. Now, I dont know what you guys think, but in my world an annual event is a county fair, a clothes drive, a church bake sale. BUT NOT a hurricane. I dont know how many times we can do this. It was pretty nerve wracking. I have a lot of thinking to do before next hurricane season begins. Heck we're not even out of this yrs. hurricane season. BUT they say the temp. of the Atlantic should be cooling and we'd NEVER get one this late in the season. May I have that written in stone please? lol. But anyway, thank you, thank you, thank you, you well wishers and prayers. Every email and guestbook entry was so appreciated. Onto better days and Thanksgiving which will be a wonderful holiday indeed. So much to be thankful for again this year. Much love,Lin
Jimmy after the storm, wondering what happened... Because Jimmy is non-verbal, I can only imagine what he was thinking. It probably went like this. "Hmmmm. First its getting to be Halloween, but then a Hurricane comes, then Halloween is cancelled, we skipped Thanksgiving? Now its Christmas???" BUT the truth is we went to Home Depot and they had their Christmas scene set up so I couldnt miss a chance to get a "warm fuzzy". Hahaha! This pic looks like Jimmy is saying "Hmmm I can get use to this". Click on this pic to go to Jimmy's photo albums thru Macs. (Make a Child Smile web site.)

Monday, October 31, 2005 7:43 PM CST

Hi Everyone. I got Jimmys pills today!! The liquid tegretol is coming in soon, but they spotted me 20 pills to hold us over..Thank you God and everyone who prayed real hard for us. Things worked out and C.V.S. pharmacy will be receiving a very nice letter from me. They dont know this but Im a gift giver. They will be added to my Christmas list. lol. Im so greatful to them. See above Jimmy at the Home Depot. OUR fav. place to be for items after the storm. lol. We tried to make the best of it, but it was very crowded and hot inside the store. We had to bring back a battery operated t.v. radio that I bought before the storm. It was a battery sucker and the antenna broke when Klutzo mom here tried to get a local weather channel in the midst of Wilma. Snap went the antenna. It was funny because a lady in front of me was bringing back the same exact t.v. radio. lol. Guess it didnt work out for her either. Anyway, we stumbled on some wood and My son Mike and I found the LAST 2 pieces of 4x4's for our fence. The wind was so strong it snapped the 4x4's right in half. The pic of Mike standing next to the wood is a monumental moment. We NEVER have good luck with finding the "last" of anything, but we did today with the wood. lol. AHHHHH, the things that make ya happy after a Hurricane. Anyway, we are re-building and I hope to have more pics up after our yard is complete. Thank you everyone for your awesome messages in the guestbook. They have been therapeutic for the whole family. The emails are priceless. Thank you all again. Halloween was kind of cancelled today because a lot of people still have no power. The kids will most likely be out of school all week again........did you hear the cheering in the backround?? lol. My 50th birthday/costume party that was suppose to take place last Saturday will be coming up soon. Maybe the 12th. We'll see. Its going to be the party of the century. :0) Welp, bye bye for now. Keep checking back for more updates and re-building tips. lol. I should have a t.v. show called "re-building, after a hurricane and other fun things to do" this..... But with some wood and hard work, it'll look nice again........check back for updates and pictures. Mike, my older son, found the last 2 pieces of wood for the fence. Way to go Mike.~*

Sunday, October 30, 2005 2:07 PM CST

Our yard after the storm. DRUM roll, we have power. Yippeeeeeee!! 6 days was long enough to be without. Even with the gas generator the last 2 days of no-power, it was still rough. The gas shortage made it impossible to run the generator a lot. Now, the biggest dilemma is getting Jimmy's liquid tegretol. Its a seizure med. that he needs! The one pharmacy that we always get it from is closed due to the damage it sustained from the storm. Other pharmacies dont have it. I had a good idea!!! Light bulb moment here. lol. Have the other pharmacy go get it from the one who does have it sitting right there on its shelf. NO! That'd be too simple. So, they're making us search heck and high water for the medicine. Then we'll have to go to the pharmacy where it is and get it. The bad thing is Ive been trying since Friday to get it, but it doesnt matter, when a hurricane hits, you wait. I think I lectured about this when we heard about katrina. Its really sad, but you just have to sit and wait. Unfortunately they dont know me very well and if I have to go to the pharmacy myself and walk with a sign, they WILL open the doors tomorrow and GIVE ME MY KIDS MEDICINE!! My sign will simply say "Tegretol being held hostage here.....please let it out". lol. But really, thats what it amounts to. I'll get it, thats for sure!!! Our yard is slowly lookin better. After things simmer down around here, the kids are off school, till God know's when........I like them home though. :0) I'll try to put up more pictures in a few days. Im just re-washing clothes that I was rinsing in hose water outside when the power was out. Did you know 1 cap-ful of bleach to a gallon of water kills germs?? lol. Im a real Suzy Homemaker now. BUT we are all thankful we are ok. It was nerve wracking the day of the storm, but it made us stronger and bond more. Thank you everyone for your cool messages on the guestbook and also emailing me. Love you all so much. Be kind to Mother Nature she's only a soft breeze away. lol. Love, Lin~*

Friday, October 28, 2005 6:06 PM CDT

Hi Everyone. We are into day 5 without power. Alex sent out an update a few days ago. Things are slowly getting worse because of no power. Water isnt good to even do laundry in the sink in anymore . Yikes. Jimmy is dealing but he is slowly getting sadder and sadder. :0( Poor little guy misses his tv and other fun things. He has his teddy bear that plays his tapes. Thats been his joy. We are getting weary but we are ok. Damage to our property BUT we're OK!!! We're together and coping. Thanks for checking in on us. Much love and I hope to be able to update again soon. Using a gas generator right now but must stop soon. There's a shortage of gas like no other!!! Cant run the generator or drive anywhere for food if we dont get gas soon. We have enough stuff for a few days but they say our area will be without power for another week or so. Hopefully the famous FEMA will set up stations around our neighborhoods with food, gas and water. I think things are going to get worse before they get better. Our toilets are barely flushing now. We survived the storm, but the aftermath is another story..... Yikes..... Im sure we'll make it but its bumpy right now. I'll try to update in a few days....Love, Lin~ Image of our back yard. VERY different from before pics. Amy and Another pic of the yard after Wilma.. On the picture page you'll see before pics of happier times. :0) Im sure things will improve once we have power again. I will TRY to update as often as I can. Right now we are trying to get Jimmys pills called in and everything is slowwwwww! Pharmacies are without power. Its a real mess. Till then Take care. Lin~* This is actually a BEFORE pic of our yard!!

Sunday, October 23, 2005 1:31 PM CD

Hi Everyone!! Here we are waiting for the hurricane to arrive. It is coming in from the west coast of Fla. and due to get here late tonite, early tomorrow morning. Its a catagory 2 now. Expected to be around that when it zips thru here. Check out what the kids are doing today. Looks pretty pitiful, but they worked real hard putting shutters up and bringing in outdoor stuff. (Except Jimmy, he doesnt do any work!!! Life is hard enough for him, so he's exempt from physical labor. lol) Anyway. Here's what it looks like in anticipation of a hurricane down here in Florida. I'll try to take pics tomorrow afternoon when Wilma decides to take a hike. Love to all and thank you for your thoughts and prayers at this time. Lin & Family~* By the way.......ABOVE!!PRESENTING Hurricane Wilma!! lol. I didnt do that. Someone emailed me this. Yikers..... All shuttered up. My older son Mike. He's a Category 5 worrier. Cheer up Mike~* Amy's boyfriend Dylan who is trying to catch 40 winks~* Dad brings in more supplies~* Check out Amy in the back is she helping or being nosey??? lol. Shuttering up the back door, right over the Halloween decorations. OOPS! Gotta get that grill inside. lol~* Even the little critters come inside~~** Little Delta the baby turtle. And in the cage Hamlet the hamster (Amy's).Hamlet always stays in Amy's room. :0) Some other critters of ours. These guys stay inside all the time too. Too hot outdoors. ~* Last picture, but not least!! What my hands will be doing all night and into tomorrow as Wilma passes on by. God's blessings to all who are in her path. May she be kind to us.

Tuesday, October 18, 2005 3:08 PM CDT

Hi Everyone.~* For some strange reason Jimmy's body spasms have decided to come and go. Just imagine a roller coaster ride but one that isnt fun............We are working with his meds and hoping its just something that will pass. He seems fine otherwise. No signs of a cold or anything like that. Just the legs acting up again. Spasming when they want to and causing pain and grief for him. :0( Please pray that he has pain free days. We are trying to keep things quiet around here and in between when he's feeling good, we have his favorite Disney movies playing for him. He's pretty excited about Halloween coming up. Im hoping we arent hit too badly from Hurricane Wilma who looks like she is coming in the back door. Usually we get direct hits from the Atlantic. This one looks like she's coming in from the gulf on the west coast of Fla. We'll know more tomorrow and the day after. Hugs to all.~* Jimmy, below still managing a smile in between spasms.

Thrs. Oct. 13th 2005

Hello everyone~~** Halloween is upon us....We're all over our sore throats and bronchittis.. We've been keeping busy with stuff to do around the house. The kids have off today and tomorrow from school. Makes for a NICE 4 day weekend. We rented the movie "Kicking and Screaming" with Will Ferrel. It was pretty funny. Tonite Im making cookies with Jimmy. He is excited to see them come out of the oven but hates to wait till they cool off. lol. Typical kid~* His spasms increased today for NO apparent reason. He did however stay up very late last night, actually he was up till 4:30 AM this morn. Then he went to sleep and slept till noon. Got up and ate and went back to sleep again. Only to wake up a few hrs later. He was getting his meds at the proper times, because I'd catch him as soon as he woke up and give them to him. I sure hope he stops with the body spasms and is better tomorrow. Well, I will try to post more pics. Take care everyone. Love, Lin~*

Tuesday, September 27, 2005 12:50 AM CDT

Well things here at the Jimmy-Joe household have been kind of interesting. Jimmy's bronchittis decided to hang around for a week. He's still coughing up a storm. We decided to push the Holidays along a little here and decorated the inside of the house. It looks like a fall/Halloween scene going on in here. I got a warm fuzzy when I peeked into the attic and saw my Mr. Santa Clause looking down at me. lol. I told him a few more mths. Anyway, I had bought this big blow up pumpkin and ghost at the end of the Halloween holiday last year. I put it away for this year. I got them both for something like 4 dollars for the two. Anyway Jimmy took to this pumpkin and was jumping up and down on the couch with it on his lap, he would run for it as soon as he woke up and would fall asleep with it at night. It was his buddy. I say "was" because by the pictures you will see, I can honestly say big Halloween blow up type toys are probabaly not best used as human bouncy balls. lol. Come see what happens when a 120 lb. boy jumps on a blow up pumpkin............The ka-boom was like a shot gun going off. lol. Poor Jimmy looked like he lost his best bud. I am now searching every highway store for another one. lol. HAPPY HALLOWEEN~* LOVE, Lin, Jim, Angel Lori, Mike 18,Amy 15,and Jimmy 13

Tuesday, September 13, 2005 10:43 AM CDT

HI EVERYONE!! HURRICANE OPHELIA DECIDED TO NOT RUIN OUR VACATION, SO WE WE'RE ABLE TO GET AWAY TO ORLANDO FOR THREE DAYS!! UNIVERSAL STUDIO"S WAS AWESOME! ISLANDS OF ADVENTURE REALLY COOL!! WE STAYED AT THE EVER POPULAR HARD ROCK HOTEL. THE KIDS HAD A BALL. JIMMY SAW THE LIVE BARNEY SHOW TWICE AT UNIVERSAL STUDIO'S!! IT WAS A CUTE SHOW. GOTTA LOVE BARNEY ONSTAGE!! RIDING THE HULK IN ISLANDS OF ADVENTURE WAS A BLAST. JIMMY DIDNT RIDE BUT THE REST OF US DID. WE DID THE KID SWAP WHERE SOMEONE STAYS BACK WITH JIMMY.~* WE ALL, JIMMY INCLUDED GOT TO GO ON AWATER RIDE. IT'S A HUGE WOODEN RAFT AND YOU GO DOWN A FAKE FALLS. WE ALL GOT WET, JIMMY LOVED IT. HE ALSO GOT TO GO ON THE CAT IN THE HAT RIDE AND THAT WAS NICE. WE REALLY HAD A GOOD TIME AND TOOK LOTS OF PICTURES. ON THE PICTURE PAGE YOU CAN SEE A FEW MORE. LOVE, LIN AND CO. K. LOL. (Below) Barney & Mr. Peek-A-Boo and us at Universal.~* (Below) Back to the bench for a pic with dad and the gang~* SAW a Good movie~* Shopped till we dropped~* And pretty much called it a Night~~* LOL. See photo page for more of our 3 day vacation~*

Tuesday, September 6, 2005 5:43 AM CDT

Hi Everyone! First I wanted to say thank you. I received so many emails in reguards to my feelings on Hurricane Katrina. I figure if I live in the hurricane mecca state, you know the one with the bulls-eye painted on it, lol. Then I was allowed to voice my strong opinions on what goes wrong during one. Thank you everyone for emailing me. I realized I deleted the past journal entry where I talked about our personal experience with Jimmy during a hurricane last year. Just know it doesnt matter if your black, white, green or purple, you stay you must wait for EVERYTHING! We did on a smaller scale when Frances hit last year. Without power for almost a week. Meds running low for Jimmy. (Seizure meds no less). City officials need to USE the money the Pres. allotts for the hurricanes before they hit. Thats why the President Ok's money before hand. If the Gulf cities would have paid for bus tickets out a lot of people wouldnt have been crammed into a big fish bowl. Shelters should be used for people who want to stay. Not force people to stay who dont want to but cant afford a ride out. I dont want to re-hash my message from 3 days ago. But a Lot needs to be done before a storm hits. It is called preparedness. It Goes further than just buying batteries and water. Whew, I promised I would go there again. BUT its hard once you've seen firsthand what goes wrong.....Anyway kind people, I could hardly answer all of the emails. Ginny~* I dont think I'll run for president anytime soon. But thanks for the vote!! It marvels me how most of the emails were from caring bridge moms. Even with their day to day worries and concerns for their kids they still had time to email and say how they felt. A lot of them saying how they felt the same way! That how their hearts and souls went out to people in the Gulf states. All day yesterday Jimmy & I sat perched on the couch watching the Jerry Lewis telethon. When we made our donation we were happy to see that there was a number on the bottom of the screen for donations for the hurricane victims. The MDA goes on every year to earn money for the kids/adults. Which I dont know if many of you know covers many,many neural muscular diseases. Even Jimmy's Dystonia, which is a muscular Disease.
You just gotta love Jerry when he sings "You'll never walk alone" I have always had a special place in my heart for Jerry! I grew up loving his slap-stick humor. When I first got my computer I immediately looked him up. I received a nice note from one of his son's. Who would have ever known that I'd have a child who would suffer from one of the muscle diseases that he does so much work for. I have never had to depend on any services from the MDA association, but its comforting to know that the MDA association covers other neural-muscular diseases besides M.D. (Which by the way I have an uncle and a little cousin younger than Jimmy who suffer from M.D.) Well, the world goes round and I just want to say, Jerry is awesome and looking better these days. Less puffy, which I was glad to see. (Probably means his heart is doing better and he's on less meds). He wasnt toting around his oxygen tank. Thank God for that. He was making people laugh and cry. All the time keeping that great sense of himself and never ever forgetting the reason he is here today.....to HELP the kids and now even the Hurricane victims. (A portion of the donations went to them. Thats right!! They had a special number on the bottom of the screen and you could say how much you wanted to send to MDA and or Hurricane Katrina families) He shares so much of himself and I just gotta say I love him!! (His pic is always on my desk top backround. Isnt that funny??). Till next time Laddddddddddyyyyyyyy. (Ya gotta be really over 40ish to remember how Jerry use to say this). lol.

