Ariel Marrero

2007-09-13T08:22:00.000-07:00

Hello friends,Sorry it's been so long between blogs.I have been mainly updating on Daniel's site about what's going on with Ariel,but I figure I should keep with her own site.Things have been busy and hectic.We went to Disneyland in May and had a great time.We spent 5 days there and 1 at Sea world.I didn't feel like we had enough time at Sea World though.We have been doing lots of outings with Starlight in Oregon and it's been a lot of fun.We've been to the zoo,The Beavers Game,had lunch with Astronauts and went to the circus.They really spoil us and it's been great.

Ariel healthwise has still been having lots of issues between Tenosynovitis,numerous sprains and breaks on her wrists,IBS and Epilepsy not to mention her cognitive impairment things have been tough.She's been sick with the flu bug for 5 weeks poor thing,but does seem to be doing better.Well I need to get Nick off to work.God bless,Linn

2006-11-15T10:35:00.000-08:00

Ariel and her friend Heaven having a good time at The Incredibles on ice.It was a great show and the girls had a great time.Unfortunately we realized when we parked we had a flat ,but praise God we were atleast there and not on the freeway and AAA was just around the corner,so after the show we called and they fixed it in about 10 minutes.Unfortunately the day we went to this even Ariel fell down that night and broke her wrist ,so now she has a lovely hot pink cast.This week we are busy making preperations for relatives arrival on Monday.We hope to take them to Victoria if the weather permits.We are also of course getting ready for Thanksgiving,so I have a lot of cleaning and shopping to do this weekend.Well gotta go things to do.Linn

2006-10-16T15:51:00.000-07:00

Hello friends,Sorry it's taken so long to update here,but life has been busy.Ariel's doing ok right now,but has been having problems again with memory and tummy issues again.She will be seeing Neuro this week and a GI doc and orthopedist in November.Right now we are sick with the flu.I can't seem to shake it and it's mighty miserable having this stuff.We have some fun events coming up.We are going to a kangaroo farm on Saturday and may be going to Portland.Please sign Ariel's guestbook and let her know you stopped by.God bless,Linn

2006-09-09T21:22:00.000-07:00

Ariel had a great time fishing today.We went to a Cast for Kids event and it was wonderful.There was so much for the kids,from fishing,new tackle boxes,rods and reels,t-shirts,hats & life jackets,to face painting,barbecues and plaques.We had a wonderful day and I want to thank all the wonderful families who volunteered.This is Ariel and her new friend Kira from the cast event.Ariel had her Endoscopy this week and again they saw nothing.The G.I. doc thinks her swallowing problems are Neurological.Hopefully the Genetecist can give us some answers.Please keep Ariel in your prayers that we get some answers for her.God bless,Linn

2006-09-03T08:26:00.000-07:00

Lots going on with Miss Ariel these days.Tuesday we went to her speech lessons and she did very well.We are thinking that the anti epileptic meds are helping her retain things better.Wednesday we went to the Genetecist and went over everything.She said she will take a month and gather up all Ariel and Daniel's labs,MRI's,x-rays,biopsies and records and go through everything with a fine toothed comb.She said after a month she will get back to us and tell us what blood work and labs she wants done and any muscle biopsies she may like.She seems very determined to find an answer.I sure hope so it's so frustrating knowing somethings wrong and not knowing why.Friday we went to Ariel's Neuro and she was officially diagnosed with Epilepsy and cognitive impairment or Encephalopothy,which is a fancy name for the same thing.He said I guarantee you there will be more diagnosis for her.He believes she may have Mitochondrial disease.Especially since it can manifest in so many different ways.Thursday she is supposed to be getting an Endoscopy to see what's going on with her tummy,since she has so many issues with it right now.She's on 3 different tummy meds right now just to eat and I told them something isn't right here.I need to check my insurance though to see if Endoscopy is covered or we may have to postpone it.Well need to get ready for church.God bless,Linn

2006-08-30T23:02:00.000-07:00

Hello friends,Sorry I have been so bad at updating things are just busy,busy and about to get busier with school starting.So far all labs look okay with the exception of one and I'm not going to get into that one until I talk to Ariel's Neuro because it may be something or nothing.We went to the Genetecist today and she's going to take a month going over all Ariel & Daniel's records and seeing if she can find anything big picture going on.I sure hope she can figure out something.Then she will do more labs and possible biopsies.So more waiting Ugh!!!! Friday we go to Neuro so he may offer some light on things hopefully.Well you all enjoy the last few days of summer.God bless,Linn

2006-08-14T08:37:00.000-07:00

Hello friends,Sorry it has taken me so long to get back to you.Even though I know a lot of you read Ariel's updates on Daniel's page as I often put them there.Things are going okay in our neck of the woods.Doctors,doctors and more doctors.Ariel underwent labs for another whole host of things like Mitochondrial Disease,Fragile x,DNA and Chromosonal testing whew!They take a while to get back like a month,but aleast they aren't as scary as the Krabbe and MLD.Friday she went to the doctor,because she pulled ligaments and sprained her arm.She's in a hard splint and we see the Orthopedist today.Poor girl can't ever get a break as far as hurting herself goes.I think it's because of the Absence seizures where she's blanking out all the time.We are hoping to go to the beach again and do some more fun things before we have to head back to school.We will also be heading to the geneticist at the end of August.Well I have an appointment myself.God bless,Linn

2006-08-09T19:39:00.000-07:00

Hello Friends,Praise God Ariel does not have MLD or Krabbe we are so thrilled.Now the search goes on for what is causing her to have the mental deterioration and seizures.She went today for more labs testing for Mitochondrial,Fragile X and several other genetic syndromes.Hopefully we can figure out what's going on.Besides the mental deterioration she has some odd behaviors at time.She does not like loud sounds or change at all,she is deathly afraid of elevators and heights.She has lost abilities like to use scissors and can't even turn the shower on for herself.Something is just not right.I sure hope they figure it out soon. On another note I am absolutely disgusted that you spammers would put your garbage on my daughters medical website.She comes here for support and do you know how discouraging it is for her when people leave that junk,when she thought that someone signed to give her support.I will not read a thing you put,but just delete it.

