Bloggin with Lin

Hi everyone! this blog was created before I contracted Lyme disease. I was going to remove all the old posts but they are a reminder of happy times. Happy times that I want to happen again! And with a little luck and a whole lotta prayer can be in my future again someday. I hope!! come and see how Lyme has changed my world...but not dampened my spirit. my first new post will bring you up to speed on whats been happening. feel free to visit the older posts and see what life was like before. and trust me this blog doesnt do it justice. so much love in one family and their still is only one of the members is not tap dancing right now. that would be me! but we still despite the illness i have we live love and laugh. xoxo

pics from the party. see post below....

summers almost over.......

I like to think we are like everyone esle and going into fall weather, but Florida is on hold. We are still in Hurricane season, so our fall actually starts After Nov. 1st. Thats officially the last day of Hurricane season. So, here we are in 100 degree weather yet. ouch. lol. The kids are back in school, which means Jimmy's teachers start coming back out. He adores them. :0) Mike is working fulltime and Amy starts college classes today, actually! Wow, huh? Where does the time go??? Amazing. Some other news...Over the summer we had a scare when my sisters boy Ravi was diagnosed with a brain tumor, in the same spot as Jimmy and Lori's was. He had it removed and is doing well. it was a rare benign tumor and they got it all. He will join the elete group of members of the club where you must be scanned once a year.........a club no-one really wants to join. But, we stay optimistic and pray for our kids daily....Then Hubby's nephew Tom died in an accident. He worked in construction and was killed when a beam hit him in the head..he was actually raced to the hosp. where they had him in a drug induced coma for 3 weeks and then he passed away suddenly. It was very sad. Jim and Mike flew to Michigan for the funeral. (For those who know our family...know this was Jim's sister Teri's boy). He left behind a wife and 3 kids. His funeral was amazing because he also happened to be a volunteer fireman and I dont have to tell you what their ceremonies look like. Simply moving. So, in a nutshell that was our summer. To End on a happier note. We had my sisters twins b-day party here yesterday. It was fun. Jimmy enjoyed everyone being here and was giving hugs and wanting everyone to kiss him. He'll get up close to your face with his and just wait there for you to kiss his cheek. too cute. Well, so long for now. Talk on ya all soon. Love, Lin N Crew~*

Jimmy having fun

Good Health Thank God~~**

Hi Everyone!!! Its been a little while since I posted. Jimmy's health has been on an all time HIGH! Im praying he stays well for a long time. His new med. he is on, its a mood stabilizer, has been working wonders. That and having his cavities fixed is really making him a happy camper. We'll be heading into summer soon............Last year was aweful with that stubborn ear infection that he winded up needing to have IV antibiotics for and also surgery, so we are hoping for a Healthy Jimmy this summer. Maybe we will get to enjoy some fun activities. Here's a few pics to keep you all entertained. And as always thank you soooooo much for checking in on us. Love, Lin N Crew~*

Hello everyone!! Happy Easter season. May God's gifts surround you. :0) We are settling into a semi-slower pace. Soon summer will be here and for us Floridians it means Hurricane season, which we ALL dred but prayer helps a great deal. So, we are praying for a season of NO HURRICANES! Last year was pretty good to us, so hopefully we will have a repeat of that. Otherwise things are moving along. Amy graduates this year so, we will be prom dress shopping. Yippeee Fun Fun!! lol. I am so happy she will be out of school finally! Then off to a local college and onto new endeavor's. Mike is doing well. He is in Automotive school and also working. (I love that all my cherubs are still living home.) Jimmy is staying well. He hated the rain we had last week. The house gets damp and I think the harware he has in his back hurts when its damp. A trip to Mickey D's usually cheers him up, so I think we'll do that today. Well, not much else happening so I will sign off for now. Much love to all and thanks for always visiting Jimmy's page. Talk soon. Lin N Crew~*

Hi A Family Birthday party!!

Hi Everyone. We (Mike, Amy and dad) got out to a family birthday party. It was for my great neice who turned 6. Jimmy stayed back with the respite Worker, Eva...who he just adores! He wasnt feeling to well, just seemed very tired yesterday and we decided it was better to have him here at home with Eva and his beloved Barney tapes. I (me...mom) dressed as a bunny and had all the kids searching for Eggs and candy all afternoon. There were about 6 young ones under the age of 7 there, so I thought it would be fun to dress up and fun it was. So, enjoy these pictures. lol. We sure know how to throw a party, huh?