Tuesday, August 30, 2005 5:45 AM CDT

WHO'S THAT GIRL?
Look who was in the front row at the MTV awards. AMY!! Yep. Both kids went but Amy seemed to be in the right places!! lol. Mike was somewhere close by but not here, where Amy is seen cheering for Jamie Fox, the actor/performer. (He just starred in the movie Ray, about Ray Charles). The kids loved being at the MTV awards and performing in the show's with the music celebs. Once in a lifetime thing~~** Jimmy stayed back with ol' mom and dad here. His pain in his legs has been on and off. I have to touch base with his Dr. again. Well, thanks everyone for stopping in. TTYS. Love, Lin~*

Sunday, August 28, 2005 3:48 PM CDT

To all the folks in New Orleans and the surrounding area. We are praying the hurricane doesnt hit too hard. mostly that you are all in a safe place as this fierce Cat. 5 hurricane moves thru your state. God's blessings to all. ~* On this end, first off we are thankfull the hurricane didnt go beyond a Cat. 1~* Onto better days....Mike and Amy and a bunch of kids from school were invited to be in the MTV awards ceremony tonite. Last year Mike went and we could see him perfectly as the kids are actually "part" of the show. The kids you see dancing on the floor in the front row? Those are our kids. (Well not ALL are mine). lol. There are about one thousand kids who will be there from S. Fla. schools. I cant wait to see how it goes. They have been to 4 practices and met musical guests already! They are very excited. They have been at the MTV building all day today and the pre-show starts tonite at 6. Then the real thing at 8. So, I'll get back to you on how many times I saw my kids!! lol. Last year Mike was visible quite a bit. Jimmy has been ebbing and tiding again with his spasms. Hopefully he will improve. If not we are looking at Botox shots for his calf muscles again. They were very painful the last 2 times and he really screamed and cried and it was quite stressful for him and for us.:0( Well, I'll keep this short tonite. Much love to all and thank you again for your prayers. Lin~*

Wednesday, August 24, 2005 5:35 PM CDT RAIN RAIN GO AWAY!!!

Welp, Katrina is upon us. Right now we are inside the eye of the hurricane. Its very eerie because all day we've had rain and a bit of wind and now its completely quiet, but in about 15 min. things should kick up again and they say gusts of wind up to 75-80 miles an hour. Yikes. I am home alone with Jimmy. Please pray that everything is ok. We never borded up because they said it would only be a category 1 hurricane, which it is, but Im thinking, ok it takes above a 100 mile an hour wind to rip our roof off, but I didnt think about flying debri. Hopefully all our neighbors picked up yard furniture, etc. Gotta run, the winds are picking up again. Its scarey when there are NO shutters up and you can see everything blowing around. I'll update tomorrow. Much love, Lin&Family. Say an extra prayer that Jimmy-Joe wont be too stressed out from the storm. :0) UPDATE~~** The eye has passed and it wasnt that bad. Thank God~~*We never lost power. Amy got stuck in Miami at the MTV practice. She and a bunch of friends from school are in the MTV music awards show. They had dress rehearsal tonight and then the kids got there and it was cancelled. Seems like they couldve called the kids and told them before they took the treck all the way to Miami. (50 miles from Boca). So, she and a few friends are getting a hotel room. Mike my older son opted to not be in this rehearsal .......Amy is more adventuresome. :0) Anyway. The cable did go out so Jimmy is enjoying the video Toy Story right now and laughing and making his famous Jimmy sounds. Im happy when he's happy. Thank you to everyone for your prayers and well wishes today. I was really starting to get concerned over Hurricane Katrina~* We'll still be getting lots of rain tomorrow but I think the worst is over. TTYS. Love, Lin~* HURRICANE KATRINA KATRINA THE BALLERINA Tip-Toed and poo-pooed thru Florida. Thanks TRINA for tredding lightly on us. We do deserve a break once in a while. ~~**

Tuesday, August 23, 2005 6:12 AM CDT

Hi Everyone...this morning started out bad, like the last few days have been, but then this afternoon. A WINDOW of opporitunity. Jimmy showed signs of not being in too much pain with his spasming. He smiled and got up and was walking around. His meds were finally doing the trick. We got out for an hour and even managed a trip thru the drive thru at McDonalds!! Yipppeeeeee!! Thanks for the prayers, I am sure thats what it was!! :0) Jimmy's lady Dr. said if he is in pain they will do the botox this week. :0) Much love to all and remember~~** Give out hugs like they are candy and dance like no-one is watching~* Love, Lin~* are

Saturday, August 20, 2005 8:55 AM CDT

A new weekend is upon us. We sure did have fun last week with my neice and nephew celebrating their 4th b-day here. :0) The week since has been sad........2 caring bridge families lost their children. Sweet Kyle, Crystal's son. Also Cody, son To Aleasha. Kids still secumb to their diseases, but I have to admire their families words, that their children did not LOSE their battles, they won! They are free of pain and with our Lord, God. And Jesus Christ. I knew all of this when Lori passed away, but I was too afraid to say it. Too worried about what people would think.....But, even though these kids do pass on, they have won in the scheme of things. They are in heaven and isnt that where we all want to be in the end? I have received so many signs from Lori, so I feel it safe in my heart to say "yes I believe in Heaven". Im not a magician and We dont "DO" parlor tricks. I cannot take credit for what we have seen. The signs to precious and right on the money to be anything else than Heaven sent. So, with all the Love in my heart, I say... Live in the moment. Live today. Dont put off anything for tomorrow. I like the saying "dance like no-one is watching!" Take each day and live it to the fullest. Yep, everyday is truly a GIFT. Much peace, Lin, Jim, Angel Lori, Mike, 18, Amy 15 and Jimmy-Joe 13. ~* ~~Jimmy soakin those sore muscles~~

Sunday, August 14, 2005 6:13 PM CDT

Hi! Today was a fun day. My sister's kids....My twin neice and nephew turned 4 today! My sister and her family and my parents came by. We had a fun filled day. Jimmy smiled everytime I said his cousin's were coming over!! How he loves his cousins. Jimmy stayed awake for about half of the party and then went in his room and took a 3 hr. nap!! He's up now spasming a little but I gave him his meds and hopefully he'll be up and happy again. ~* Aunt Lin comes up with a good passtime.... The Dinosaur cereal. Real dino's appear after you add the hot water. (Its candy and oatmeal).lol. vallari loves her talking princess mirror. :0) It was a fun day!! See more pictures on the photo page~* Bye~~**

Wednesday, August 10, 2005 5:43 AM CDT

Well, today's the day.....The kiddies go back to school. Mike is a Senior this year and Amy is a Sophomore. Jimmy who is hosp. homebound is 8th grade level, but actually has a Special Program to fit his learning needs. Im going to try to be very tricky when I approach the kids for a picture this morning. Maybe right when Im handing them their lunch money, I'll snap a picture of their happy faces!! :0) I dont hear any arguing over who's hogging the bathroom mirror yet, so I think things are going pretty smoothly. I HOPE! The quiet could also mean they both went back to bed!! lol. Amy was notorious for that last year and I'd check on her and she'd be back in bed snooring away!!!! Then it would be a lst min. dodge out to the car before Mike pulled away. Im really one of these parents who miss their kids when they are gone all day. My other thought is 7:30 AM is way to early to be sitting anywhere ready to work, unless your a rooster on a fence somewhere in Arkansas cock-a-doodle-dooing!! School should start at 9.......(ish). lol. Oh well, off to see where my troops are. Jimmy....lucky boy he gets to sleep later because his teacher comes later on....Around 11. Now, see thats a perfect time to learn!!. lol. Talk to you soon. Lin~*

Thursday, August 4, 2005 11:27 PM CDT

Well, we spent the 3 days that we should have been in Orlando, doing some home projects. Check out Amy, her boy friend Dylan and big Daddy-O Jim replacing the atrium outside in our backyard. Its really nice when you are inside the house in the bathroom, especially in the shower you look outside into an atrium. Out there we have some pretty plants and we are going to find some kind of little statue to put out there. Probably a big frog sitting on a lily pad. Hahaha!! Who says we dont know how to have fun??? Hahaha!! P.S. Mike rested until the last day and then helped. (Against my wishes, remember he's recovering from that tonsilectomy!!)There arent any pictures of him going against Drs. orders because he did that while mom here was out. MMMMMMM. Jimmy slept and just enjoyed his Disney movies. I ran gatorade out to the "workers" most of the time and pretty much prayed everytime I heard the electric saw going. Im a scardy cat when it comes to things that are powered by electric and cut. lol. Sounds like a grand time, huh? But, we really did have fun. Well, The Kids start school next Wed. so, we'll try to enjoy whats left of the summer. Till later. Enjoy

Tuesday, August 2, 2005 6:33 AM CDT

Sometimes things arent meant to be, and that is the case with our trip to Orlando. My older boy Mike had his tonsils out almost 2 weeks ago. He suffered a set back about a week ago and started to hemmorage. He had to go back to the E.R., where they treated his surgery as if it was day 1. They got the bleeding under control but he was hooked up to the I.V.'s and receiving decadron, anti-biotics and more drugs. After 4 and 1/2 hrs we could go home. We were suppose to get away to Universdal Studio's but when the Dr. saw Mike yesterday he said NO! So, needless to say we'll be mulling around the house for 3 days doing some much needed home repairs. :0( BUT the good news is we are setting another date where we might be able to go. Maybe sometime in Sept. I think Amy was more dissapointed than anyone. Jimmy is cool with whatever we do! Me? Well, who wants to be 3 hrs. away in the happiest place on earth, and have your kid say "Mom, My throat is bleeding again". Ummmmm, not my cup of tea. So, we'll have to make our own fun and let Mike heal. The doc said he is about 1/2 way there. He has the potential to bleed again, so Im kind of relieved to not be going. (Notice how I keep saying "we're not going..........") Ok Im a little dissapointed!!!!!! The HULK ride will just have to wait for me thats all. lol. Till next time, Make the day FUN, because really anyplace can be the happiest place on earth, right?? lol. Love, Lin & Crew~~**

Sunday, July 24th, 2005 9:26 AM CDT

Hi everyone!! Please say a prayer for Jimmy's older brother (My older boy Mike) He had his tonsils/adnoids out on Thrs. BUT today his throat started to bleed when he accidentally coughed in his sleep. We had to take him to the emergency room, where the ENT was waiting for us. It was pretty frightening. They started trying to get the bleeding under control. We winded up having to stay for over 4 hrs. They hooked him up to I.V's and gave him decadron, morphine, antibiotics and saline. I couldnt believe how much blood came out of his throat.......but the main thing is he is ok and home. The Dr. said If he bleeds again they may have to do surgery. Im praying that doesnt happen. :0(

Saturday, July 9, 2005 6:46 AM CDT

Hi Everyone. Who knew that a hurricane that hasnt even made landfall in the U.S. yet, predicted tomorrow near Alabama/Mississippi area, would cause so much grief for S. Fla. We are experiencing rain sqwalls, which are bands that surround the eye of the Hurrican. They spread miles and miles outside the eye of the hurricane and move along with the storm. When they pass over, you'll have calm weather, but very gray skies, then all of a sudden out of no-where the winds kick up, rains beat down, electrical wires outside slam together and you can experience brown outs. This is where the lights dim and then go back on, dim and then go back on. Then the rains stop and the winds die down, only to have them kick up again at any time. This happens over and over and over again until the storm is past. Along with that is the tornado warnings. About brown-outs, A LOT of people dont know but when this happens, you should unplug appliances or they could voltage out. We had that happen last year right before the power went out with Hurricane Frances. We actually had a power surge that fried our refridge. So, we ARE being pelted by horrible weather. For those North of us, I would say you dont have to shutter up, but if you can take things inside do it NOW!! Our poor screened in Gazebo is taking a beating. It may end up in my neighbors yard before these Hurrican bands pass thru. I have to go for now, Another wave of bad bad weather is coming. You can see the wind kick up and the rains start out of no-where. Hurricane thought for the day Dont underestimate the power of Mother Nature! Till later. Bye~~** UPDATE ON US~~~***AS OF NOONTIME- the rains have stopped and the winds died down. Thankfully. I hope everyone that lives in Alabama and Mississippi will be safe from Dennis. Till then......Lin~*

Tuesday, July 5, 2005 5:49 PM CDT

Hi Everyone!!The 4th of July was fun!! The fireworks were pretty! Jimmy & I Watched them from his bedroom window, like we do every year! The kids and dad ran the firework show from outside. Jimmy was happier today as you will see by the cool photo I got of him. He's in his room playing with his bucket of toys!! Hopefully we wont experience the Hurricane activity thats brewing out in the waters off of Cuba. We live in S. Fla and we got pretty beat up from Hurricane Frances last year! Wish us lucky that Hurricane Dennis doesnt become a Menace!! Love to our our friends and family in cyberland~~** Lin & Family~* Hugs from little Jim~*

Sunday, July 3, 2005 Jimmy's George W. doll signs a thumbs up~*

We're Getting ready for the 4th of July festivities. We'll be staying home, but dont let that fool you. We have a barbeque planned......STEAKS for everybody! A special cake baked by me, mom....yippeeeeeee. (Jimmy if he could talk)....I may be asleep now but dont let this slumbering face fool you. I will be watching the fireworks from my bedroom window, like I do every year!! My brother Mike and my Hey-Ho-Daddy-O set off pretty rockets for me to enjoy. Mom and sister Amy hang out with me, inside. Sometimes my sister shoots off some stuff too outside!!!! :0) We may do some tonight. Well, thats all for now. Thanks for checking in on me..........Love, Jimmy~* (narrated and written by Lin~* Jimmy's mommy-O).

