Journal

Thursday July 02,10:09 PM PST

Hey what do you know I finally figured out how to resize on this computer.Now all I need is a new camera,which I will definately have to purchase before Ariel's wish trip.Now I can put some updated pictures on here.Here are some pics of her flowers and balloons from friends who visited at the hospital and she got a big bouquet of balloons even after these ones and they are still floating.I have some pics of Ariel in hospital on Gilbert and my phones,but none from the camera.To be frank she looked so awful I didn't really even want to take pictures.

One of the few photos of Ariel in hospital.Sorry it's so blurry it was taken by phone.In this picture Ariel is actually looking better on her 5th day in the hospital.The woman sitting next to her was one of the CNA's that was required to sit by her bedside the entire time.Notice her bed is padded with seizure pads to prevent her from hurting herself during either a seizure or a flailing movement from the med reaction.

Hello friends,Well the doctors office finally called me back with a plan for Ariel,but dumb me forgot to ask how long I can let her seize for before I call paramedics or she needs to be taken in.Normally if there are breathing issues involved I will call the paramedics,except in Daniel's case where we know what his seizures will do and how to deal with them,but even with him if they go for an extended period or he gets hurt during one of them like in December where he broke and dislocated his shoulder we will call.Daniel's doing pretty well this week a bit spacey at times,but okay.He has worked at the fireworks stand everyday this week and the veterans that run it love him.They say he is quite a salesman.Ariel has been doing okay,not great but okay,that is until this morning.She woke me up at 4:00am doubled over and looking pale and sweaty.I also had been concerned about her cough as it has gotten worse and she was sounding a bit wheezy yesterday.Anyway I ended up having to take her to the E.R. I had my bags packed already in case she ended up hospitalized.We got to Mary Bridge and it was pretty quiet,which was nice.Unfortunately we had the same doctor who messed up Daniel's shoulder by trying to pop it back in to place when it was broken and dislocated.She comes in the room with a major attitude.I told her what was going on with Ariel and after looking at her charts and how pale and awful looking Ariel was she started to be a bit nicer.Anyway she did an x-ray of her tummy and chest.Her chest looks good.She said the Pneumonia is cleared up,but the cough may linger for a while.Her tummy had to do more with her Irritable Bowel Issues.She said that a lot of times when you're given so many loads of drugs it will slow your motility way down,so today she is to eat bland stuff and things like chicken soup,Jello and popsicles.

Ariel had,had a lot of G.I. problems from the time she was about 10.She couldn't keep anything down or would have such severe pain after she ate it was horrible.The G.I. did a million tests on her and she was shown to have a few issues like Lactose Intolerance and swallowing problems and reflux,but we seemed to never get to the bottom of what was going on.I finally realized we needed a new set of eyes upon her and went to her current G.I. who said she has IBS keep her away from this and this and this and from then on she has been so much better.We do occasionally have to use Maalox and our personal favorite Tummy Comfort Tea.That stuff is the best it works better than any meds.I just put a TBSP of fiber in it and usually it clears up her tummy problems within 30 minutes.Unfortunately this morning that was not the case.Poor sweetheart I just feel so bad for her with these constant appointments and constant pain and problems.Not to mention the financial drain it's putting on us, from the gas from running back and forth to the doctors,hospital and E.R. to the co-pays and prescriptions.She is sleeping now.I wish I was I am so tired.On an exciting note Make A Wish called and said they got the papers back from Dr.A and the wish granters would be out in 2 weeks to ask her,her wish and I told them we already know it.She wants to do something with animals at Disney World,eat with the princesses at Cinderella's Castle and feed fish to the dolphins.They had told me that Disney is kind of frowning on doing extra stuff anymore,because the majority of wishes are for Disney theme parks and there's just too many kids wanting to do stuff with thme,but our local zoo may let her be zookeeper for the day and then she would get to do a Disney trip as well.She will most likely get a send off party as well.Daniel got a bon voyage party and Godfather's Pizza donated his whole party for like 50 people it was so neat.She wants to go to The Rainforest Cafe for hers.Like I said before we will probably go in November or the first week in December it depends on what Ariel wants to do and what Make A wish's schedule is like.As far as the 4th goes we have a few plans just for around the house though as Ariel's just too unstable right now to do much else.We are planning to barbecue maybe play croquet and do a few fireworks.Also on another not our boy will be home in 9 days.We are so excited.I hope you all have a wonderful 4th.God bless,Linn