The Greek Festival

I will try to download some different pics. (These are the same ones on Jimmy's web site, sorry. :0) I do have more from the festival, just need to get movin' on them.) Love ya, Lin~*

Greek Festival pics. :0)

The Greek festival.

Hello everyone. We were able to head off to the Greek festval last saturday. Jimmy was one happy kid. He ate practically at every stand, and enjoyed the sights and sounds of all that was there! What a God given day. (It really made up for the worries we had over him over the Holidays. Not know why the crying and tantruming. Thats all in the past and he is on 2 new meds, also had his teeth filled and cleaned, so onto 2008. Which I know rhymes with Great!! lol. ). May it be Great for you all and hold only beautiful and wonderful things. We ALL need a break! Love, Lin N Crew~* Enjoy these pics.

Teeth filled and tatto's. :0)

Hi Everyone in Blogsville...Jimmy had his teeth filled under gen. anesthesia last week. he did real well. he seemed sedated when we kissed him good-bye but once inside the operating room, he had other idea's. he jumped off the table and began running around the room, touching stuff. It took 8 people to get him back on the table. I warned them that he was a runner.......who listens. lol. I have a few cute pics of him after the ordeal, as we slipped thru Wendy's for a ch. frosty. :0) Then afterwards (on another day) I got my tatoo! Its the heart of the ocean from the movie the Titanic. On my foot. :0) The movie makes me remember that no matter how tough things get they can always be worse. I love that movie it gives me the drive to go on, stay on the ship as long as possible.....pray, hope. SO, you shall see a pic of my foot. lol. Yesterday my oldest child Mike celebrated his 21st birthday! Big Milestone. :0) He is a good kid. Going to school and working. he is going to Automotive school at nite and working during the day........perfect. :0) Well, must run for now. Jimmy decided to stay up all nite. He's been burping a LOT and the Drs. seem to think its reflux. He has to see a G.I. Dr. now. It douth never end........Love, Lin N Crew~*

Jimmy's neuro. visit and Movie Facing the Giants~~**

Hello everyone. Jimmy's visit went well. The MRI of his brain is stable. The area we were concerned about where there is fluid, from where the tumor was. Its Ok!! Yes! Its draining and all looks good. Here's a pic of Jimmy at the Hosp. yesterday where we see Dr. G. He didnt look too happy but after we left he was actually smiling when we got home. He is on seraquel for a mood stabilizer and seem's happier after only 2 weeks on that. I think we'll keep him on it. His moods were getting too unpredictable. Sometimes he'd just cry and we didnt know why. He'd seem sad, or then get wild laughing. So this may help. Because he is non-verbal we had to do tests and rule out any illnesses or other problems. So after we found him to have really nothing serious wrong, we opted to get him on something for his moods. He smiled today and actually sat and watched the movie Facing the Giants, with me...Which I thought was awesome. Everyone should try to see it. Its out on DVD. Well, Must run for now. Love you all faithful readers of Jimmy's web site and my blog. Gotta love the internet. Thank you again Bill. lol. Love, Lin N Fam.~*

Happy Thanksgiving

Well, here we are Thanks giving. We are Thankful Jimmy's MRI of the brain was the same. Stable. No tumor growth. We took a sigh for a little while until, they told us that his brain damage from the tumor may be whats causing the problem with his moods. He has been skittish and aggitated. The problem most likely is in the tumor bed. The cisterna magna. Inside the cerrebellum. This area is prominent, which means its larger. Spinal fluid drains thru it ok but there is just a space............In kids with Joubertte's syndrome and Dandy Walker syndrome, where they are born with mal-formations in this area, behavioral changes are evident too. (The same things Jimmy experiences. How the kids get to this point is different but the result is the same). So, its pretty much brain damage and we knew that he had some. But, the realization that it is affecting him more as he gets older is sad. He will need a mood stabilizer. Some type of drug to keep him on an even keel. There are so many but as one nurse put it, we tred into uncharted territory now. He may have to do trial and error before we find the right drug or combination of drugs. So onto life now. He is on ativan for now to kind of keep him nicey nice. But its a temp. thing. He is most aggitated when he cant communicate to us what he wants or needs, or he's scared, or he is ill, or in pain. So, we have to watch him closely to help understand him. He is still so sweet and I love watching his eyes wide open and mouth open when he watches tv with us in the evening. His fav. blanket draped over the top o his head guarding his ears. We love when he gets sleepy and his eyes droopy and he drifts into sleep. He is so peaceful. His little mind resting. His ear (the one he had problems with over the summer) is acting up again. Looks like its infected again, so we started him on the ear wash and drops. This could be bothering him too, so we jumped on it, as soon as we saw it was ozzing again, we called the Dr. So, all in all thats about it. I'll be cooking here, so must go and organize my things for the big cook off. :0) May everyone have a blessed and safe and Happy day. Love, Lin N Fam

Speedbump.......