Saturday, July 2, 2005 5:41 AM CDT

The scans looked good!! The Dr. said no tumor regrowth, no shifting of midline, CSF looked good. He could see the area where the tumor WAS, but no changes! Thank you GOD~* Thank you all for your prayers. We are scheduled to see the Dr. again in Dec. Pretty good, huh? We will still see the lady Dr. every 3 mths. but the Dr. we saw yesterday is the neurologist, and if he doesnt want to see us until Dec. Thats GOOD!! What a great pre-Christmas present. He said if we need to come down, by all means come, but otherwise its Dec. Sigh of relief here. Jimmy needs some extensive blood work done, but that can be done locally. Then the results sent to the Dr. ~*Cute story to share~~** Everytime we see the neurologist,any Dr. or Dentist for that matter, we bring treats. Cookies or candy, etc. Well, yesterday when I ran into the hosp. to grab Jimmy's films for the visit, I saw a box of chocolates in the gift shop, and Im thinking.... "I'll grab them for the Dr." Back outside, Jimmy spots the box in my hand as I get back into the van. He doesnt talk remember, but he's flapping his hands and squeeling with delight as if to say "Oh boy candy, candy, oh boy!" I'm thinking no way Jose. Hyper kenetic city if I start feeding him chocolates on an empty stomack. We didnt have lunch yet.......so we get there and he spots the chocolates again as we're walking in to the office. I place the candy on the Drs. desk with some forms that needed to be filled out and again, the same squeeling and hand flapping at the site of the candy box! Jim & I could hardly contain ourselves, we were laughing at Jimmy's excitement. We were just happy to see him "happy" Seize the moment!! Hubby says "open the box and just give him one!!!!" I tried to say no, but Jimmy understood what daddy-o said and his face lit up like a lightbulb. So, Here's me saying...."well ok, just one!" RIGHT!!!!!! Jimmy takes the piece of candy and finishes it in about 10 seconds. I tried to hide the box, but all that was doing was making Jimmy-Joe laugh. He was prob. thinking. "Yea mom you try to hide the box. Do it especially while I can see you." I looked like I was trying to hide Easter Eggs!! lol. So, I give him another piece and then another and another. Well, pandamonium sets in and now we're feeling guilty and maybe we should eat the evidence!! Big Jim eats a piece and finally my sweet tooth couldnt take it anymore.I grab one and shove it into my mouth! ONE lonely piece of candy left amongst all the brown empty wrappers~* In walks the Dr. and here we are,all sugared up with brown lips. Jimmy practically covered in chocolate. (sorry I forgot my camera!!) The Dr. spots the candy box and before we can tell him its almost empty he opens it. We all laughed out loud and I said "In all the yrs. that Ive been bring you treats, this has never happened!!! Im so sorry!" He just laughed and said "its ok, enjoy yourselves." He was probably thinking these people are crazy!! I was too embarrassed to leave the box with one lonely soldier in it. So when we got out to the van I gave it to Jimmy!!! What a riot. I think the funniest part was.....if we were being watched, the image of a grown woman running around the Drs. office, which is only a cubucle in size, with a box of candy while her hubby pointed at different spots to hide it in. Meanwhile Jimmy laughing so loud, clapping his hands and screaming, you wouldve thought what in God's name is going on in there!! Next time I better bring 2 boxes!! Ya know Im SO happy for these funny moments, because so many times we have sat in that office freaking out. Waiting for the Dr. to tell us what to do. What to do for Jimmy. It was kind of nice to be able to laugh a little. Take the time to just be normal. Do something crazy. Step outside the box called life.... and into the box of candy!! HEAD FIRST!! lol. It was totally provoked by little Jim, executed by him and we learned to laugh a little. Even while you are waiting for test results, you can stop the world a minute and laugh and sing. Jimmy really showed us that yesterday. In his times of pain, We cry with him and in his times of joy we rejoice. I guess thats what its all about. Another lesson Jimmy has taught us. Seize the moment. Have a great day and thank you everyone for always visiting Jimmy's web site and leaving nice messages. We love you~* Lin~* HAPPY 4th OF JULY~~**~~**~~** Will update again REAL soon. Hopefully with new pictures this time.

Friday, July 1, 2005 6:16 AM CDT

We'll be leaving for the neurologist around noon. We managed to get Jimmy to eat and smile yesterday. Thanks to Katia's mom Tracy!! Thank you Tracy for helping out with what to do when pain meds dont work!!!! Our Dr. agreed on the new medicine added to the old. Jimmy-Joe sat on the couch eating chips watching Toy Story about 2 hrs after the new med was given. We also got him into the hot tub!! I will post more later when we return from the Drs. Much love to all.~* Lin~*

Thursday, June 30, 2005 7:40 AM CDT

Hi Everyone. Jimmy in his baseball cap from Gloria. Thanks Gloria, if your reading this!!! Jimmy's neurological visit is tomorrow. We bring his scans down to see the Dr. Then he'll examine the scans and Jimmy & let us know where we stand. Somedays are still better than other with Jimmy's body spasms. He gets so rigid and stiff. The HOT TUB does work, but the Florida weather has been putting a damper on getting him in there. The tub is on our back porch and you cant go in it when its lightening and thundering, so......its been a few days again where we havent used it. :0( Well, I'll keep this short, until after tomorrow, then I'll update on what the good Dr. says..till then much love, Lin~*

Picture above... Jimmy a few days after the MRI. Still having spasms from flair up with Dystonia.. He's wearing his new baseball cap from Gloria~*

The MRI is over. It was going well until Jimmy opened up his eyes in the machine and pulled his I.V. out of his hand!!! He was asleep and very sedated, the anesthesiologist said this happens every now and then, but we werent expecting this with Jimmy. He is given versed first and then completely knocked out for the scans. The scans were held up until the Dr. could run another I.V. into his other hand. 10 min. later he was asleep and being scanned again. :0) I was happy about that. It was scarey for me because I was perched in a tiney waiting room across the hall where I could see and hear almost everything. They do shut the big door of the MRI room, but they do that when he is completely out and the machine is running. I got a little scared when I heard the Dr. yell, "Open the door". Then, I could see everyone rushing around and I thought, Oh no whats happening?????? But everything went well after that scare. We have to bring the scans in to the neurologist on July 1st. so I will be completely at ease after that. For now we wait. The good news is, I have always found with MRI scans,is if they let you go, then things will most likely turn out well. Thats what we're hoping for again this time. Jimmy's blood pressure was very high the last few days. His pediatrician wants us to chart it over the weekend and if its still high, we have to take him to a nephrologist. I thought "why a kidney Dr." but the pediatrician said in kids Jimmy's age, when the pressure is up like that, they question the kidney's first. I wouldve thought a cardiologist, but he said no. So, we'll see whats up with his blood pressure. keep thoes prayers comin' love you all. Lin~* Jimmy's mom~* (see new pics from today).

Friday, June 24, 2005 5:51 AM CDT

Today is Jimmy's MRI of the brain. His once a year scan. Please pray all goes well.........must run because the scan is at 10. Love, Lin~* Jimmy's mom~~**

Sunday, June 19, 2005 8:07 AM CDT

~*HAPPY FATHER'S DAY*~ to all the dad's out there!!!! Some pics of Big Daddy-O Jim enjoying his Father's Day!! Bring on the cake!!!!!!!(we celebrated early because Big Jim had to go to Michigan to visit his mom. AKA gran-ma Michigan. :0) She's 93 yrs. old. He'll be back tomorrow......till then...........)

Tuesday, June 14, 2005 8:23 AM CDT

More sunshine and were otttaaaa here.......Have some shopping to do today. Till later, have a great day and come back and check on us. love, Lin & Kiddo's~*

Monday, June 13, 2005 8:30 AM CDT

The sleep continued as so did the rain here in S. Fla. :0) Poor little guy missed his sunshine and hot tub..then it happened...Sunshine beautiful sunshine after about 6 days of rain. Come see some pics on the photo page of Jimmy wide awake and stretching!! lol. Love, Lin~*

Friday, June 10, 2005 6:32 AM CDT

Hello. I might as well leave this pic of Jimmy up. He stayed up all night laughing and playing. I wish I knew what was going on inside that little head of his. So.....this morn. about 7:30 he decided it was "night-time" and went to sleep. Of course, dear ol' mom here will be up all day. The rains are coming in from a storm in the gulf and that means plenty of flooding. The bottom of our street gets super saturated. Not like I was going anywhere today......Amy had a Drs. visit which I'll prob. have to cancel.......I feel like a lethargic Vampira!! Lol. Coffee!!!!!!Bye for now till we get on a normal sleep schedule again. Hopefully by tomorrow......Ta-Ta. Lin~*

Sunday, June 5, 2005 6:22 PM CDT

Hello everyone~* The rains here in S. Fla. stopped for a few hrs. today so we got Jimmy out to the mall. As usual everyone else had the same plans. The food court was sooo noisey it almost started up his spasms again. The startle noises seem to set him off more than anything. I took off to Sears where it was quieter and hubby stood in the longgggggg line for pizza. Then we fed Jimmy down by Sears! He never got his Mrs. Fields cookies. He really needed to get home and I knew we had one more stop to make. He has been asleep since we got home 3 hrs. ago! The trip really tuckered him out. He is in his wheel chair when we go out so, at least he can relax and enjoy the ride, or I dont know how we'd get him out like we do. The rains have started up again, so I guess I should go. If your getting sun anywhere in the US??? Send some down South!! lol. Thanks for stopping by Jimmy's site and leaving messages in his guestbook~ God's blessings to you ~* Lin, Jimmy's mom~**

Friday, June 3, 2005 sleepin till the sun comes back

Hi everyone!! The kids are finally out of school for Summer break! The weather hasnt been too nice. Rain, everyday. Jimmy hasnt used his hot tub in about 5 days and his spasms are back with a veagence. The tub is situated on our screened in back porch, but lightening and thunder arent really the best weather conditions to be in water around. So, he has spent Sunday thru yesterday pretty unhappy. The tylenol with codeine helps his legs, but Im hoping the weather clears up soon and he's back in his beloved hot tub. I want to try to get him out to see the new movie MADAGASCAR~* Looks like a great movie for kids and adults. Mike and Amy want to tag along too, which is GREAT! Very rarely do teenagers want to "hang" with their parents. lol. I'll have to update on how it turns out. Now, normally Jimmy makes it through about 3/4ths of a movie. I had to wait 6 mths to find out how Shrek 2 ended. lol. Thankfully the movies come out on video after awhile. Then we can see the endings. Well, gotta run for now. Hope everyone is having a great week. Talk soon~* Lin & Company~~**

Tuesday, May 24, 2005 2:54 PM CDT

Hi everyone. Jimmy finally got friendly with his new Hot Tub and I got a few pics of him enjoying the water. Thank you to Teri, Beth, Karen, Donna, all the kids who helped make the day a happy one. Harold for his help. This tub is so what the Dr. ordered!! Thank you again to everyone!! Love, Lin~*

Sunday, May 22, 2005 6:41 AM CDT

The hot tub came and it does NOT look like the one above. lol.The festivities were beautiful. My hubby went and took pictures for me and passed out pics of little Jim. he wasnt feeling well yesterday and didnt make the walk, but the hot tub was sitting there waiting for one of us to show up, anyway. Harold a very nice man from their church got the tub back to our house, as part of the plan, and hooked everything up. ITS great! The event brought many people and everyone had a great time. The kids made a banner for Jimmy, which they each signed. It will be a treasure for ever. Each name signed and little pictures drawn of Jimmy!! How cute is that. The tub came with beautiful towels and tub toys, for the kids and grown ups. :0) A big handful of about 20 balloons grace our living room for Jimmy. What a wonderful surprise! Everything was so beautiful and I will never be able to thank the parents and kids enough. Stop over at the picture page and see some more pictures of the event. Love, Lin~* P/S I AM HAVING PROBLEMS ADDING new pics. Please bear with me. I can only upload 1 pic at a time on the picture page......

Thursday, May 19, 2005 9:46 AM CDT

Hi everyone. Good news on the homefront in reguards to Jimmy's hot tub therapy. Because it is hard to get him out of the house for water therapy, a local agency got together with a church and they are actually doing a walk this Saturday for Jimmy. They supposedly have it set up where the hot tub is actually going to be at the park, and the fella who is in charge of getting it there will follow us home with it on a flat bed. :0) I am so thrilled and beside myself with thanks and gratitude, that I'm pinching myself to make sure I'm NOT dreaming. I will take pictures of the event. The park is pretty far away from our home , so we are praying Jimmy can make the long drive to see everyone. If not Big Jim will have to drive up and have the man follow him back here, but we really want everyone to SEE Jimmy~* My prayers for Saturday are that all goes well and we do not get bad weather, as a strange tropical storm is brewing in the Pacific and it looks like its heading East towards S. Fla. Maybe....................If this happenes the walk will be cancelled. I hope the weather and Jimmy cooperate. :0) Thank you to Teri & Beth, and everyone else involved in making this hot tub a reality for Jimmy~* CHECK OUT the picture Dylan, Amy's boyfriend made of Jimmy in his "hot tub". lol. Im hoping its a bit more modern than their idea of what the hot tub will look like. Kids~~** Ya gotta love them.