06/30:Hello friends,Well I just know we are going to end up in the hospital again.Ariel was seizing again yesterday.Not as much as Sunday,but I'm afraid it's like a fire that is smoldering ready to burst forth into flames at any second.The last time she started doing these Clonic Seizures,which are very rare,in fact when you google them you only get like one page of information. But anyway they came fast and furious until she went into status.I think it was in a matter of 2 hours total.Another thing that is very upsetting is I don't know what's going on with Mary Bridge,but they are making me very upset.Yesterday I called because of her clustering with the seizures as they really never gave me a plan after leaving the hospital.They gave me a paper for first time parents of seizure kiddo's,that says your child has had a seizure.Give me a break I could write that brochure.Anyway I was calling yesterday to discuss a plan about Ativan use as I had given her some on Sunday and it did nothing for her at all.They never called me back,so someone is not logging things down properly.The last time this happened was on a Friday about her dizzy spells and the Neuro on call that called me back said it was never recorded that I called,so obviously that is happening again.I do have an appointment to see her doctor scheduled on the 1st that I may end up keeping,since I forgot to ask him that on our last appointment.I do have my bags packed,my house cleaned and my bills payed,the ones I could afford to pay anyway,because the tire expense and the expired tab renewal fee and all the co pays and prescription costs are really taking a bite out of the paycheck.We are trying to plan something small for the 4th,but I figure Ariel and I will probably be in the hospital,hopefully not though.Daniel's excited because he gets to work at the fireworks stand again this year.I stay there the whole time,since he can't be left alone.He was hoping I would drop him off,but if he had a Grand Mal they wouldn't know what to do and since he always stops breathing and seizes pretty violently I wouldn't want to put them in that situation.Daniel's been pretty good at accepting his limitations.He knows he will never get a drivers license and has accepted that.He would really like to work at Costco to save up for cooking school and we know a guy that works there and has seizures,he takes the bus up there,so it can be done.On another note my darling boy will be home in 12 days.We are so excited,just hoping we will not be dealing with crisis the whole time,but if we are Bret says no matter it will feel like home.Anyway everyone have a wonderful day.We love you all thank you again for your support and prayers.The kids are really enjoying their guestbook pics.Ariel's guestbook is being a bit funny,but you can sign it.After you put a graphic in try hitting refresh and it will usually work.God bless,Linn

06/28:UPDATE:Last night around 11:00pm Ariel started seizing again.She was doing that same jerking on her left side that happened 3 weeks ago when she ended up in Intensive Care.Today she did it all morning for several hours.I called Mary Bridge after hours and they gave me a consulting nurse.I mainly just wanted to get a message to The Neuro on call,which I suspected to be our doctor since he had been on vacation.She must have asked me a hundred questions,which I was not in the mood to discuss,but had to rather firmly tell her I was done talking to her and that she need to call the Neuro.She finally agreed and called back with a plan for Ativan(oral valium)I gave her some tonight and am just watching her.I went ahead and packed our bags in case we end up in the hospital again.I hope not.Michael also had a seizure tonight and I am just tired of the whole thing.Please keep praying for Ariel.God bless,Linn

06/27:Hello friends,This is probably going to be a very long update,so you may want to grab some coffee,tea or lemonade and sip while you read.Well another exhausting week is done with.I really want off this crazy merry-go-round.I have been at the doctors every day this week,for the last couple for that matter.It seems that even the smallest things turn out to be the most complicated.Wednesday morning I took Ariel to our family physician,who was also on vacation.I really think June is a very poor time to get ill,because all you get are interns and such,while the doctors are out funning & sunning,not that I begrudge them of that I know they work hard.Anyway we went,because Ariel's arm has been hurting her and it's quite black & blue.With all the banging around she did I wondered if she didn't have a small fracture.We went in and met the nurse practitioner who was taking over for Dr.T while he was out.She decided she wanted to discuss all that was going on with Ariel and so a routine visit turned into a 2 hour visit.We discussed everything at length including all the discrepencies about the whole Lyme business.We decided she definately needs the Western Blot test,but will have to wait 2-4 weeks as it said that's how loing you have to wait after taking Doxycycline and Prednisone.She did look at her arm and determined it was just severely bruised from all the I.V.'s and banging around.She wanted her to wear a splint and to get some labs drawn to check levels and such as Ariel had been acting increasingly drunk.I will have to hand it to Nurse Sherry she is very thorough and I think will be a valuable asset to our team.

After the appointment I decided it was time for the kids to have a break and have a little fun,especially since we are finally over the flu bug.Our local bowling alley has a great summer special all games and shoes for only $1.00 a game.We went and then went to the restaurant and got some snacks,but unfortunately all good things come to an end.It seems there are some new owners and not only was the food jacked up quite high and not very good at all,but it was $2.50 a game and for shoes,so we will probably not be doing much bowling anymore.It was such a bummer as that was always one of our favorite things to do in the summer.Anyway we all had a good time and Ariel took her anti epileptic meds as you can't take them before a draw,anyway the drunken behavior started coming out again and so I realized it was the increase in Topamax that was causing it.It must have been too strong for her.We went home got some housework done and just relaxed a bit as she had a VEEG scheduled for the morning and so that meant sleep deprivation a thing I just hate.She was to go in at 10:00am and be there until atleast 4:00pm.We stayed up most the night.Ariel only got 3 hours of sleep and I slept a bit longer and her daddy watched her.I had to drive and needed the rest.At this point Ariel was crying because she was so tired of going to the doctors and being poked and prodded,but unfortunately it is a necessary evil,as she has not been quite the same since all of her seizures 2 weeks ago.We got there and waited and waited and then they brought us in mapped out her head and they stick these strips with this nasty model airplane type glue stuff that just stinks and gives you a headache.They hooked about 24 wires to her head and told us to hang out and watch movies all day.Unfortunately they couldn't get their DVD player to work,but did manage to get the VCR to work and so we watched Disney videos all day.They unhooked her at 4:30 and she had asked that we go to The Spaghetti Factory to eat as we were starving and you can get a great meal there for cheap.We ate and came home and crashed.I was so so exhausted and so was Ariel.