I called this update speedbump, because Its like we sped to another diagnosis with Jimmy's latest illness......The culture showed yeast in his urine(?) this is strange, but they put him on an antifungal med. now for 10 days. How yeast got in his urine is unknown....In the meantime he goes in tomorrow for an MRI of his brain to make sure all is well there. He has been cranky and it may all be just his patience has run out with being poked at and prodded by Drs. and nurses. I hope this all clears up and he can get a break soon. He is normally a sweet child. But, when he is sick its different, real different . Because he cannot communicate, he gets angry and we dont want that......so we may be seeing a phychiatrist for him to share some idea's on how to deal with his behaviors when he is sick. Hopefully he'll stay healthy but in this world of germs and diseases sometimes thats not as simple as it seems. So, he may have to be on something like a mood stabuilizer or something.... Jokingly I said to the pediatrician today, there are about 10 people I can think of in our family that need them right now. lol. But we really need to help Jimmy big time. He is getting so big. He'll be 16 the day after Chriostmas but in his mind he is 4. Well, on to tomorrow and the MRI. I'll post after. Love, Lin N Fam.~*

Moving forward slowly.....

Hi everyone! Its been touch and go here. Jimmy is on his second day of antibiotics. He still seems edgy and cranky. Probably due to the UTI. Were waiting for the full report to come in on the urine culture. Then he has his MRI of the brain this week. I hope he is able to get it before the Thanksgiving weekend. The pediatrician called yesterday and said he'd press for it. Jimmy has been looking a little "off" Like something neurological could be wrong. So we're taking a peek thru the wonder of the MRI scan. Right now, as for today, we're just going along our merry way concentrating on the positive. Focusing on Turkey Day. Family, friends and all that we are Thankful for........Love, Lin N Family~*

A visit to The E.R.

Jimmy was in a lot of pain last nite so we took him to the hosp. he had a CT scan of his abdomen and everything was ok, Thank GOD! But they catheterized him for a urine sample and it showed bacteria. He needed so much sedative to get him to co-operate. Poor little guy is still sleeping this morning. He's on antibiotics. They actually started him on Rocepherine last nite. We got home at 2 A.M. We're all beat. Have to pick up his perscription for his antibiotics and then hopefully catch some sleep....I'll update soon. Love, Lin N Fam.~*

who will stop the rain........

When it rains it poors, it seems. Jimmy and I had that bad, bad stomack bug for 2 weeks. Then after it left the building, you are left with a terrible inflammation of the lining of your stomack. How nice, huh? Im walking around holding my side like Napoleon, and Jimmy...poor little guy, just doesnt know what to make of the whole ordeal. Of course he is looking so skinny, so we are pumping him up with Boost drinks. The meal supplements. Thankfully he likes the chocolate flavored ones. But, gosh....he just looks so frail.His Dystonia is buggin him big time (Muscle spasms) He doesnt want to do anything. He ate a little bit better yesterday, so I think that will mean no more hosp. visits. He was hospitalized for this stomack bug for one whole day and had to have fluids, IV. So.....having said that.......we go on. Taking each day as it comes. Hoping he gets over this thing and we can head into the Holidays happy and healthy.I'll be doing the Thanksgiving meal here for the family. My folks will come and also my sister and her family and who-ever else happens by. The secret to all this is .....remember to cook early and make a LOT!! :0) Much love to all and thank you for always stopping by to see us thru the wonder of the Blog. lol. Love, Lin N Family~*

The party was a HIT! Everyone had a GREAT time. Here's me, Big Momma, dressed up as a Ghoulish Maid. lol. I made a few receipe's from the Oct. issue of Woman's Day mag. They came awesome. I also made baked ziti and sausage and peppers the day before. We made cupcakes too. My daughter Amy helped decorate them. She's an artist. lol. REALLY! Well enough for now. I hope Everyone has an awesome Halloween. We are expecting a tropical storm down South here, but whats Halloween without a little wind and rain, right??? Much love to all. Lin N Crew~*