Sunday, May 15, 2005 6:29 PM CDT

Hi! We just had the birthday party for my nephew, Ravi. It was a lot of fun. Jimmy slept the whole time and I missed his presence...he did wake up while everyone was having cake, so at least he ate his dinner while everyone was still here. I have some new pics which I will post tonight of the party!! See ya all soon.......Lin~*

Sunday, May 15, 2005 8:29 AM CDT

Hi everyone. Today we are celebrating my nephew Ravi's 12th b-day at our house. Its just so much easier to have the parties here. Its really hard traveling with Jimmy. My sis and my parents live about an hour from here......so our house is designated "party" house. lol. I changed out the pictures from the Mother's Day feast!! All that food. Looking at it again was giving me a stomack ache. Jimmy has been ebbing and tiding with his spasming. Right now he's sitting in his chair watching Toy Story!! Mom here better get on the ball here and get the chores done before the troops come in. Even though Big Jim will be barbequing, I still have baked beans to make and some fun jello deserts. Things like that. Gosh, I sound like a real suzie home maker. lol. check back for more pics. ..above Jimmy watching Toy Story with great intent. Sorry about the blurry...I still cant take pictures without shaking.. :0) Love, Lin~*

Tuesday, May 10, 2005 8:19 AM CDT

Ok..as promised, and because so many people emailed me and asked for more........here are a few more pictures of the Mother's Day feast!!! You liked the picture of the ribs SO..... here's one of the corn muffins.....The left overs are gone but the memory remains. Hahaha! Enjoy!! Love, Lin & Family~*

Sunday, May 8, 2005 7:41 AM CDT

Well as you will see from the following pictures, the Mother's Day event went GREAT! We ate and the kids made bracelets for me for Mothers Day. (My sister has a bead business. The stuff is georgeous!!) I have more pictures which I will put up tomorrow. We had a blast and there was soooooo much food. Jimmy was up and around most of the time but then settled back into his room to watch Sponge Bob!! He enjoyed the food more after everyone was gone, I guess it got quieter and that was fine with him. His favorites are the corn bread muffins, sweet potatoe pie and fries. Gosh, If you ever get down to S. Fla. you HAVE to get to Tom's Ribs. They are in West Palm Beach now. They moved from our neck of the woods and they are the best in barbeque. Mild sauce that the whole family can enjoy! Today is Sunday so bring on the left overs. lol. Much love, Lin & Family~* P/S after I updated the journal this morning, the kids made me breakfast!! What a nice treat! ~~**Happy Mother's Day to all the mom's today**~~

Saturday, May 7, 2005 8:53 AM CDT

Today is the day before Mother's Day! We are celebrating big today because a certain Rib Resturant is closed on Sunday!!! We are big Tom's Rib's fans here in S. Florida! If you've never tasted Tom's rib's you are in for a surprise feast! They closed for about a year and have now reopened a few towns north of here. So, my sister & her crew and my parents and my brother & his fam. are picking up the ribs on their way to MY house!!!!! Yahooo its a rib and collerds and sweet potato pie feast. Southern barbeque style! Now Im not talkin about proper eatin style. lol. BUT I will take pictures and post them later on after the family gets here. Much love to all & please tune in tonight for some great pictures of the Koenig Family Mother's Day Rib and Barbeque Hoe Down Party Celebration. LOL!! Love, Lin~*

Thursday, May 5, 2005 8:01 AM CDT

Trucks, Buses and Automobiles....is that how they say it?? MY van is on the fritz right now. Its being towed away as we speak. Transmission problems. No warrenty....so, we'll see how that goes. Mike's car is acting up. His goes in next! Blah! Its the week for car problems, I guess. Jimmy is "too cutely" sitting on the sofa watching Sesame Street eating cinnamom toast crunch!!! Yup, he still loves that big bird!! (Barney the dinosaur is first place, but he likes Sesame Street too). I do too!! lol. Well, not much else to report. We are sooooo use to staying inside all the time, that it really doesnt bother me to NOT have my van. BUT, next week we have more Drs. appt's so I have to have it back. Jimmy's MRI of the brain is due again. I'm waiting till Mike and Amy are out of school for the summer, then I'll schedule that. All in all we are trying to keep things quiet around here and looking forward to Mother's Day! We'll stay home and have family over for dinner. Much love to all and Happy Mother's day to all the Mom's out there. Love, Lin~*

Saturday, April 30, 2005 1:38 PM CDT

Hi Everyone! We managed to get out to Target today with Mike, Amy & Jimmy~* Yippeeee! lol. Jimmy seems to enjoy the outings more when Brother and Sista are with us! I do too. Teens can be fun too. I like to watch as Mike heads to the music and CD dept. and Amy looks at shoes and cool socks. Its hard to believe that Mike is 18! Amy is 15 and Jimmy pulling up the rear at 13. He will always most likely be dev. delayed in the area's where he has the brain damage, but its way cute that for a kid who cannnot speak, he is lookin at all the cool toys in the store. Just like any other kid! You dont need him to talk to tell which toys he'd love to take home with him the most!! lol. We got him a book today. The ones where you press the buttons and they talk. He loves Sponge Bob, so he got that today at Target! Gotta love that store. The one stop shop. We're back home now and Mike and Amy have a birthday party to go to. I have LAUNDRY!!! Yea! Fun for mom. Oh well. I just think I could be beating these clothes on a rock somewhere. Could be worse........till next time. Take care. Love, Lin~*

Monday, April 25, 2005 6:34 AM CDT

Jimmy's Drs. appt went well. He slept all the way there and all the way home. He did manage to give Dr. Lucy a "high 5" and a smile before we left her office. She said its ok to give him an extra baclofen or an extra zanaflex during his really bad days. The spasming I am talking about are the ones that render him twisting and in pain on the floor......those are still coming maybe once every 2 days. So, I will do what she says and see what happens. Its touch and go. The worst is when your child is in pain and you cant wave that magic wand over them and make them better. I do PRAY and I pray a LOT and I know God is listening and watching and leading us in the right direction with the good Drs. we have now, so..... Today Im going to try to get him out to Target and zip through Mickey-D's with him. How he loves those burgers!! :0) Gotta try to get him out on his good days. Hoping today is one of them......On another note: prayers to all the caring bridge kids and make a child smile kids~* I should mention them all more often. They are ALWAYS in our hearts and prayers and I just wanted to mention them on Jimmy's page...too many to name each name, but you guys know who you are. Much love and many prayers to all of you fighting your illnesses and to your mom's and dad's and siblings who are with you all the way. Prayers & thoughts to those who have gone on before us.....Much love, Lin~* Jimmy's mom~*

Tuesday, April 19, 2005 6:19 AM CDT

Hi all~~ Still going day to day with Jimmy. He has a Drs. appt on Thrs. to check those muscles in his legs and see why he is still having the spasming on and off. I didnt get any good pics of the birthday party on Sunday. (Daddy's and gram-pa's) My nephew Deven fell and cracked his chin open on Aunt Linny's tile. I felt awful. He got 5 stitches. I told my sister I'll probably be buying him his first car in about 12 yrs. I felt so guilty. He was just playing and running around and splat! I know it was an accident but Im sure he will always remember falling on Aunt Linny's floor. As Lucy would say UUUUUUUUUG. Then Big Jim (daddy-o) was sitting at the table eating and the chair leg broke under him and he went splat on the floor. He started yelling "Ouch my chin", and of course we all thought he had cracked his chin on the table, but alas, we found out that he was ok. We all got a good laugh off of that, but is there ever a time when things just go smoothly around here??? Lol. These family gatherings are getting wackier and wackier every time. I can hardly wait till the next birthday party, lets see that should be in a few weeks. lol. Its really fun having everyone here, but not when people are getting hurt........Oh well, such is life I guess. Till next time. Thanks again so much for the prayers and well wishes for Jimmy. He loves the messages in his guestbook and they make our day. Talk soon. *~Lin~*

Friday, April 15, 2005 7:06 AM CDT

Here we are 2 weeks into the botox shots and we are seeing Jimmy's spasming subsiding a little bit. He is eating more and smiling more. But still needs the tylenol w/codeine when he has the spasms yet.... The calf muscles, where the botox was injected, do not seem as stiff if and when he spasms. (The spasms are a result of the central nervous system damage from the brain tumor, so they will never "go" away.) BUT we may someday find control......100 per-cent control which would be NICE!I am at a loss as to why he doesnt have that now, but feel that the water therapy that the Drs. are talking about would help greatly too. The Drs. have given me perscriptions for a hot tub for him, but the Ins. will NOT cover it, even though it is for home therapy. We tried a local organization and we are praying they will be able to help. We would require a 4 man tub because he is so big and it would require at least 2 people in there with him to make sure he doesnt get into trouble. It sounds so funny to be praying for a hot tub, but the warm tub soaks help his spasming muscles and contorting body.........He takes about 4-5 baths a day and if we had a hot tub, it would be so much better for him , the jets alone would give him longer relief. The bathtub isnt really doing it for him.....But, Till then we carry on...............This weekend we are having a big barbeque bash. Its Big Jim's birthday and gram-pa's too. Living in Fla. has its upside weather-wise. But, hopefully it is warming up in other parts of the country. I have cyber friends who live up North and they said they really had a bad winter. Hopefully the ground hog did his job and the warm weather is on its way. Much love to all. Peace, Lin~* Jimmy's mom~* I'll try to get pictures Sunday and update Jimmy's photo page.

Saturday, April 9, 2005 5:51 AM CDT

Here we are a week and a few days after having the botox injections into Jimmys calf muscles. We would have thought he would be feeling better by now......but he is still not back to himself. The spasming continues and sometimes seems to be worse. We are treating these violently painful contortions with tylenol with codeine right now. He seems to be ok and rests comforatbly after he has the tylenol. He still gets his other meds too. Im hoping to get a smile out of him today!!! I miss those smiles the most........Will write more when he's feeling better. till then, thank you all for always checking up on Jimmy & leaving messages in his guestbook. Love, Lin~*

Friday, April 1, 2005 12:57 AM CST

Hello everyone~~** Yesterday was Jimmy's Drs. appt. He had 4 shots of botox to his calf muscles. The hardest part was him having to be stuck 4 times. The botox hurts, but it will help him in the long run. The idea is that when his muscles involuntarily spasm, the muscle will be weak from the botox and they wont contract so hard. He will still be able to walk, etc. He wasnt able to walk yesterday and we had to "ressurect" his old wheel chair for him to pad around in inside the house yesterday. He seems better today. Just looks tired. The botox is given every 3 mths. Thank you all for always checking in on Jimmy~* Your prayers are soooooo appreciated. Love, Lin~ Jimmy's mom~*

Saturday, March 26, 2005 10:30 PM CST

Well, here it is Easter Eve! The E.B. will be coming soon. (Easter Bunny!). The kids colored eggs, even the BIG kids, lol. Check out Jimmy smiling at his eggs. Dont ya just love the t-shirt?? "Up past my bedtime!!" How true how true. To everyone. ~~** Happy Easter**~~ May tomorrow be filled with family and fun. Love and God's Blessings. Lin~

Wednesday, March 16, 2005 10:46 AM CST

I have received a few orders for the C.D. entitled Language of the Angels. Thanks to all. Im so proud of the cover pic and the inside design. It was a family project and came out real nice. Jimmy is currently in a lot of pain from the Dystonic spasming. We are waiting for his botox to come in to the Drs. office. (It has to be ordered and cleared by Ins. first). Then he can have it injected into his calf muscles, which are so so tight right now. Please pray for the botox to come in SOON!!! In the meantime he is on tylenol with codeine and spending a LOT of time in his P.J.'s just chillin'. I miss my little buddy when he is down and out. Im trying to keep my spirits up and looking forward to Easter my fav., time of year, besides Christmas! Much love to all. Peace~* Lin

Friday, March 11, 2005 9:35 AM CST

Hello everyone. Above you will see the C.D.'s cover photo of Jimmy. Our single that we wrote and recorded is entitled "LANGUAGE~OF~THE~ANGELS". It is a song that is in honor of Jimmy. This pic was taken of him when he was 4. It has special meaning because it was taken by my oldest son Mike who was about 9 at the time. We were on vacation in Bush Gardens and Mike kept taking pictures at random with our poloroid. The picture he took of Jimmy sitting by the window was so amazing because it wasnt suppose to process the way it did. (The original had brown and tan hues). Because of the aging of the photo I had to touch it up, via computer programs, and came up with this beautiful black and white one today. I clicked on sunburst and the lighting became so perfect, so appropriate that it would shine through the window over Jimmy's head. The original picture was used in a book that our local college published for children with handicaps. The Dean said it was such a thoughtful picture. Making one only imagine what a child who is totally mute might be thinking as he tries to catch the raindrops dancing on the window. (It was pouring that day and thats why we were stuck in our hotel room.) Thoughtful the picture is indeed. Thank you to all who come and visit Jimmys web site often. We are trying to sell this C.D. for 5 dollars a piece. Jimmy as most of you know, is in a hosp. homebound school program. His teaches come out to the house and teach him. Our responsibility is to make sure he has some educational supplies here that he can keep. The school does supply crayons and markers, etc. but we like to have his own books and things on hand for them to use too. The expense was becoming high so, we decided to Copy write his song and sell it for his school supplies. All the money goes into the making of the C.D. and the printing of the picture, etc. along with postage. About 3 dollars for all of that. The other 2 dollars goes into buying supplies for Jimmy! If you would like a sample clip of the song, I can email it to you. Thank you for your support and love. Till next time.............Much peace. Lin~*

Sunday, February 27, 2005 8:16 AM CST

Hello everyone. Jimmy has been doing better. Thank God! We pretty much kept things quiet for 2 weeks. Its hard with 2 other kids in the house, but we did it!! :0) The pic you see above is from our C.D. that we made, its in honor of Jimmy. Its a song entitled "Language of the Angel's". I wrote the lyrics and Jimmy's daddy sings and plays the guitar. Its copy written and ready to go.....If anyone would like a sample of it please email me. If you'd like to purchase a copy its 5 dollars. Just email me with your mailing info and I can get one out to you. I would love to add the song to Jimmy's caring bridge site here, but I DO NOT know how to do that. If anyone who has a caring bridge page could advise me on how to do that, I would appreciate it so much. Till, then God's blessings your way. Lin~*

Tuesday, February 15, 2005 7:54 AM CST

"Check me out~~asleep & covered with Valentines Day balloons! Boy my family sure loves me." Love, Jimmy~(written by clever mom~~Lin). Hope everyone had a day filled with a lot of LOVE!! We sure did. Mike, my 18 y.o. took his girl out to dinner. Before leaving he asked dear ol' mom here to inspect his card, which he made out. Too cute. It had such a sweet message, Im surprised he let me read it. :0) Ahhhhh's here. lol. He bought his girl candy and flowers too. Amy, my 15 y.o. got to go out with her main squeeze to dinner too. They opted for Japanese, while Mike took his girlfriend to a more popular place. I think Flannigans. Or they ate at another quaint Italian resturant. I didnt want to ask him too many questions when he got up for school this morning. lol. Big Jim and I watched Shark Tales with little Jim, which btw if you havent seen it you have to!! Its very funny!! Loved all the famous people's voices in it. Will Smith, Jack Black, Robert DeNiro, Angelina Jolee, to name a few. It was funnyyyyyyy!!! Gotta run. Hope you liked little Jimmy's pic. I captured him sound asleep. Couldnt resist!! Love, Lin~* Jimmy's mom~*

Tuesday, February 8, 2005 7:42 AM CST

Hi Everyone!! Were back from our Disney trip. Here we are with Shrek in Universal Studio's. We had a great time. The 3 days went real slowwww, thankfully. It was Mardi Gras while we were there and we stayed at the Hard Rock Hotel, which was a LOT of fun. Especially for Mike and Amy!! How those teens love Rock n Roll. Jimmy enjoyed his first out door Rock Concert, which winded up being "Twisted Sister". Isnt that funny!? A loud rock concert. The guys in the band were very nice and twice mentioned that they were there for the Hurricane relief for Fla. and the Asian disaster relief. What a great bunch of guys!! Jimmy fell asleep during their concert, I guess he was very tired, he just curled up in his wheel chair and fell asleep.....It was a fun time. Now we look forward to Valentines Day, Easter and all the other Happy Days & Holidays that God has to offer. TTYS~

