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DANIEL MARRERO

Journal entries are at the bottom of the page.

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Welcome to Daniel's Web Page.About 5 years ago after a head injury Daniel started having grand mal seizures.He had those about once to twice a week for 6 months and then they changed to complex partials.Since then life has been full of ups and downs and a lot of battles trying to control his seizures,he now has many different types.He has been on 6 different anti epileptic medications and a special diet and still continues to have seizures.On February 1st Daniel had a VNS implanted to hopefully help control his seizures.You see after having so many seizures the brain starts getting overloaded and you start seeing all sorts of cognitive and neurological problems,like slurred speech and memory loss and school which was once so easy is now very difficult.Daniel is homeschooled,so it gives us a chance to catch up between doctors appointments.As of May Daniel's VNS implant was turned off because it was making him worse,now he is on the last med and it does seem to be helping.If this fails the only other option is brain surgery.Update as of April 08'Daniel had surgery and had his VNS implant removed .He's doing great on 600mg of Topamax and has not had a Grand Mal in almost 2 years.Now he's having blood pressure issues.Please keep Daniel in your prayers and sign Daniel's guestbook and drop us a line.

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ANY HAPPY MAIL FOR DANIEL CAN BE SENT TO P.O. BOX 551 BURLEY,WA.98322.

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CLICK ON THE CB FAMILY AND FRIENDS BUTTON TO VOTE FOR DANIEL'S SITE AND VISIT OTHER CB FRIENDS.

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DANIEL AT THE USSA FISHING EVENT.


CHECK OUT DANIEL'S NEW MACS PHOTO ALBUM AT

MACS PHOTO ALBUM

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TAKE A LOOK AT THE ARTICLE ABOUT OUR FISHING TRIP.

THE FISHING STORY

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HERE ARE SOME OF THE WONDERFUL ORGANIZATIONS DANIEL'S BEEN FEATURED ON.

MAKE A CHILD SMILE

CHILDREN OF PROMISE

LOVE QUILTS

THE TUMBLEWEED FOUNDATION

HUGS&HOPE

BRIDGE OF DREAMS

SHARE THE LOVE

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FUN SITES

DISNEY 2 GO

DISNEYLAND

GARFIELD.COM

SNOOPY.COM

LEGO.COM

THE DISNEY STORE

DISNEYWORLD

I-LOVE-DISNEY


OTHER HELPFUL SITES.

MONSTER LINKS

KIDS SITES

STARLIGHT FNDTN WA.

GREAT ESCAPES

GREAT ESCAPES 2

STARLIGHT FNDN

STARLIGHT OREGON

ALL ABOUT EPILEPSY(tons of links)

CARINGCREW

KEIKI CARDS

THE EPILEPSY FOUNDATION

THE MAKE A WISH FOUNDATION

WASHINGTONS MAKE A WISH

GIVE KIDS THE WORLD

SUNSHINE ON EAGLES WINGS

SMILE N HUGS

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GREAT GRAPHICS

CUTE COLORS

GRAPHIC GARDEN

DISNEY 2 GO

ANNES GIFS

TEX LASS

APPLE BLOSSOM ART

TENDER HART

DISNEY CLIPS

DOLLIE CRAVE

TEDDY GRAPHICS

SNO.GIRL

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SCHOOL LINKS

OUR SCHOOL PAGE

JODY'S HOMEMADE LIVING

CHARLOTTE MASON SCHOOLING

PUGET SOUND PARENT

KITSAP KIDS

BELFAIR HS

FAMILY FUN

EXPERIENCE WASHINGTON

HOMESCHOOL LINKS

1000 GOOD BOOKS

WE ARE DOING A POSTCARD DRIVE FOR DANIEL.I SAW KATIA WAS DOING THAT AND THOUGHT IT WAS A GREAT IDEA.DANIEL LOVES TO SEE DIFFERENT PLACES AND WHAT A GREAT WAY TO SHOW HIM THE STATES.IF ANY OF YOU COULD SEND HIM A POSTCARD FROM THE STATE YOU LIVE IN IT WOULD BE MUCH APPRECIATED.