2006-07-27T23:38:00.000-07:00

Hello friends,Today was a toughie.I had to take Ariel to Children's Hospital to get her blood drawn for MLD and Krabbe.I look at this picture and it makes me want to cry.Ariel is so fun loving and to see where she has regressed to breaks my heart.Even if it's just from Epilepsy and not MLD her cognitive function is very poor.Then to think of the possibility of what if she does have either of these,then what?Please keep praying for Ariel and for the family and that my sanity holds up.We have not said anything to the kids and we won't,unless she tests positive for it.I will probably be spending these next 10 days holding her closer,snuggling her more and spending a lot of time doing the things she loves most.I'm glad we will be getting to church this Sunday.We had missed days because the heat was making Daniel so ill.I'm glad I'll go no matter what.I could sure use some uplifting news.God bless,Linn

2006-07-25T23:29:00.000-07:00

This pic shows my little jungle girl.Ariel loves animals and she's so good with them.She has a guinea pig and dog that she dotes on.Now for the awful stuff.After finding out she suffers from the same type of Epilepsy her brother has her Neuro wants her tested for MLD and Krabbe,which are both fatal.It literally makes me sick to think about it.I'm hoping that it's just the Epilepsy happening at night that is causing her cognitive problems.She's such a complicated case and it took me two years of yelling and screaming at doctors and saying there's something wrong with my daughter before they'd listen it just made me nuts.My insurance company are already giving me hassles about the testing and it looks like we are going to go through a bunch of red tape.As if having this testing done isn't going to be stressful enough they have to add more too it.Please lend my little girl your support and especially your prayers and if you get a sec can you please sign her guestbook.Thank you,God bless,Linn

2006-07-23T09:54:00.000-07:00

I thought this picture was cute Ariel the turtle.Ariel had speech lessons this week and we had a tea party with all the terapists.We did it in real old fashioned tea party style with china and scones and little cookies and it was a blast.Ariel had so much fun we were excited and happy for her.I got some very bad news this week.Ariel's IQ showed her in the moderately retarded range and I'm devastated.Now we have to redo everything in speech and go over everything all over again and figure out where do we go from here.I'm going to speak to her Neurologist this week and ask him.I'm just wondering did she have this from lack of oxygen at birth or because of seizure activity or what? It's so frustrating,but it makes sense as to why at 12 she can only do kindergarten level work.Anyway more tests and tests and tests ugh! Yesterday we went sailing and to the mariner's game.Well i need to go clean my house.Please sign ariel's guestbook and let her know you stopped by.God bless,Linn

2006-07-19T10:39:00.001-07:00

Hello friends,I'm sorry it's taken me so long to update.We are still in waiting mode for Ariel's VEEG to come back and Neuropsyche report.Her ankle is severely sprained and she's on crutches and very unhappy about it.I'm hoping we don't have a repeat of last years swelling with her wrist that went on for 3 months.It would be a bummer to not be able to use her leg for so long.We will keep using this blog for journal updates,but another page is being created for her as a cover page.Well I need to get going doctors stuff this morning.God bless,Linn

2006-06-21T08:14:00.000-07:00

Hello friends,I just wanted to let you know Ariel will be going in hospital for her VEEG on July3rd-5th.Not a real fun way to spend the 4th,but oh well I wanted to get this done to figure out what's wrong with her.Her pediatrician wants us to go do genetics testing,which would probably be a good idea.This photo is from our trip to Disneyland in May.We had lunch with the princesses at Ariel's Grotto and boy was the food good.Please leave Ariel a message and let her know you're here.You just put it under the words where it says comments.thanks and God bless,Linn

2006-06-15T22:07:00.000-07:00

Hello friends,I hope you're all doing well.This week has been sad and hectic.We have been having tons of doctor appointments and are finally getting some answers.The week started on a sad note with the passing of sweet little Jacob.We are so sorry for the whole Duckworth Family.Monday Ariel had an EEG and to our surprise showed that she is having seizure activity.Tuesday she had her Neuropsyche evaluation and we don't quite have answers on that one yet.Yesterday she had an MRI that turned out to be normal,which was a huge sigh of relief .Today we saw the Neurologist.He said some people can have seizure activity without seizures,but considering Daniel's history he thinks she probably is having them.He wants her to have a 48 hr VEEG and then will probably put her on Topamax and see how that does for her.I'm still stunned and hope she doesn't go the same route that Daniel has.Well I'm going to head off to bed.God bless,Linn

2006-06-11T16:11:00.000-07:00

Wow how exciting our first day here. I created this blog,because I wanted to be able to add pictures and make it more personal for Ariel and Caringbridge doesn't let you do that anymore.I'll be able to add more info here.Tomorrow is Ariel's EEG.We stay up all night tonight and then she has to go to sleep for the EEG.Hopefully we will know something from it and get some answers to what's going on.