Sunday, January 30, 2005 8:18 AM CST

Hi! We went to a Greek festival yesterday! Jimmy enjoyed himself with the hot dogs and cotton candy! I forgot my camera!!!! How could I be so ^%&$#@* dumb. But yes folks I did leave it home. Next Fri. we go on our family vacation to Disney. I will remember to bring my camera.....I will remember to bring my camera!! lol. The festival was right up the street about 2 min. from our house at a Greek Orthodox church, which happens to be our..drum roll here........Pediatrician's church! Dr. Paul. We didnt get to see him this time as rumor had it he was in the kitchen cooking! It amazes me how Drs. are real people too. lol. Imagine treating sick kids all week. Making decisions on lives, etc. everyday.........and then "He's in the kitchen frying up some sausage"!! Yikes!!! On another note...the good news is my stitches come out on Tues. All 3 of them. 3 you ask?? Well, clutz here pulled 2 out. I fumbled the OJ, which decided to take out the bowl of spagetti and the pot of sauce in the refridge. Instinct counts, because knowing I had the bum digit, I knew not to try to grab it, but I DID!! Rip! Tear! After seeing the orthopedic Dr., who by the way only does hands, he refused to take the other 3 out. Explaining that the incision was close to the bone, etc. The stitches MUST stay in!!! Whaaaaaaaaaa!! So, here I am bandaged up again. 2 more days to go on that! Well, better run, talk to you all soon. That trip to Disney is lookin better and better each day!!!Love, Lin~*

Thursday, January 27, 2005 5:30 AM CST

Hi Everyone! The chill is in the air, even in S. Florida! Jimmy say's ahhh stayin warm, cant beat it. Love, Lin & Family~* Hugs from little Jim~*

Monday, January 17, 2005 11:44 AM CST

Jimmy apple seed. :0)

Monday, January 17, 2005 10:06 AM CST

Mom in her cool P.J's bringin me a birthday present. Aint I a lucky guy????

Monday, January 17, 2005 7:31 AM CST

Jimmy lookin cute........

Monday, January 17, 2005 7:28 AM CST

Hi everyone. Were doing ok at the ranch!! lol. Its a little cold down here in Fla. but I guess we shouldnt complain. We celebrated my older boy's 18th b-day over the weekend. It was a pretty good time. Jimmy enjoyed the pizza!! I think today, we'll just take it slow around here and enjoy the kids being off for Martin Luther King day. Well, thats it for now. TTYS. Lin~*

Monday, January 17, 2005 7:05 AM CST

Hi!! Greetings from the sunshine state, which is FREEZING!! We are Not use to temps. in the 40's and 50's. Brrrr!! We have minimal warm clothing, remember. lol. Anyway, we survived the weekend, which was filled with a surprise party for my older boy Mike. He turns 18 this wed. so needless to say 4 pizza's one large ice cream cake and 12 teenagers later it was a success. The whole shin-dig lasted 2 hrs. tops and then they just about had it with the adults, hubby and I, singing happy birthday to him about 20 times, so they went their merry way. lol. Oh well, ya only turn 18 once I guess. Jimmy enjoyed the party to the max. I decorated on a budget and came up with a cool idea. If you use white throw away table cloths here's a cool idea. Look up interesting facts about the year the person was born. In Mike's case it was 1987. Then with different colored magic markers I wrote down all over the table cloths(remember only the toss away ones are good to use) I wrote all the little fun tid-bits all over the place. Ex: In 1987 Michael Jackson tried to purchase the elephant man's bones from a museaum. Also on this date Demi Moore married Bruce Willis. Then another tid-bit was #1 automobile.... The corvette of course. Pretty cool, huh? It gave the kids something to talk about while they inhaled their food. lol. The cutest thing was they all stood in the hallway of our living room eating their cake. Hubby and I were cracking up. They just sort of migrated into the hallway standing there and eating their cake and talking. lol. Oh well, teenagers, they're not meant to be understood on EVERYTHING they do. lol. But they're a great bunch of kids and Mike was surprised and happy. Jimmy and Amy enjoyed seeing him happy and it was a pretty good day all around. In Feb we're going up to Disney for 3 days to celebrate his b-day Florida style. Gotta run for now. Hope everyone is staying warm. If its cold down here its gotta be cold everywhere else. TTYS. Love, Lin~* Mom to Angel Lori, Mike-18, Amy-15, and Jimmy-13.~* Wow 3 teens in the house now, ouch our food bill....

Thursday, January 13, 2005 7:26 PM CST

Hello everyone!! Jimmy has been extrodinarily happy today.(Check out his picture above and you'll see that knowing look in his eyes!! Cool, huh?) I had a Drs. visit today For ME!! For...... ME, I must say it again. lol. Anyway, I always dred taking little man with me because I feel like its bad enough when he has to go to HIS visits let alone mine. Well, long story short we get in there and he is rockin' and rollin'. He's in his wheel chair humming and clapping his hands and rockin back n forth. Now this is an orthopedic Drs. office mind you. Everyone is on crutches, arms in slings, limping, hopping, hobbling. You name it. (Im there for a cyst on my bone on my finger. The doc needed to set me up for surgery and I had to see him for the preliminaries.) Anyway, After Jimmy's grand entrance everyone is now curious as to why this kid is Sooooooo happy!! Before I knew it I was answering questions and wishing so bad Jimmy could help me answer them. Such nice people, such curiosity. people started saying "How's it goin Jimmy-Joe?" The more people talked to him the more excited he got. I thought he was going to flip his chair at one point. Ya know people are really nice. When we left I told him he made everyone's day happier because they got to see him and meet him and talk to him. He is still smiling and rockin' and rollin'. Man I wish he felt this good everyday. Pray the spasms stay away!! Wouldnt that be awesome??? Talk to ya all later. Gotta try to get this kid calmed down for bed. I almost hate to see him stop smiling. Its been unreal, really!! really NICE~~**~~**Love, Lin~*

Saturday, January 8, 2005 8:26 AM CST

Hi Everyone!! While Jimmy enjoys Sponge Bob, I'll take a minute to update. Im pretty exhausted after taking down the 12 ft. Christmas tree that graced our living room. I am the type of person who would, if allowed, would leave it up all year! I did take the small 2&1/2 ft. tree from the kids room and put it on the fireplace step. It looks nice and Jimmy seems happy that at least we have that. He is a lot like me in that he can sit and look at the tree for hours. I take strands of non blinking lights and interweave with strands that blink. The tree looks like its flashing in tune with any song you put on. Amazing, huh? Maybe next year Laura Bush will invite me to come and help out at the White House. lol. (I would jump at the chance). Oh well, back to reality..........Jimmy's check up with Dr. Lucy went well. She said to keep him on the medicine protochol he is on. She mentioned his red count being high. I came home and figured it was time to make that appt with the hemotologist. Its set for this month. We'll cross that bridge. For now, Im just trying to enjoy the last days of the kids holiday break. The school brd. took back a lot of days they would ordinarily have off because of our Hurricanes that hit in Sept. Time to pay back, I guess. So, any days we have are really nice. Well, thats it in the Jimmy-Joe household. Not much else happening here. Till next time. Take it slow. Lin~*

Wednesday, January 5, 2005 10:26 AM CST

Hello everyone. Im patiently waiting for the Drs. office to call back on Jimmy's blood work from yesterday! Hopefully his red count wont be high. It has been and it seems thats not good. Oh well, we shall see. Hope everyone is getting into the New Year ok. Our kids still have off school. Its kinda nice. They are a help with Jimmy. Those extra sets of eyes helping mom out here sure is a blessing. Well, better run. House work calls to me. TTYS. Lin~*

Tuesday, January 4, 2005 11:01 AM CST

Happy New Year again to all. Today is Jimmys lab work day. His red count was high last time (?) So were having it checked again today. The New Year brings all those tests, Blah!! Hopefully it wont be higher. Otherwise he's doing well. 1-2 spasms a day yet, but the meds kick in faster, it seems. He's in his room right now making his happy Jimmy noises. Gotta love those sounds. I'll be back later..till then enjoy the day! Love, Lin~*

Saturday, January 1, 2005 8:39 AM CST

Happy New Year!! Jimmy waking up to the new year 2005!! Yippeeeeeee. :0) All's quiet at the ranch. We stayed home last night and had Chinese food. Mom here was workin on a head cold. The Chinese make a good won-ton!! I feel a bit better today! I think it was definately the soup. lol. On a serious note we sat and reflected, like so many, on the tragedy in Asia. We felt a little bit like that in Sept. when Hurricane Frances lumbered so close to our coast for a whole day before she hit our beautiful state. The hurricane was the size of Texas. We felt stranded, alone. Humbled by a storm that could very well take all of us with it. Thankfully we weathered the storm and now only have the memories of that night to think about. The crashing rain and winds. Waking up the next morning to find Jimmy wet in his bed and tiney leaves and water all around him. The winds were so strong they forced leaves and water inside the windows. Behind his hurricane shutters. Why him, why his room we asked. But thats the way storms are. They are a lot like illnesses. No-one special, or unlucky is chosen. It just "is". But we all have the will to fight strong against illness, or Mother Nature. That is what I pray for today and will continue to all year long!!! Pray hard for the countries that have to re-build. The families without loved ones. Maybe thats why Jimmy looks kind of somber as we enter 2005. I think I'll go give him a hug and we'll watch a Barney tape. He's too cute to look so sad today. I want to see him smile!!! Hug your kids and your families today. Im praying for God's peace. Love, lin~*

Monday, December 27, 2004 10:07 AM CST

Jimmy opening his birthday present!! Finally!! lol. Lin~*

Monday, December 27, 2004 8:28 AM CST

Christmas was awesome! Jimmy's birthday, which is the day after was great too. Only problem-o was little Jim decided to fall asleep right when the party was about to start...and slept....and slept. Till 8:00 this morning. He MISSED his whole entire party!! lol. BUT he obviously needed his rest since he was up till 1am Christmas night!!! He still has to open all his presents which are waiting for him on the kitchen table. He's taking it real slow this morning. Im sure he wants to keep mom in suspense wondering what he received. Well, I'll check back with all of you later. Much love, Lin & Jimmy & Family~*

Thursday, December 23, 2004 7:18 AM CST

Its the eve of Christmas Eve! How very awesome is that!!?? Mom got a picture of me with my Santa Hat on and Im SMILING from ear to ear as you can see! Merry Christmas to everyone. Check out the photo page and see my new cousin Jayden. I was there when he was born!! The day after Christmas is MY birthday so, I can bet his birthdays will be special too. What better birthday than in the month of our Saviors!? My sister Amy is also a Dec. baby!! But she's 15 now. Then my bro Mike is the New Years baby, born in Jan. He turns 18! Wow, and I'll be 13. Where does the time go. Well, see ya for now..........Jimmy-Joe! (update written by mom~Lin~) Thank you everyone for visiting Jimmy's web site. Merry Christmas to everyone and God's blessings this Holiday and always~ Lin~~**

Sunday, December 19, 2004 7:19 AM CST

The chill is in the air!! Wont be long now till St. Nick heads our way!!! I hope each and every one of you feel as blessed as we do this Holiday Season. From our family to your's ****~MERRY CHRISTMAS~**** Love.Lin & Fam.

Wednesday, December 15, 2004 7:33 AM CST

Hi Folks!! The good news is that the consult with the Hemotologist can wait till after the Holidays! His red count is high but NOT that high. The only treatment for this bone marrow disease is they actually take blood from the patient. Keeping the blood volume down keeps the problem under control. Medication can also be used, but we really have to consult with Dr. Singer first........so, once again.....keeping Jimmy happy and spasm free throughout the Holidays is #1!! He seemed so happy yesterday, I nervously grabbed the camera and tried to take a few pics of him (see picture page) my hands trembled terribly!! I'll try to compose myself next time. LOL!! I just love to see that boy smile........Happy Holidays again. Check back for more pics. Love, Lin~*

Friday, December 10, 2004 10:21 AM CST

Hi all was going semi-well, when the Dr. called about Jimmys blood work. Seems his levels were up in 3 places. These are signs that his bone marrow is making too many RED blood cells!! The Dr. said we have to run more bloodwork. He mentioned a disease called Polycythemia. I am in the process of researching it online. If anyone know's anything about this strange blood disease, please email me. Otherwise Jimmy seems unaffected by it. Showing none of the symptoms for now, except the blood work...........Love and warm hugs ~*~ Lin & Jimmy~*~

Wednesday, December 8, 2004 1:30 PM CST

Hello everyone! Jimmy has been ebbing and tiding again with his spasming. I have to remember to take it REAAAAAALLLLLLL slow with him over the Holidays!! Too much shopping is NOT good for him. Too much stimuli. His days have to include a nap. I am happy that he did get to see Santa last weekend. Tonight Eva the respite worker from the United Way will come to stay with him and I can get some more shopping done. Thats all for now. Take care. Love, Lin~*

Monday, December 6, 2004 9:30 AM CST

Zippadeedooda-zippedee-day!! Yippppeeeeee!!!We got Jimmy out to see Santa!! Who looks like their having more fun?? Mom, Dad or Jimmy??? :0) He was looking at Santa's elf with such interest because she was jingling those big huge bells of her's with such enthusiasum. Santa kept making us laugh, he should have been on the opposite side of the camera!! Well, this is it folks! The happiest day of the week! Check back for more photo's. Mike and Amy were with friends while mom, dad and Jimmy hit the mall. Oh well, next time Mike and Amy..........Love, Lin~*

Monday, November 29, 2004 7:52 PM CST

Good days...bad days.....we're putting the tree up and it should be done tonight. Jimmy's spasms have been on and off. Here's a pic of him from last year at the mall. Hope to get him there again this year! Gotta love that smile!!!!!Love, Lin~* Come see pictures on the picture page.