WOOHOO!Today Daniel's up to 700 postcards!,it's a great start.Please keep them coming it brings him a lot of joy.

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THERE ARE MANY GREAT BOOKS OUT THERE FOR INFORMATION ON EPILEPSY & TREATMENT HERE ARE A FEW

SEIZURES AND EPILEPSY IN CHILDHOOD,By John M. Freeman,M.D.

PARTIAL SEIZURE DISORDERS,By Mitzi Waltz

EPILEPSY AND SEIZURES,By Dr.Donald Weaver

THE KETOGENIC DIET by Dr.John Freeman.

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DANIEL LOVES

GOOFY & GARFIELD

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GOING FISHING

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COOKING WITH EMERIL

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DISNEYWORLD and all things DISNEY.

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*HUGS* TOTAL!
give danielmarrero more *HUGS*

Get hugs of your own














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Daniel with Meeko & Pocahontas

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The beautiful snowglobes on my site are at Volsgal.com

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Proud parent of Bret currently serving as a Military Policeman in Honolulu Hawaii.

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IN MEMORY OF SWEET ANGEL JACOB

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"SO LONG MATE YOU'LL BE MISSED"

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PLEASE SIGN DANIEL'S GUESTBOOK IT SURE CHEERS HIM.

Helens Banners

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If you're having trouble getting the guestbook to load after you click on it hit stop and it will open right up.

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Our true stars!

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Daniel getting Goofy hugs.

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Daniel caught in the net at California Adventure.

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Daniel enjoying his balloons from Hugs 7 Hope.

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I was asked to write some of the things the kids have interests in,so here goes.

Daniel,likes cooking items,cookbooks and anything to do with cooking.He loves to watch Alton Brown on The Food Network.He also likes fishing,bowling and things about WW2.He likes Garfield and Goofy.

Michael really likes artsy type things.He's always making little cards and comics and likes all sorts of art supplies.He likes Calvin and Hobbes and Mario things.

Ariel loves all things animal. She loves animals of all kinds and that is her passion.Besides that she really likes High School Musical and ds games.

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MANY BLESSINGS AND THANK YOU TO:

The Williams family for the boys wonderful birthday boxes.

To:Ms.Lu,Thanks for all the sweet and wonderful cards you always make us.

THANK YOU SO MUCH YOU'RE A BLESSING TO OUR LIVES.

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Midi Playing Is
Grand Disney Theme

courtesy of
Belle' Midi Library3


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Daniel and Michael having fun with the miner's band.

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The spinning tea cups.

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Daniel,Michael and Ariel having fun on The Jungle Cruise.

Ariel's site

Ariel's quilt of love

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Journal

Sunday September 28,2008 1:21pm PST

Hello friends,Well we are busy as bees getting ready for our Disney trip.We leave Friday and we are so excited.Now it's just all the prep that's involved.I need to get the boys haircuts,pick up meds,pack suitcases and gather our mountain of essentials,not to mention picking up the rental car.This week has been busy caring for the injured patient.We had an appointment on Monday with Daniel's doctor.I get there and sign in and they said they couldn't find him on the list.Then told me that he was on the list for some P.A.,I said oh no you don't.I'm not going to pay a co pay,plus a 10 percent doctor fee for some P.A. I don't know.After having an argument with the receptionist they put us back on with his doctor.Anyway we met with the doctor and he took more x-rays.We also met with an Ortho who said he will have to wear the boot for 6 weeks.As he has a very obvious break in the ankle.We managed to get him a wheelchair for the trip and that will help,since the parks are so large.

