A little project we've been working on.

Hello friends,Well we went and had x -rays done today.They didn't see any stones,thankfully,but sometimes x-rays don't show them.Ariel is feeling a tiny bit better today hopefully it stays that way.







I've been working on a little project a page that Ariel and I have been working on called Ariel's memorial tree.







https://www.facebook.com/pages/Ariels-Memorial-tree/523293244380812?sk=messages_inbox#!/pages/Ariels-Memorial-tree/523293244380812?notif_t=page_new_likes




We have a tree in our yard that has the names of kids and adults we've gotten to know through our medical journey.The tree is a pretty pink cherry blossom one and we have pink and blue ribbons on it for girls & gals or boys& guys with the names of the friends we've known who have lost their battle.





We started this tree,because Ariel was having such a hard time dealing with the grief of loss and this was a tangeable way for her to deal with it.We often add ballooons and have some statues in memory of certain kids,like a Hello Kitty for Emily and a frog for Curtis.




Would you please like Ariel's page and if you know anyone who would like to have a ribbon added or a photo please let us know.God bless,Linn

Videos of the kids

Here are some videos I've done of the kids over the years,just thought I'd share.


Ariel's life story





Part 2:




For Ariel




Daniel's story





All three kids through good and bad times.





Make a Wish trips

Blog changes

Hello friends,due to some recent unpleasant circumstances,finger pointing and all the fiery darts thrown my way.
I am going to be making some changes on my blog.

I am tired of all the armchair physicians who don't know diddily squat about my daughter and what's going on with her telling me what to do or not do.And I'm not talking people who offer friendly, helpful medical advice.I welcome that.There are people who just don't get it.So I'm going to lay it out.A couple of my kids have life threatening medical conditions.You can live in denial and say it isn't so,but the facts are the facts.That's why they got Make a Wish trips.The doctor had to sign papers saying this is a life threatening disorder.They have an unknown and hopefully someday known genetic syndrome that all the specialists agree is progressive.I have endured so much pain and hurt recently by some of the people who you would think would care about you the most, that I'm going to be very cautious in what I put out there anymore.



I will be using this blog for mainly fun times,recipes,Bible verses things like that.I am going to try and avoid talking anything medical on this site.I wanted to change it to private,but with blogger you can only have like 80 readers,so that doesn't really work.If you would like more info about what's going with Ariel in the medical sense you can either friend me on FB or send me a request on Caringbridge.

http://www.caringbridge.org/visit/arielmarrero

Sad that I feel the need to do this,but I don't know what else to do other than privatize.Thank you all for your understanding.Linn

More procedures for the Princess.

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The lost month part 2

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The lost month.

Hello friends,It's taking me a bit to get a chance to write here things have been so incredibly crazy.On February 1st Ariel and I went out shopping to buy her an outfit for the banquet the zoo was holding the next day.She was so excited.She bought some very nice black slacks and a pretty blue sequined top.That night we went out to eat with her friend Frances and the next morning we were going to go to breakfast for Nick's birthday and play some video games at the bowling alley.After the banquet we were going to go out for ice cream.Ariel and I had been doing a lot of studying on the fructose malabsorption problem she has that had been causing so much pain in her tummy.We were going to change her diet completely to see if we could get her to quit having such bad tummy aches.That night Ariel got sick, very violently sick.She started vomiting a lot.Due to the fact we have to get seizure meds in her and she couldn't keep anything down I ended up taking her to the E.R.

One of the problems we run into with Ariel is the fact that she is allergic to most nausea meds.She gets Tardive Dyskenesia from them.They decided to admit her and we had to be transferred to another hospital due to insurance issues.Upon getting there we had a very nice G.I. doctor and they figured they would just watch her,well that week they tried a couple of different meds on her that of course gave her Dyskenesia.She  also had several days of having convulsive seizures,where here 02 would drop to 79 and her heart rate would go through the roof.It was quite scary and Ariel looked awful.

I was being told so many different things ,from it was just a virus to they thought she may have a form of Meningitis.She had an Ultrasound,CT scan and then they were going to do a Lumbar Puncture under conscious sedation,well the problem with that is kids that regularly take Benzo's for seizure control have a hard time being put out and they realized that after 5 doses of Versed and 5 doses of something else I can't remember they couldn't do it.Then one night she was having some kind of weird like dystonic episode and she coughed and a huge amount of bright red, clotty blood came out her mouth.It scared me half to death.The team had to come in and suction her out.Ariel was terrified.

Then they called for this Internal medicine guy.This was our first encounter with a crummy doctor.He took one look at her,now mind you she had blood all over the entire front of her gown and said she had a seizure and bit her tongue.That was the stupidist thing I have ever heard.For one thing she wasn't in a seizure and secondly Daniel bites his tongue constantly.I have never seen that amount of blood or that color.Blood from a bite in the mouth is diluted with saliva it is not bright red or thick looking,not to mention after suctioning her they rinsed her mouth out and looked inside it with a flashlight and saw no bites.This brilliant doctor said "I'm sure they are there we just can't see them,"What! He ordered an Endoscopy for the next morning,but said he was sure they wouldn't find anything.

It took them several sticks to get another I.V. in her.Poor girl her veins have always been bad,but when she is getting stuck over and over it gets really bad for her.They finally ended up using her old one that wasn't great.I think I was out in the waiting room for an hour the surgeon called and said her tummy was very inflamed with Gastritis and she had an Esophageal tear,so they would give her meds for that.Ariel was still very sick,looking awful still vomiting quite a lot and the doctor comes in the next morning and tells me he is sending her home with nothing at all for pain or nausea and to just give her gingerale.I couldn't believe he was going to send her home in the same condition she came in,so after going to the patient reps and complaining he said he would keep her but only give her Tylenol and nothing for nausea oh and hospitals aren't for sick people,what?!!!! Yes, I always go to the hospital when I'm well just for the fun of it.