Wednesday, November 17, 2004 8:39 AM

Hello everyone. Jimmy's Neurology visit went as well as could be expected. The Dr. added another med. to his protochol. Its for anxiety, when the other meds dont slow down his spasming. This last week was up and down. We saw an increase in his spasming, but didnt want to say anything until we saw this Dr. He said the way the other Dr. is taking him off of the one med and putting him onto another may be why he is spasming so bad again. He agreed that I would have to call the other Dr. and discuss it with her. We thought the fact that Jimmy was getting another tooth, may have been the antagonist for the increase in spasms. Everytime he has a little discomfort, he stops eating and spasms more. Could be a tooth coming in........could be a cold, a virus, anything. But, the pediatrician put him on amox. last week to combat any infections that might be brewing. I dont know. Sometimes I get to feeling that I have to listen and hear what the Drs. are saying. Jimmy has brain damage. This is what resulted from that. But, I keep striving for control for him and a pain free life for him. I know I wont stop until I can achieve that for him. I love his pain free days and I cry with him when he is hurting. Dystonia is a misunderstood condition, but imagine your body twisting and contorting in pain and you cant stop it..........It breaks my heart, that is why I have to go on and try to find 100 per-cent control for Jimmy. Prayers needed. :0) Thanks again for checking in on us......Love, Lin~* P/S I know this is a long shot, but Sue Fox, Jimmys therapist, if you happen by Jimmy's site, Please Please email me. Ive been trying to find you. I know you moved to St. Pete, but thats the last I heard from you. Im trying to locate you...Love, Lin~*

Sunday, November 14, 2004 6:37 AM CST

Hello everyone!! We're all getting ready for Thanksgiving. A Lot to be thankful for again this year. Jimmy see's his neurologist on Tues. Its just a routine check up. Then we see the good Dr. after the holidays. We have been encouraging Jimmy to do more sign languaging. The teachers who come out to see him agreed this would be a good form of communication for him, since he enjoys the few signs he does know. Im self-teaching, so I can learn and then pass the signs onto him. I'm also learning tap dancing, which he IS NOT joining in on. I put the taps on him and he was more into scrapping his heels along the floor than anything. Sort of like finger nails on a black board effect. Lol!! But, he may want to learn, eventually... who know's. What's a better way than through dance to express yourself. For me its great exercise and my other 2 kids are laughing more when mom taps. Hey, with teens in the house I'll take anything I can get!! Hahaha!! Well, we're in a lull here, and thats GOOD!! So, I'll bid you all "a-do" for now. Much love, Lin~~

The scarecrow has shoes on!! :0) Wednesday, October 27, 2004 5:40 AM CDT

Hi! Hope everyone is doing well. We had a good day, finally...where Jimmy could get out a bit! See new photo's of the visit to the pumpkin patch! Jimmy had a dentist appt last week....NO CAVITIES!! Also his Drs. appt the following day. His meds have been changed a little. We are working with that to try to get him more relief with the painful spasming. It is such a God-Send that he is here. We thank God every single day for that. The quality of his life has been good up until the Dystonia. Even with all his tumors and surgeries, he bounced back. Still.....the uncontrollable spasms continue to plague him. Please pray for his Drs. that they continue to always research his illness and help us to help him. Thank God with us for Jimmy's strength and will to keep up the best he can. His good days are celebrated and his not so good days respected. When he's not feeling well, we all settle into a slower mode. keeping things quiet around the "camp" always helps. Quiet is good............I hope he can get to enjoy Halloween a little bit more this year than last year!! Reading his journal entry from last year, he was so weak he couldnt even get to go trick or treating. BUT, onto better days and a hopeful, positive attitude. The entries on the guestbook help so much. I read every single one of them to *~~Jimmy~~* Thank you! Much love to everyone. Lin~ *~Jimmy's mom~*

Saturday, October 9, 2004 6:33 PM CDT

A lot has happened since I last updated. We actually got hit with 2 hurricanes in a 2 week period. Thankfully the second one didnt destroy anything in or around our house. The first one left a few things in its wake, but thankfully we were all ok. Thank God!!~~Thank you, GOD!!~~ Anyway, Jimmy's botox shots to his left calf muscle didnt seem to work at all. So, the Dr. started him on Baclofen. Its another drug to combat his terrible involuntary muscle spasming from the Dystonia. He's on that, and we see a little difference already! Im praying he continues to do well. Thank you so much everyone for coming to visit Jimmy at his web site. I will be updating photo's soon. Love, Lin~~* Jimmy's mom~*

Monday, September 13, 2004 6:25 AM CDT

Just when you think nothing else can happen....A Hurricane named Frances hits your home town and causes some excitement and damage. On Sept. 4th a hurrican the size of Texas headed straight for us. Winds at 95-120 mi. per hr. The path? Straight for Fla. The movement of the storm as a unit was slow. She waited and waved to us from the Atlantic, almost as if she was taunting us. Watching and waiting from her ocean front view she stalled. The electric went out the night the Hurricane came close to the coast, and stayed out for close to 4 days.. As per usual, the worst of the storm was between the hrs. of 9pm and 7am the next morning. Hubby and I held an all night vigil in Jimmys room. The wind and rain pounded the roof and we thought we were "gonners" a few times. My other 2 kids had a friend each staying over, so that eased their uneasiness. Teenagers need each other in times like these. We had plenty of canned food, etc. but nothing prepared us for the aftermath. We had flashlights and batteries but the second day proved that batteries do not last longer than a day or so when used steadily!! I resorted to taking batteries out of Jimmys toys. I felt bad, but we needed to see in the dark. The morning after Frances we saw that the high winds had knocked over big tree's, exposing huge roots and tearing up sidewalks and lawns like fake props in a Godzilla movie. Thank God,our house sustained minimal damage. Jimmy's room took on water and interestingly enough rain and tiney leaves and dirt made its way in between the shutters and his bedroom window. The window was shut and locked!! He was damp in his bed when we checked him at 6am. He never woke up, just took the sheet off of the bed next to him in his room and covered his wet little self with that. I was in the room with him and never realized the rain was getting in. Imagine how aweful I felt. Jimmy is such an angelic child he didnt even make a fuss, just went back to sleep in his bed. Some of his toys got wet in his toy box but thankfully that was all. We really feared for our lives with all the noise that was going on outside, I felt like Dorothy in the Wizard of Oz!! We lost our 6 ft. wooden fence, but we were OK!! Jimmy's meds had to be doubled. He spasmed more during the Hurricane and hasnt stopped since. He is also holding his hands in tight fists, we dont know why...........but his Dr. is on call and she did raise his meds again. He is sleeping soundly like an angel right now, so we forge on forward, staying positive and praying for the end of Hurricane season!! I think its Nov. 1st!! Love, Lin~~ Jimmy's mom~*

Thursday, August 19, 2004 9:21 AM CDT

Hello everyone. Today is a wonderful day! The Drs. appt yesterday went well. The new lady Dr. has had experience with kids like Jimmy so she had a lot to offer. She is a pediatric specialist in physical medicine and rehab. for kids. We will still continue to see Jimmy's neurologist, who originally put Jimmy on the meds, but this lady Dr. will more or less monitor them closely and make changes as needed. It turned out that he could take more of the spasm meds and he may be able to have more botox shots to his calves and feet. A higher dose that is! :0) So, we forge forward and stay positve. We are ever thankful for the "team" we have now for Jimmy. The greatest Pediatrician Dr. Paul. The neurologist Dr. G., and the new lady Dr. who we call Dr. Lucy! I will post as we go day to day watching and waiting to see if the new dose of meds makes a difference and Jimmy is pain free/ spasm free!! Much love to all. Lin~~* Jimmy's mom~~*

Tuesday, August 17, 2004 12:20 AM CDT

We see a lady Dr. tomorrow for Jimmys spasming. She was part of a pain team management group. Supposedly she is into patients with Dystonia and C.P. she isnt a neurologist, but an M.D. Hopefully she will be able to guide us with Jimmy. The neurologist will remain our main Dr. with Jimmy but this gal will let us know what we can do to relieve his pain. Maybe a kind of therapy? Meds? Tomorrow I will know. Its been a very bad summer with his pain and his legs twisting. I have to seek answers and Ive been praying so much, everyday for God to help. Thank you also for your prayers for little Jim. The journey is long and hard but I know there will be answers in the end and hope and happiness for Jimmy. AND most of all no pain. I have to keep positive. Thanks for visiting and leaving such great messages. Love, Lin~~Jimmy-Joe's mom~*

Saturday, August 14, 2004 1:53 PM CDT

Well, we had the big neurological visit for Jimmy on Thrs. The Dr. did the EMG test and there was no nerve damage. That was good news but it doesnt make Jimmys muscle spasming stop hurting. The pain he has been experiencing has been horrific! To see your child laying on his stomack twisting and spasming and crying in pain, is enough to bring the strongest parent to their knee's. The Dr. gave us a perscription for pain management at our local Hosp. Jimmy will also remain on the regular regimen of drugs the Dr. has him on. The pediatrician gave us a mild pain killer for him to get him through the weekend. Then its off to pain management on Tues. We are also checking into hot tubs for him. The only therapy that really really helps is the hydro-therapy, or water. Also we will be massaging his muscles and doing some stretching with his feet. They are beginning to show the signs of daily twisting. Its very sad, and I wish he didnt have to have the brain damage from his C.P. and his brain tumor that he had. I want so bad for him to lead a normal life, or at least one that is pain free from the clutches of Dystonia. Thanks for checking in on Jimmy & keeping him in your prayers.~*Love~Lin*~

Saturday, August 7, 2004 8:23 AM CDT

Thursdays appt with the neurologist cant come soon enough. Jimmy started having pain again last night. Thankfully I still have a few pain pills left from the orthopedic Dr. he saw a few weeks ago. I can give him those till Mon. I'll call his pediatrician and see if he can call in something, if Jimmy needs it. This rollercoaster ride is hard on Jimmy and hard on the rest of the family too. People ask me what it is that ails Jimmy. The only way I can describe it is......he suffers from involuntary muscle spasms. Its called Dystonia. There's 2 ways you can get Dystonia, either your born with it, its genetic or you can acquire it through a brain injury or brain disease. Then its called secondary Dystonia. Thats the kind Jimmy has. His Dystonia is from his mild C.P. and the damage the brain tumor caused also. Now what happens with Dystonia, is the brain sends improper signals to the muscles, they twist, contort, stretch, HURT!!He never looses consciousness. In Jimmy's case the meds he is on work in that he may still only have a few spasms a day but they are little and he can work through them. BUT, for some reason when he has his flair -ups of the Dystonia, the muscle pain is relentless.. causing pain to his body constantly. He shuts down he wont eat. He wont walk. The spinal column is where you have nerve endings they are probably responsible for the transfere of the improper nerve signals. Thats why you'll see this "relay" effect. His legs shake his body stiffens.... he cries out. Im praying very hard today that he settles down and we can get him happy and playing again real soon. It seems like such a dirty trick nature has played on him and it is. Of all his disabilities, the Dystonic spasming is the worst! It takes my happy little 12 y.o. and robs him of his life. There arent too many things you can treat this with. Its a lifelong battle. Im hoping we can get him back on his feet soon. Thanks so much for your emails and messages. I'll keep everyone posted on what happens after the Drs. visit on the 12th. Till then take care. Love, Lin~ Jimmy's mom~

Thursday, August 5, 2004 7:33 PM CDT

Hi!! The results are in......the cystic lesion they thought they saw on Jimmy's scan of his prostate, was a birth defect! I guess when he was in the fetal stages of developement, when his organs were fusing, the prostate gland left a void or space in the posterior quadrant. Its ok. It isnt causing his pain, thankfully. So, after 4 weeks of diagnostic testing which looked at his bones, through a bone scan and 2 MRI's of his back and pelvis, also extensive blood work, its going to be put back into the lap of the neurologist. The thought now is that it is indeed Jimmy's myopathy, which is his mild C.P., and brain damage from his tumor in the cerrebellum. The Dr. might be doing another test which is called an EMG. Jimmy will definately be put on pain meds for the bad, bad spasms that rip through him and wreak havoc on his body for weeks. (Last time he was 5 weeks in severe pain). The anti-spasm drugs not even touching the pain. This time he will get relief!! Ive already given his Drs. a heads up so to speak and they know something must be done. He see's the neurologist on the 12th of this month. Hopefully they can set up pain management for when he needs it. I'll keep everyone posted. Much love and thanks for checking in on my little Jimbo!! Love, Lin~

Monday, August 2, 2004 9:51 PM CDT

The results from the MRI showed no fractures in the pelvis but it did show a cystic lesion in the pelvic area possibly in the prostate or right behind it. (?) It would seem that Jimmy would be kind of young to be having problems in his prostate gland, but the gland is in the pelvis area and this is where he had the bone tumors 6 yrs. ago.(In his pelvic/sacral area). We see the pediatric urologist Wed. at 3:30 in the afternoon. We will bring the scans and the reports from the radiologist. Jimmy may have to have an ultra sound to see what this lesion is exactly...........I will update after Wed. Thanks everyone for all your prayers. love, Lin~

Wednesday, July 28, 2004 6:23 PM CDT

Hi!! Tomorrow is Jimmy's MRI of his pelvis/sacral joint. They'll be looking to see if the small hair line fracture that showed on last weeks MRI is evident on the pelvic/sacral joint view, which is the flip side of the lombar. Wish us luck and please say a prayer for "Mr. Jim"!! Today while he was at home sleeping & the respite girl was with him, I ventured out to toys r us and got him the talking donkey from Shrek! Its worth the money! Its very cute and interacts when you talk to it. It was fun to see Jimmy smiling when I got home and gave it to him. I'll keep everyone posted when we find out more from his MRI. Much love and peace~~ Lin~

Saturday, July 24, 2004 9:31 AM CDT

We got the news on the MRI scans. The brain scan looks good, but the MRI of the back is showing an old fracture on the left sacral joint. This is kind of strange because his surgical site and screws are on the right side, so we were wondering "why" the left side showed a fracture? I called the radiologist myself and he told me he recommends another MRI of the pelvis, this time, as this will give him another angle to see things from. He saw what appeared to be the tail end of a fracture. Because MRI's dont show calcification, its hard to tell how old the fracture is. He thinks it might be a stress fracture from the screws in the right sacral joint. The joint with the screws is strong and solid, but because of Jimmys growth spurt since the surgery 6 yrs.ago, the strong right side may have put stress on the left sacral joint. We really wont know the degree of the fracture until we can get another MRI. I am scheduled to see the orthopedic Dr. on Monday. At that time we will talk about when Jimmy can have the next set of scans done. I will keep everyone posted. Thank you again for your prayers and well wishes. Till then we are keeping Jimmy calm and quiet. Pain relief is here if he needs it. Plenty of Disney tapes to watch and just spending quality time together.... Love, Lin~~