Tomorrow,we go to the doctors for Michael's sleepiness and hopefully figure out what's going on with him as to why he's so run down and sleepy all the time.Daniel's pain is much less than it was,although it's still pretty swollen.He gets really pooped out so quick on the crutches with the 10 lb. boot,so the doctor thought the wheelchair was a good idea. Ariel's feeling pretty good lately and we will finish up this week of school and then off we go.This is our yearly let the kids be kids retreat,since so much of their lives are taken up with medical woes.We have a cabin in the mountains on the 1st day and then off to grandpa's the 2nd day and then we are going to Knott's,Disney and The San Diego Zoo.We are also doing a couple of character meals.The one good thing is that we will get to go to the front of the lines with Daniel's ankle injury,although swimming will be definately out.Please pray for our safety during our drive down there.God bless,Linn


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Hello friends,Sorry I've been away so long.I have been diligently trying to get school going with the kiddo's and so far we have not been able to stay out of trouble health wise to keep things going.Michael had to go in hospital for 2 days for a VEEG.We were trying to capture one of his dizzy spells,but no such luck.He had one the day before and 2 days later.He has been tired lately and not feeling good and so he sees the doctor next week.

Ariel's been having tummy issues again and so we are working on that,such is the case with IBS.

We went to a friends house last Saturday for a barbecue and Daniel sprained his ankle.We went to the doctor and it was not broken,but the doctor wouldn't splint it,brace it or even give him crutches.I was concerned he would sprain it worse.Yesterday while playing outside with friends Michael came into the house and told me Daniel's leg was broken.I went outside and sure enough his ankle looked deformed.I called the paramedics rather than messing with Urgent care and they got him in right away and gave him pain meds.After x-rays we found out his ankle is severely sprained and he has a fracture of the fibula.He is in a very large boot and crutches.He is supposed to keep off of it for 2 weeks and then more crutches.We are going to Disney in 2 weeks and so that should be fun.Please pray for Daniel he's in a lot of pain and is already tired of being on the couch.God bless,Linn

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09/02:Hello friends,Well it's September 2nd and even though it isn't officially Fall, in Western Wa once Sept 1 rolls around the weather takes a dramatic turn.The days are cooler and the nights are downright cold.Fall is my most favorite time of year.I love starting school,picking apples,going to pumpkin farms,grandma and grandpa coming for 2 weeks for Thanksgiving,getting ready for Christmas,just everything about it.

We cleaned out and folded up our pool and put it away for next year.We also went to our last baseball game of the season.We always love that.We actually prefer the little stadium with the AAA team over going to The Mariners in Seattle.Not that we don't love The Mariners,but the crowds and traffic in Seattle are a mess.We love to go with our cracker jacks in hand.They had a wonderful fireworks show at the end of the game,although it was quite chilly.

We had a wonderful Summer with lots of fun,not too many doctors appointments,but lots of dental visits,as it had been awhile since we went last.We went to several movies,baseball games and bowling several times,not to mention lots of barbecues,making s'mores in the firepit and swimming in our pool.The kids have been feeling pretty good all Summer with very few medical issues,other than Daniel's blood pressure,which we are diligently working at lowering.We started school last week and the kids are doing great.Today we have a Genetics appointment and a few other medical appointments this week and next week Michael goes in hospital for testing for 2 days.After that I'm hoping for very few doctors visits for this school year.

We have some fun times coming up.Our annual Cast for kids ,where the kids get to go on a fishing derby and get new poles,tackle and t-shirts,our annual homeschool picnic is always lots of fun and then probably our last Disney trip for a while.It's just too spendy anymore to go.We are hoping for some real fun times ahead.We are leaving the beginning of October and driving down staying with grandpa for a few days and then going to Disney for 4 days.Well I better get going to our appointment.Thanks for the support and encouragement.God bless,Linn

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Our fruit trees


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Ariel with some of the apples we picked from our trees.

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Our school room all ready to go.

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What happens to a poor little ShihTzu when a little girl owns you.

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Hospital Information:

We are home in Port Orchard,Wa.
Mailing address: P.O. Box 551
Burley,WA.98322

Links:

http://home.earthlink.net/~linngilbert7/linnslittlehomeontheweb/id7.html   Daniel's main page
http://quiltsoflove.com/quilt_2005/daniel_M/daniel.html   Daniel's quilt of love
http://smilequilts.com/danielm.html   Daniel's Smile Quilt.


 
 

E-mail Author: gillinn7@msn.com

 
 

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