So we went home with the plan that if she didn't get better we would take her to Overlake where her G.I. doctor is at.We came home and Ariel slept for 9 hours and then woke up and started vomiting again,so I made the hour and a half journey to Overlake.At the E.R. they decided to give her Phenergen,well she had gotten Dyskenesia from it at Harrison,but the doctor told me if he loaded her with Benadryl first she would'nt have that problem.So he did an guess what? She still got Dyskenesia and it really scared her.Ariel told me later it's like someone burying you in a coffin and you can't get out or stuffing you in a tied trashbag.Poor girl what a scary feeling that must be.Then the attending came in.At first she sort of looked like the professor type that Ariel never does well with,with her glasses at the end of her nose,but she was kind and caring and very sweet.I loved her.She could not believe any doctor would send her home in that condition.So she admitted her.

After several days of being there she decided to put a PICC line in her and give her TPN feeds.This was the period where Ariel was the most stable I had seen her.She had gotten some color and after all the meds was able to eat the most I had seen her eat in weeks a whole half of a sandwich.

We still didn't know what was causing it.Ikept hearing virus thrown around,which I never bought.For one thing she never had a fever,elevated counts and no one in our house was sick with this supposed horrible virus that shuts your gut down.Ariel was so bummed to have to spend Valentine's day in the hospital,but she made Valentine's for all the doctors and nurses and everyone adored her.Unfortunately the doctor we really liked told me she would be leaving and we would be getting a new one in the morning.I asked if she was nice? She said "she's smart." Again I asked if she was nice? "She's firm." Code for she has a very crummy bedside manner and boy did she.

The first thing this gal did was to send the nurse up with a big needle to inject in Ariel's stomach.I asked her what for? She said "For constipation." "Based on what?" I asked, oh turns out based on her 8 day old CT scan.I refused that.I knew that was no longer the case and this doctor was trying to make out that the big majority of her problem was from constipation,really? Then the doctor comes in and started interrogating Ariel as to why she won't eat.Does she not like the hospital food? she acted like she was purposely not eating because she was annorexic or something.Then she says to her,"Well I would give you an Ultrasound,but your not thin." My mama bear was showing her teeth at that point.

Boy I about lost it and finally asked her to step outside.I asked her what her problem was? and did she not realize my daughters impaired? Get this she tells me she's worked with special needs kids,how frightening is that? And that the parents get mad when she doesn't talk to the kids.I explained to her there is a difference between talking to them and interrogating them and how I didn't care for her comment about my daughters weight.She appologized,but nothing changed,in fact I think she got nastier.She also seemed to be obsessed by anything I ate.At Overlake they are all for making you eat healthy whether you like it or not.Everything in the vending machines are these tasteless ,nasty snacks.I like baked Lays,but these chips are some off brand that taste like dirt and you get like 3 per bag.So I found a Walgreen's in the hospital and bought myself a small individual sized bag of chips and Ariel some cheese and crackers,that she only ate like a few bites of the crackers.She was like " I see you can eat snacks."

At this point I didn't care what she ate as long as she ate anything.Everytime she came in the room she made comments about what food I had in the room.I'm in a hospital not at the grocery store or home or the farmer's market.I'm making due with whatever I could find.
Then she takes Ariel off of everything that was giving her stability and wants to switch her to just Tylenol.I had,had it at this point with her rudeness and nastiness.I asked to speak with the charge nurse.I told her that woman was to no longer care for my daughter.That I did not care for her and she obviously didn't like me or Ariel for whatever reason.The next thing I know she comes in the very next morning and says she's discharging Ariel and again sending her home with nothing for nausea.I was fine with leaving I just wanted away from her nastiness.People like that should not be in the profession of helping people.

So we went home and were hoping we could stay here as long as possible and Ariel would just get better,well she didn't without the around the clock I.V. nausea meds she couldn't keep anything down.Not even liquids.After two days of this we ended up taking her to the E.R.They ended up giving her fluids and several doses of I.V. meds for nausea.They would have admitted her,but we had an appointment with the Internal medicine guy in the morning we wanted to keep.




I'm so glad I did.It's funny because this doctors profile he had long dredlocks and it said he spoke fluent Chinese and he's into accupuncture and karate.I'm thinking this should be interesting.He came in with his hair cut short and was one of the sweetest,kindest doctors ever.He was very thorough going over everything in Ariel's records and was playing with Ariel's squishy bunny.In his opinion this was progression of this syndrome she has causing her seizures.He said it would stand to reason that if you have a Neurological problem affecting your brain and it's all in your central nervous system then what's to stop it from affecting your gut.He went into a lot more medical detail that I can't remember,but he said she really needed a PICC line placed again if for nothing else than to get I.V.fluids.So we spent the whole day in town and she had it placed at St.Joes at 5:00pm.Poor girl had already been through so much being poked and prodded,having unkind doctors and just being so very ill.That night she had a bunch of seizures.

The following day we met with the nurse in Silverdale and she taught me how to do the I.V. fluids at home.We loaded up the mass amount of medical equipment and I decided to take Ariel to Petco one of her favorite places.Our whole month had been pretty much shot at this point.We had missed out on the banquet,Nick's birthday,Valentine's day,the War Horse play I had tickets to and seeing the Globetrotters.I figured she definitely deserved something fun.So she used her gift card to buy some Guppies and a calendar with Shih Tzu's on it and we went shopping at Super Walmart.She told me it was the most fun she's had in a long time.It was so nice to see her smile and be happy after such a tough month.

A new video.