Wednesday, July 21, 2004 7:08 AM CDT

Well, Jimmy is still in so much pain. It seems to be radiating from his back. The pain meds cover him for about 3 hrs. and then he's wailing again. Tomorrow is the MRI. Thank GOD!!! I am counting down the hrs. They should get some good pics of his back and then they'll do the brain MRI, because its time to do that one. He gets the brain scans once a year! So, we'll do both area's. I will update after tomorrow. Please pray for Jimmy & for the Drs. to be able to help him. Life is on hold and Jimmy's happy little spirit is missed. When he is not happy, the whole house seems to feel it. Thanks for everyone's prayers and messages on his guestbook. Love, Lin~~

Sunday, July 18, 2004 4:57 PM CDT

Jimmy is just about done with the steroids that the orthopedic Dr. put him on. I dont think they helped at all. The pain meds do, so every 3 hrs. when he howls in pain we give him more. its draining on the family and I find myself crying out the word "WHY!!!???". It echo's through the halls of our house and its as if I wait for a loud audible answer!! I dont know why Jimmy is suffering. All I can do is pray that we can get him in for an MRI of his back and figure out why he is limping and crying. Its not anything neurological, and at this point the Drs. are thinking pinched siatic nerve in his back. He has those pins back there from his surgery to remove the tumor 6 yrs. ago. We might need to see them on a different scan. A closer look.............I am at my wits end. All I know is he wont eat, he is crying and or sleeping most of the time. My prayers have been many and my faith , I am trying to keep it strong! All I know is that when your child hurts you hurt too. There is NO denying that! I will close this with a prayer that our Lord help the Drs. find out what is wrong with our sweet boy. Help us to help him, guide us all in the right direction and help Jimmy get better. Love, Lin~

Thursday, July 15, 2004 7:13 AM CDT

We went to the Drs. last Fri. and they couldnt or should I say wouldnt help Jimmy. It seems the pediatrician was on vacation and the fill in lady Dr. didnt feel comfortable treating Jimmy............Duh! Treat the illness not the label. The problem I have and so many parents do too, is with a new Dr. or a Dr. on call, they tend to look at our kids like they are a high risk for them to treat. Ex: A child has a history of tumors so a Dr. may NOT "feel" comfortable treating our kids for say an ear ache!!! It is the worst kind of descrimination, but its real and it exists. The neurologist was trying to get this lady Dr. to please give him at least an anti-inflammatory for his back. She wouldnt so, the neurologist suggested using over the counter aleve. That didnt work, so it was off to the hosp. for a bone scan on Tues. Maybe more tumors? NO!! Thank God!Still in pain we took him to the Orthopedic. Now Jimmy was in so much pain he could hardly bear weight on his legs. The Dr., who is wonderful, did an x-ray just to rule out a fracture and everything looked ok. he thought, by Jimmy's symptoms, that it may be siatic and a pinched nerve. Possibly from the screws that are in his sacral joint. he put him on a strong pain med. and steroids by mouth for a week. If he is still in pain they'll do an MRI. I guess they can still do one, even though he has the hardwarein his back. This is a good thing. Its ALWAYS a good idea to be able to look inside and the scans are so vital. I will keep everyone posted. Right now he is resting on and off during the day. He's not 100%, maybe 25........but I do love his smiles and he has been giving us a few of those the past 2 days now. he finally ate yesterday, but had a bout of diareah.....so that was a bother for him. But, we forge forward staying positive. Talk soon. Much love, Lin~~

Saturday, July 10, 2004 7:16 PM CDT

Jimmy has been getting worse with his Dystonic spasming. It started up again 10 days ago, and has been relentless. Despite our efforts to keep him comfortable and pain free, it looks as though he is stuck in a circle. His muscles contract and contort involuntarily and he is in pain, then he is in pain so he spasms. Its a vicious circle. We are trying to keep him comfortable over the weekend with pain meds that we have in the house along with his regular med. schedule. He rests but then is screaming in pain from the muscles spasming again. Monday we are scheduled for a bone scan to see how much inflammation is present from all this spasming. Hopefully the Dr. will have him on a stronger anti-inflammatory if thats the case. As he gets older the damage to his brain from the mild C.P. may seem worse and his spasming may never get better. Combine that with the brain damage from the tumor and we are not sure where we will be a year from now, 2 yrs. from now and so on. Thankfully we have a wonderful Neurologist and pediatrician, but Unfortunately the pediatrician was away last week and the fill in lady Dr. felt uncomfortable treating him. Her insecurity has caused us to rely on the meds he's been on and just forcing us to wait till after the weekend to speak to our other Dr. for other options. Its a tough road when your child is sick, and coupled with a doctor who is suffering from insecurities just makes matters worse. I cant wait till our regular Dr. comes back. Thank you everyone for your prayers!! They are mighty and I can feel the love and care coming to us through this website. Thank you all again so much. Love, Lin~~ Jimmys mom~

Saturday, May 22, 2004 5:53 PM CDT

Jimmy's Drs. visit went well. The neurologist gave Jimmy botox shots in his left leg. 100 cc's to the calf muscle and 50 to the foot. He tolerated it ok, but has the "flu-like" symptoms you sometimes get from the shots. He is a bit under the weather and we are just taking it slow around here. He has been sleeping a LOT, which makes me enjoy the time he is awake more. I miss that little guy when he sleeps alot. Well, I will keep you all posted on how the shots worked out. sometimes it takes up to 5 days for the full benefit, we just had them done on Thrs.. Much love to all. Peace, Lin~~

Thursday, May 20, 2004 5:35 AM CDT

Hello everyone. We had our Orlando trip and it was great!! Jimmy had a ball and even rode a few rides. Then, back to reality and he seems to be having pain in his left leg. The spasming was so bad at times, he wouldnt walk. We are going to the clinic today to have him receive the first round of botox shots. Hopefully the calf muscle will respond well to this and simmer down. Also Jimmy's right eye looks smaller than the left. I have noticed this coming on for the last few days. The Neurologist will take a look at that too. Jimmy's brain MRI is due, so we will most likely be scheduling that very soon. Well, thats it for now.~~ I will update after our Drs. visit. Love, Lin~~

Sunday, April 25, 2004 8:28 AM CDT

Little Jim is sick now with what seems to be a cold and a sinus infection!:0( Just one more thing to aggravate his spasms. It seems he spasms more when he is sick with a virus/cold bug. Hopefully he will be feeling better in a few days/. Sometimes its just a good dose of antibiotics to get him on his way again. We are planning a trip to Universal Studio's in May. Hopefully for Mothers day weekend!!! Jimmy loves Barney and Sponge Bob and Jimmy Neutron, and all the Characters!! Pray all goes well and we make the trip. It will only be for 2 days but Im praying he is well enough to go and we can keep those spasms away with his meds. God's blessings to everyone. Lin~~

Thursday, April 15, 2004 8:22 AM CDT

As quickly as Jimmy has flair up, they seem to subside. We are going on a stretch of good health right now. By this I mean NO SPASMS!! I almost hate to write that down for fear of "jinxing" him. I'm praying to God daily for the spasms to stay away!! Its just so good to see Jimmy enjoying his Barney tapes again and smiling and working with his teachers Miss Nancy and Miss Linda when they come out to the house!! I will be placing new pics on his picture page as soon as I can get there. Thank you to everyone who sends happy thoughts and loving prayers to us via this wonderful web site. Love, Lin~~

Friday, April 2, 2004 1:12 PM CST

As fate would have it again........Jimmy is spasming in pain and twisting his legs every which way!! :0( All we can do is what we have been doing....that is to give him his meds and PRAY!! The last 2 times this has happened he was coming down with a cold the first time and a stomack bug the second time. I dont see any signs of any illness this time..but we shall see. I had his blood checked again, as this is protocol now when he has these "flair-ups". I guess its to rule out anything else that might be internal, which is a good plan. Most times they conclude that it isnt anything broken, or internal, and if its not a cold/flu bug, its just the brain damage from the tumor and Mild C.P. The central nervous system going crazy again.....so hard to watch. So sad for Jimmy mostly!!! Please pray that he receives relief with the meds and is back to his happy-go-lucky self again soon. Thanks so much. Love, Lin~~

Thursday, March 25, 2004 7:37 AM CST

Jimmy is doing much better. Eating again and back to his old self. Praise God!!! Here's wishing everyone a Happy Holiday Season, weather it be Easter or Passover..... May it be filled with family & love. We are thankful to God that Jimmy's health has improved and want to thank everyone for their prayers. Thank you all!! Much love and Peace.Lin~~

Saturday, March 13, 2004 7:24 AM CST

Jimmy seemed to be having a stomack upset that lasted 3 days. The Dr. said to push liquids and increase his spasm meds. The stomack upset subsided, but he is still spasming and as a result in a lot of pain. The doctors seem to be at a stand-still and wait mode. The Dystonia is a hard thing to watch, and all the doctors seem to be able to say is, this is a result of Jimmys brain damage(tumor and mild C.P). But as many of you know,watching your child in pain.....all you want to do is find a way to make them feel better!! You want/expect the professionals to fix it...when they cant you are at your wits end. I pray very hard , daily for his relief from the clutches of the Dystonia!! It is very upsetting to all of us to watch his body twist and contort. There are no surgeries to correct it and he isnt a good candidate for the baclofen pump. We have to work with the meds we do have and pray......PRAY a LOT and real hard!!! Your prayers and well wishes are appreciated. Much love to all who visit Jimmy's web page and also to those who pray~~ Love, Lin~~

Tuesday, March 9, 2004 5:36 AM CST

As fate would have it Jimmy is spasming almost all day again. The last time this happened he was sick with that nasty cold/flu bug. Right now he is showing no other signs of being sick except the spasming........Its very dis-heartening to watch him in pain. I have given him his meds and the Dr. said last time to only increse the one by so much. I have emailed and called him to see if there is another drug out there that the FDA just approved of SOMETHING!!! To just sit and wait for him to "get sick" and for their to be a "reason" why he is spaming is so horrible. In the meantime he needs an anti-spasm medicine that will help. I have no other choice so I guess I am on "sick" watch again in a way hoping he is getting a cold or something, then that would explain the flair up of the Dystonia. Pray its just the beginnings of a cold or something minor. I have the pediatrician on call so, if Jimmy IS getting a cold we can get him in right away. Unless he shows signs of being sick, there isnt much we can do. Last time we scrambled and did every test, blood work, x-rays, you name it to try to find out what was wrong and why his body was fighting so hard.....it was a cold/ flu bug and it finally became full blown, he went on meds and then recovered. We all looked stunned because you would have thought he had some rare illness the way he looked.....so sick so pale, spasming all the time. The Dr said to give him a chance when he is getting sick. To run him to every specialist in town isnt a good idea. But its so hard to sit and wait for symptoms too. Especially when he is spaming in pain so much. Please keep Jimmy in your prayers.

Wednesday, February 25, 2004 6:41 AM CST

Today is a better day!! Jimmy's spasming has finally slowed to 1 or 2 small ones a day. Praise God!!! I am always searching for new things out there in the medical community to help Jimmy, but know in my heart it is God that I really need to keep praying to. AND I do, very hard. Each and everyday!! Today is Ash Wed. so, I am hoping to get Jimmy to church to receive our ashes. Thank you to everyone for checking in on us and praying. The prayers are so welcome and appreciated. Much love to all and blessings today and always. Lin~~

Friday, February 13, 2004 6:58 AM CST

Jimmy's spasms seem to be slowing down. Mornings are the hardest for him. I have to scurry and get all his meds in him as soon as he wakes up. Its looks like his cold/flu bug thing is GONE!! Boy that sure stirred up his spasms and made us feel doomed and despaired again. When Jimmy is sick, the whole house stops. He goes from this happy boy to boom.........nothing. No "Jimmy sounds" no getting him to come out of his room....he stops eating....just spasms and looks so pale. I do have to say the zanaflex worked like a dream. We did have to up it quite a bit, but the Dr. kept reassuring me that he'd be ok. It was just a flare up. If I could just say those words to myself when he is twisting in pain all over the floor.....its just a flare-up.....its just a flare up. It was terrible and it lasted 3 weeks. Pray for Jimmy-Joe that its over. I bought him the New Lion King 1&1/2 movie. I have to say its really cute. Interesting to see another view point of the movie!!:0) N0-body does it like Disney!! Well, hopefully we'll have a little bit of fun this weekend. Valentines Day always brings candy and love and I hope Jimmy is in good shape to enjoy both!! Much Love to all and thank you for checking in on Jimmy~~ Lin~~

Tuesday, February 3, 2004 9:16 AM CST

As fate would have it Jimmys spasms have increased. He is still holding onto the tail end of a cold and Im not sure, but it could be the very thing thats stressing him out and wreaking havoc on his central nervous system. Thats all it takes is a little stress and a virus to set things off. His left leg is taking the brunt of the painful spasming. He tries to sit and the whole leg is twisting and distorting like someone is wringing it out like a wash cloth. If he tries to walk on it, it hyper-extends. Its saddening to see and painful for him. The doc upped his meds and he is sleeping more, but when he changes positions in his sleep the leg acts up again and he yells out in pain. Its horribly sad here to say the least. Please pray that Jimmys spasming stops and he can return to his happy sweet self. Thanks. Much love to all......Lin~~

Tuesday, January 27, 2004 7:10 AM CST

Jimmy was getting over the flu, it seemed and then he stopped eating again for another 5 days!! I had him back to the Drs. and the hosp. for bloodwork. His white count was off a bit and it meant infection somewhere......but where, upon examination, the doc said he didnt find anything??? All weekend we kept a quiet house. Then Monday morn. I was on my way to taking Amy to school & Jimmy got a terrible nose bleed. I got him home and he seemed BETTER!! He was smiling and making his famous "Jimmy" sounds. The Dr. said it was most likely a smoldering sinus infection. Poor little guy must've been in so much pain and he couldnt tell us!!:0( He's on another antibiotic, this time for 10 days. Hopefully he'll be on the mend. Thanks for stopping by and checking in on little Jim!! Lin~~

Monday, January 19, 2004 6:36 PM CST

Jimmy came down with the flu.(Upper respiratory & also an ear infection). It wore him down and he had a few days where he wasnt out of his room or off his swing chair. The house was so quiet. Mike and Amy and their friends commented on how Jimmy wasnt making any of his "Jimmy-sounds". Thankfully he is journeying out of his room a little each day, and is getting stronger. His spasms were a lot worse due to being worn down from the flu. He looked so skinny & pale. I hope this is all behind us now. I will have fun fattening him up. :0) Much love to all. Lin~~~

Saturday, January 3, 2004 5:50 PM CST

Christmas and Jimmy's birthday were beautiful. He was an angel, as always. With his 12th birthday came the thanks and hope for another good year! Our prayers are with each of you as you come and read about Jimmy & leave messages for him. May you leave with the knowledge that God is good and he is great, ever present in all of our lives. Our miracle is the child you see on this page. His light shines for us and may it shine for you too. God bless us all as we open the door and enter into the year 2004!!!