The following day we were to have an appointment with Dr.A the kids Neuro who was finally back from vacation.He is such a wonderful man and genuinely loves Michael,Daniel & Ariel.Daniel's had him the longest at 6 years.He helped Daniel with his seizures when everyone else gave up and hope of giving Daniel control.In between all these appointments I was taking about 15 calls a day from doctors offices and nurses and our Pediatric case manager.I love that woman she has been so helpful to us and I asked her if she could stay forever.She laughed I told her of how sick of fighting everyone all the time and it was nice to have someone in there fighting with us.Anyway We saw Dr.A he was quite concerned about what's going on with Ariel.Told me her EEG is one step above slow and she's showing quite a few seizures in her sleep.He believes that all of this is just because her seizures have changed to convulsive,but he said because of the protein in her spinal fluid it gives him an excuse to run more tests.He thinks the protein build up was due to all the seizing.We also discussed splitting her Topamax in 3 doses so it doesn't affect her so much.Lastly Dr.A informed us that Ariel is now in Intractable status and that she would be getting a wish from Make A Wish.Now you know why I have all the Disney stuff on here.It's sort of a bittersweet pill though.You have to be considered life threatening to receive one and Daniel already got a trip in 2004.His trip was so wonderful we went to Disneyworld and stayed at Give Kids The World that place is like a theme park in itself with movie theatre,ice cream parlor,mini golf,arcade and so much more.Daniel also got to be The Lucky Dog for the Huskies football team and got a $700.00 check from Walmart for him just to have fun during his trip.Unfortunately on the way home we got a flat tire.Our spare is underneath the van and unfortunately it would not budge.Gilbert beat it,pried it,hit it and everything else he could think of and it would not come loose.He hit himself twice with the jack.We ended up driving on our flat down the road to Les Schwab and had to purchase 2 new tires for $200.00 an expense I wasn't planning on,but I need reliable transportation for doctors appointments and E.R. trips if need be.I called when I got home and talked to the wish manager Trina who I have known for years as she coordinated Daniel's trip and I have volunteered for Make A Wish for years and we discussed some different things for Ariel.Disney has always been what we call our happy place.We have been blessed that for the last 5 years we have got to go almost every year,sometimes due to not so great circumstances that ended in our favor,but it's our place to get away from medical woes and worries,bills and just let the kids be kids.We are coming up on the 7th anniversary of Daniel's Epilepsy and they have all lost so much of their childhoods due to seizures.It's nice to watch them be kids and have fun if only for a week.

Ariel has decided she wants to go to Disney World and work at Animal Kingdom for a day and possibly go visit grandma and grandpa that live in Florida.So the wish manager and I are putting our heads together to try and make it super special for her.She will want to have a party At The Rainforest Cafe and maybe lunch with the princesses and see some shows at SeaWorld.We would go the first week in November.Right now it's just too hot and crowded.The kids are on meds that make you not sweat and so they just couldn't be in that hot sun as the could get heat stroke.It also gives me time to save up a little and lose some weight.Eventhough Make A Wish pays for everything it would be nice to have extra to do some extra neat things,although Make A Wish will provide plenty of that I'm sure.We are going to make up some kind of calendar to count down the days until Ariel's wish trip.

So we are going to spend the day looking through brochures and the Disney World webpage and decide everything that Ariel wants to do and make a scrapbook page for her wish granters as she is very shy and sometimes quite out of it.We did the same for Daniel as he was having tons of petit mals at that time.As far as Daniel goes he's doing quite well right now.I told him to behave seizure wise as I can only handle one seizure kiddo at a time.Michael is also doing well.He's staying with Nick as he watches grandma's dog while they are out of town.Bret will be coming home for almost a month in 2 weeks we are so excited and I will take Daniel for a day out today.As I said before he and Ariel can't do much like stay at grandma's because their seizures are too severe and so we try and do special things with just them.Michael's seizures are pretty well controlled so he can go to camp outs and pool parties and such.Anyway thank you all for your prayers and support it is so appreciated.Also if you could please sign Ariel's guestbook and maybe put a princess or Disney graphic in it she would love that,she especially loves Jasmine,yes I know you would think she would love Ariel,she does like her,but really likes Tarzan and Jane and Jasmine,maybe that's because she looks more like her.God bless,Linn