Tuesday, December 9, 2003 6:46 AM CST

The chill is in the air!! Christmas is upon us. I just wanted to take a minute and say Happy Holidays to everyone! Jimmy is VERY excited this year with the Christmas decorations and all the hoopla!! His birthday falls on the day after Christmas, so it continues right into the next day!! lol. Celebrate and be joyous. Jesus is the reason for the season, and he does exist! Blessings to all and may the angels watch over you and show you signs from Heaven that they are ever present in our lives during the Holidays and everyday!! Love **~~Lin~~**

Friday, November 28, 2003 4:18 PM CST

Hi Everyone, as I reflect back on yesterday, Thanksgiving, I see how much I am Thankful for again today and everyday!! My children Mike, Amy & Jimmy. That they are happy and here with me. I also reflect on what tomorrow is. My 1st child Lori's birthday is tomorrow. Nov. 29th! She was born in 1978 and passed away in 1981 of a brain tumor. Such a short time to be on this earth! people ask if the pain gets easier to bear.... I really have to say No. It gets "different". You begin to get real good at hiding the pain, or should I say you get more in control over the years. I still cry, but its something you do when your alone. Sometimes you still cant help the grief that sneaks up on you, its always there too in a sense. I've gotten to where I dont care if people see me cry. Most times they dont know why Im crying, so I can really tell them anything. But, Those "Hallmark moments" still catch me off guard. The thought of her the way she was..... The last days. The tears are still there so new yet in a sense. Time can never make them go away. But, life does go on and I am so thankful for everything in my life. My family, my church, my cyber-friends, those with whom I may just have a brief encounter with and then they are gone. So many nice people. Tomorrow we'll send up a bunch of balloons!! We'll talk about Lori and feel the love that is all around us because of HER!! ~~OH What wonderous stars the skies shall see tonight, but...for us, none shine as brightly as the one that burns in your memory.........Lori~~ Love, Mommy

Sunday, November 16, 2003 7:22 AM CST

~ We hope everyone is well and looking forward to Thanksgiving. ~~As always, I have to take the time to thank everyone who visits Jimmy's web site. Thank you!! He is doing fairly well. Still having a few spasms a day, but we are trying to keep him and the environment calm. As long as we plan out our days, sometimes taking one hour at a time in planning things, we can do it. Before taking him out we assess how he's doing. If it looks like a morning where he is experiencing a lot of muscle strtching, we plan our outings later in the afternoon. :0) Its hard sometimes but whatever's best for little Jim!!:0) Thankfully we're celebrating Thanksgiving here at our house. He can rest in his swing chair while mom here cooks the turkey!! Other than that note all is well. THANKFULLY!! Much love to all. Lin~~

Sunday, November 2, 2003 6:35 AM CST

Well as fate would have it....Jimmy did NOT get to go out trick-or-treating. I felt so, so bad for him. His legs started spasming so bad I had to medicate him for that. Then he was pretty tired after that and just sat on the couch watching Charlie Browns Halloween. Mike and Amy brought him some treats and he was real happy about that!! Today is my b-day...age unknown...lol. We're staying home for a quiet day and right now Jimmy is watching his Snowden tape. How he loves that big snowman!! I think my wish on my birthday cake this year will include something about Jimmy & NOT having spasms. Never underestimate the power of a birthday wish!!:0) Well, thats it for now. Will update again soon. Thanks so much for coming by. Lin&Jimmy~~

Thursday, October 30, 2003 5:06 PM CST

Hello everyone!!! Its Halloween Eve and its great anticipation for the Great Pumpkin around here!!! lol. Jimmy is very excited about trick-or-treating tomorrow. Everytime I mention it, he smiles and closes his eyes!! Ahhh, dreaming about all those candy bars I imagine!!! Jimmy had his 3 mth. neuro. check up last week. He did ok. The Dr. upped one of his meds and said to let him know if this provides more relief from his spasms. I'm praying it does. Thankfully the meds he upped do not make Jimmy tired. So thats a plus!! Other than that, things are stable. Cant ask for a better report. :0) Thank God!!!! I'll update after Halloween!!!! Love, Lin~~

Friday, October 10, 2003 9:15 AM CDT

Hi!! Jimmy is NOT limping anymore. He seems to have just had a very bad Dystonic spasm which resulted in his pulling and over-extending the muscle in his leg and foot. We will be seeing the neurologist this month for the Dystonia and other neuro. problems. Other than that little bump in the road, we are doing well. Thank God! Jimmy is getting ready for Halloween. We visited the big Party Store last week and he had fun while his brother and sister ran around trying on all the scarey masks. lol. We are having our annual Halloween Party on the 24th of this month. It should be fun. I will post pictures after that event!:0) Till then, thank you everyone for visiting Jimmy's site and leaving cool messages for me to read to him. ~~~Happy Halloween~~~ Lin

Tuesday, September 23, 2003 8:43 AM CDT

I spoke to the Orthopedic Dr. from Miami today. He looked at the x-rays and said it didnt look like anything damaged the screws. They were intact and basically looked fine. Because Jimmy has only been limping for 2 weeks and it doesnt seem to be "painful" at this point, he wants us to wait another 2 weeks and if he's still limping we can bring him to Miami for re-evaluation. Of course he left it open that IF Jimmy's limping gets worse or seems painful to call a.s.a.p. This could be strained muscles from his intense spasming too. I guess thats why the Dr. wants to wait and see. With Jimmys health issues being numerous, you just have to check every avenue. But you want to tred carefully too. Give him a chance to let us know through his body language how he is feeling. Because he doesnt speak at all its hard to know. He does communicate with pictures but when asking him to show you pain, or "express" it through pictures its really hard. I guess we will do what the Dr. suggests and wait. Please continue to pray that the limping doesnt get worse, or that it is just muscle strain and he wont need corrective surgery on anything down the road. Much love & peace~~ Lin

Saturday, September 20, 2003 4:48 PM CDT

Well, we finally had Jimmy's x-rays done last Wed. The radiologist looked at them and noticed a problem around where Jimmy had the sacral joint tumor removed. In his sacral joint he has hardware that consists of 2 large screws, the size of a bic pen each. Thats the only way to describe them. :0( The area around the screws looks like scoliosis of the lumbar, right where the screws are!!!!!! This is probably most likely what is causing the limping. I know myself that Jimmy has had a growth spurt over the last year. He grew about a foot from last year, no lie!! The hardware was suppose to be alright and actually take him through adulthood with no problems. BUT.....I guess we just never know. I am waiting for the orthopedic Dr. to examine the x-rays which are on their way down to Miami. I use to notice when Jimmy was younger he sometimes walked with a little "twist". I remember saying it was a small price to pay for him being here and being a miracle!!! I still feel that way, but I am sad because the "twist" is now a noticable limp/indicating a problem. Before when we'd have him x-rayed the screws and the area were perfect but now it shows something. Please pray that its fixable by a brace or surgery, even though I am NOT wanting him to have any surgery anytime soon!!! But I just hope things do NOT worsen for him. He continues to have that awesome smile that melts your heart!! He is VERY looking forward to Halloween!!! I took him to Party City today in his wheel chair. He grabbed the first bag of candy he could get his hands on!! Smart Kid!!! Thats my boy!!! Thank you everyone for visiting Jimmy's web site and keeping up with his health issues! I'll update around Tues. Love, Lin~~

Thursday, September 11, 2003 12:12 AM CDT

For the last few days when Jimmy wakes up in the mornings he cant walk well. He is limping and it takes about 2-3 hrs. to get full range of motion again. I have a call into his orthopedic Dr. because Im pretty sure it isnt neurological. Jimmy has those 2 huge screws in his sacral joint from his back surgery to remove the tumor he had in there. He has been doing pretty well with this and we just recently stopped having yearly x-rays to check. The tumor was classified benign because of its size. As these types of tumors grow inside the bone (Jimmys was a osteoid osteoma) sometimes they change and could form cancer cells. BUT this was NOT his case 3 yrs. ago. So, he had surgery to remove the tumor, No chemo, No radiation, just reconstruction surgery to the sacral joint. WHY he is limping is unknown but it appears to be after sleeping all night. I hope its just stiffness and not anything worse. At any rate, I will keep everyone updated. Please pray for Jimmy-Joe that everything is ok. Much love and thank you for checking in on Jimmy periodically. Lin~~~

Thursday, September 4, 2003 5:09 AM CDT

Jimmy has been sick with a cold/flu bug for a week now. When this happens his Dystonia flares up and his muscles hurt even more. He is on antibiotics and taking it easy this week. I caught the bug too, so Jimmy & I are taking it easy this week together. We had to cancel his hosp. homebound teachers this week, but hopefully he'll be better soon and Miss Nancy & Miss Linda will be able to come out next week. Well, thats all for now. ~~Lin

Wednesday, August 6, 2003 5:52 AM CDT

We decided to try Disney World for a few days and all went well!! Jimmy's Dr. told us to up Jimmy's meds enough to keep him from spasming. Normally the raise in meds would knock him out, but the plan was that all the visual stimulation would keep him awake! It WORKED!! We wheeled him all around Disney World and he was happy! He did have a few minor spasms but they were over in 5 min. Too bad we couldnt up his meds at home, but the theory is he would be sleeping all the time, which we do not want. At Disney there was so much to see and hear and of course the weather, either it was hot, hot, hot, or raining. He liked mom carrying the umbrella over the wheel chair while it poured rain and his bare toes getting wet!! lol. BUT, the trip away and the smiles on his face were worth all the effort. We only live 3 hrs. from Disney but havent been in 5 yrs!! It was good for all of us to get away. Mike and Amy of course enjoyed themselves immensely. We even managed to get Jimmy on a few rides. It was a Heaven Sent vacation. Much love, Lin & Family~~

Thursday, July 24, 2003 11:37 AM CDT

A Lot has been happening since we went to the movies to see Nemo. Jimmy is on a higher dose of meds. partly to get more relief from the Dystonia, partly due to his growth spurt too. The meds must be regulated as he grows. His next Drs. visit is in Sept. We are trying to get through the "dog days" of summer. His teachers continue to come out to the house to teach him. He is enjoying his time with Miss Bonnie and Phyllis and Stephanie!! I will update more often, the time escapes me sometimes. I am still sewing and making those hooded towels for the Macs kids. They are all so special & deserving of so much more!!! :0) Much love~~Lin

Monday, June 23, 2003 6:54 PM CDT

We finally got Jimmy out to see Finding Nemo yesterday (Sunday)!! He absolutely LOVED it!!! He was a little jumpy and would startle easy when the music would crescendo!! But he held it together without any spamsing. He is now a #1 fan of Nemo and Dori and all the characters!! We really had a nice afternoon. We havent been to a movie with him in about 3 yrs. The patch he was wearing for the Dystonic spasming didnt work out. Sadly they wouldnt stay on and then he found one and chewed it up. We have now changed to the oral Clonidine. That mixed with his other meds is only making a slight difference. We see the Dr. in Aug. Thank you to everyone for reading Jimmy's updates and for leaving such nice messages in his guestbook for me to read to him!! They are very appreciated! Also~ If you get to see one good movie this summer make it to see Finding Nemo!! It really was entertaining. Even adults will get a charge out of it. As they say, nobody does it quite like Disney!! :0) ~~ Love, Lin

Thursday, June 12, 2003 5:48 AM CDT

We had our big neurologist visit yesterday. The Dr. said to NOT fit him for foot braces at this time. He wants to try another med, which we are, its called the catapress patch. The idea is to strive for 100 per cent control of these horrible spasms, and then not even needing any braces for his feet! This would be a dream, so.....we are now taking away one med and adding another. The scans looked good, but as Jimmy grows the area's of damage to the brain (from the brain tumor & the mild C.P) are more pronounced. Jimmy's dad and I cringed when we saw the area's of the brain affected on the MRI scan. When we turned around Jimmy had pushed himself around the corner of the wall in his wheel chair & came out into the hallway as if to say..."Its ok". :0) We all smiled and said "Jimmy you want to see your scans too!". He has such a way of making us smile and seeing him for what he truly is... a MIRACLE!! Thanks for visiting again & dont forget to leave Jimmy a message on the guestbook pages to let him know you came by. God's blessings to everyone~~Lin

Friday, June 6, 2003 7:28 AM CDT

His spasms have been minimal the last few days. Still about 1-2 a day. The distorting and twisting that his whole body goes through is the hardest thing for him and us to watch. We see the neurologist on Wed. Maybe his meds can be changed around. Ive been trying to get Jimmy familiar with the new movie FINDING NEMO!! I went to McDonalds and bought every single figure from the movie that they give away in the Happy Meal!! The lady at the drive through was laughing so hard because I was like "Oh they have the blow fish". hahaha!! I got home and lined them up for little Jim and they are adorable. He looked at each one. Some light up, some make sounds. I talked to him about the movie and told him in a few days we'd go see it. Please Pray for a spasm free day for him. :0) I really would love to see him enjoy a movie in its entirety without being plagued by those attacks. Thank you everyone for visiting Jimmy's web page. check back for more updates. Much love to you all~~

Saturday, May 31, 2003 5:22 PM CDT

Yummy!! Strawberry's are fun to eat!!Jimmy pictured above enjoying a few! Well...Today we went to my sister's bead store. Jimmy was pretty mellow there. No major spasming. I did have to give him his meds right before we left so, he wouldnt be spasming if he encountered loud or startle sounds that have been known to drive him into a spasm. He is down to 1-2 spams a day. These are often brought on by normal everyday stresses. Could be an airplane going over or just that he had fun that day and his nervous system couldnt take it. I am in the process of taking video footage of him when he has the spasms, for the neurologist. Jimmy may need foot braces made so his feet dont spasm in too much when he has these attacks. When we go out his travel/wheel chair, that has a tilt and fold option, is great for his back and easy on mine, when its time to put it into the car!! School will be out for Mike, Amy, & Jimmy on Tues. I'll try to update as we go about our hot summer days. Till then take care and God's Blessings to everyone!!~~

Friday, May 30, 2003 8:38 AM CDT

Jimmy is a medically complex child. He has endured much in his 11 yrs. He had a brain tumor at age 2 and 1/2 yrs. old. It was removed but he is non-verbal and has dev. delays. He has Dystonia, which is a muscle disease. The Dystonia is the hardest down fall for him right now. He also has mild C.P. and He also had a tumor removed from his sacral joint when he was 8 years old. He is a happy child and loves life. He has a brother and a sister, mom & dad, lots of critters and he has many friends! Jimmy is going though life with a LOT of LOVE around him. I will try to update his health periodically and add new pictures. Thanks for stopping by. Lin~~Jimmy's mom!

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