Ariel,Elaina’s Story

Site created on January 25, 2006

Ariel's life: http://youtu.be/XBknrihEISY Ariel is 25 and has an Epileptic syndrome causing severe impairment and brain damage and devastating seizures.She also has Gastroparesis,Fibromyalgia,sensory disorders and IBS with fructose malabsorption and small intestinal bacterial overgrowth that she gets a lot of tummy isssues from and frequently needs treatment for.She was recently diagnosed with Complex Regional Pain Syndrome.It's devastating .She is constantly in pain,but despite all this she always has a smile on her face.

Oh boy where do I start? I guess at the beginning.
Ariel was born 3 weeks premature,which we all thought would be no big deal,since several of her brothers were born that early,boy were we wrong.She turned blue shortly after birth and it took 8 hours to stabilize her.She was then transported to another hospital and given the diagnosis of Respiratory Distress Syndrome.We were told that is may take 4 months to get her out of the NICU and that she would have all sorts of physical problems,but praise God prayer works and after a week they told us to come get her.She just had to come home with a bili blanket because she was a bit jaundiced.She was a bit developmentally delayed. It took her longer to sit up and she never did crawl,but G.I. crawls,but she appeared to be pretty normal and the O.T. dismissed her at 6 months.

Everything seemed to be going along fine.She ran and played and seemed totally normal.Ariel was homeschooled and I did noticed it was taking her a lot longer to learn to read than her brothers,but I thought she probably just had Dyslexia like her oldest brother and would be a slow learner.Because up to this point she was a totally normal little girl very social and talkative and physically fine and as far as we could tell developmentally fine also.She was in plays at church and modeled professionally.We did eventually have her go to a private tutor for a year and that didn't seem to help much. Then things started getting very medically complicated
There were tons more of tests,doctors visits and hospital stays,but this is the main rundown of things.

At the age of 8 lots of tummy problems throwing up and severe pain every time she ate.
9 She had a Tonsillectomy also started declining cognitively.
10 She developed Osteomyelitis in her spine requiring a PICC line and antibiotics spent a week in the hospital.
Also developed C-diff requiring another week long hospital stay.
And had testing done showing significant cognitive impairment and started going to Speech therapy weekly.
11 started having problems with Dysphasia and still declining cognitively.
12 Diagnosed with Epilepsy and given a Neuropsych revealing severe mental impairment.Diagnosed with Static Encephalopathy.
13 Diagnosed with Irritable Bowel and Lactose intolerance.
14 Developed Chronic Tenosynovitis in her wrists and started having a lot of sensory issues.
15 Went into Status Epilepticus and spent a week in PICU/diagnosed with Intractable Epilepsy.Given a trip to Disney World from Make A Wish.
Started having status seizures all the time and was given a spinal tap showing increased protein and pressure.
16 Started having worsening seizures and given another spinal tap once again showing increased protein and pressure causing her to get a lot more testing including nerve conduction and a 2 hour spinal MRI,worsening tummy problems and had a bad bout with an ovarian cyst.
Also found out she is one to develop severe Dyskenesia
.At 17 she started going to an Epileptologist at Harborview and was given a VNS implant.Also told this is all a genetic Epileptic syndrome that causes severe seizures as well as impairment.Also diagnosed with Spondylitis and fructose malabsorption with small intestinal bacteria
She also developed kidney stones requiring 8 days hospitalization and surgery to remove them.
Right now Ariel has been having a lot of problems with trying a new add on med and having increasing tummy issues.
At 19 diagnosed with Gastroparesis had a G/J tube placed and was in and out of the hospital for 3 months.
She also got sepsis requiring 2 weeks hospitalization and a second infection that year giving her another week in the hospital.
Things were going okay after that mostly dealt with things at home and with her local doctors.
Right after her 23rd birthday she developed horrible pain in her upper right.I took her to the E.R. and they kind of blew it off focusing mainly on her kidneys.
A week later she was found to have a gallbladder full of stones and pancreatitis.
That started the whole Gastroparesis stuff up again ,because it seemed she was in remission at the time.
Spent 9 days inpatient a month later 11 days diagnosed with Colitis.
Had another G/J tube placed and ended up spending all of Nov inpatient where she developed sepsis and blood clots due to hospital incompetence.

Needless to stay we will never step foot in that hospital again as long as we live.
On Dec 11,2019 Ariel had an injury in her arm due to a seizure that caused something called Post traumatic fat necrosis that then led to Complex Regional pain syndrome.

It's horrible stuff and extremely painful.You autonomic and nervous system basically attacks itself.This has turned into her nerves literally burning her skin.It's also spread to both arms and her right leg.She is getting Stellate Ganglion blocks to treat this.
At this point in time Ariel is mentally like a 9yr old.She's quite the mixed bag.In some areas she seems older than that in some areas younger and a lot of times it depends on the amount of seizure activity she has.
She loves animals of all kinds,My Littly Pony,Hello Kitty,Lego's her brothers put together for her and Disney Princesses.


Newest Update

Journal entry by linn marrero

Hello friends,I hope you all had a wonderful Valentine's Day 💘 celebrating the people you love.🥰 The day after I took Ariel to Urgent Care Nicholas and I went on our second outing for his birthday.We were going to drive over an hour away to go to this cafe to get these enormous cinnamon rolls,but we both decided we didn't want to drive that far so we went to Tacoma instead and got Legendary donuts. 🍩 Very large also and oh so yummy! 😘 From there we went to breakfast 🍳 and then went to look at some bookstores 📚and came home and played games.🎮

On Valentine's Day there were goodies for all.Ariel and I went to this new little Mexican market in our area.My in-laws used to make the best authentic Mexican food.They also used to get us Pan De Heuvo which is a Mexican sweet bread and so yummy,but not overly sweet like donuts tend to be.Ariel wanted to come she got herself looking super cute and was actually having a fairly good day.She told me she actually felt pretty good,something I never hear from her.She really liked the little store and we got a few things there.Well unfortunately something there that I meticulously scoured the ingredients didn't say it had red dye,but obviously did, she spit it out immediately,but that was all it took and within hours she was in a flare again.It's so very frustrating that so little can put her in flares anymore.I think having to do these shots all of the time is part of the problem.The CBD has definitely been a lifesaver as far as that goes,because it used to take one set of labs to put her in a flare,she is having to take shots twice a day and will until the beginning of April.🙁Then she will have another ultrasound and hopefully the blood clot will be gone.

We did end up getting snow ⛄❄️ the day after Valentine's Day.We got three inches and it was pretty much melted the next day,off of the roads anyway.Like I said before we actually have had pretty warm weather this winter so far.I did have to reschedule her dental appointment too much worry of another flare with work being done.She already got new lesions on her face,arms and leg.We are now staying away from sugar and anything processed.Trying to go all organic to avoid dye.It sickens me how much stuff it's in even some of her medications.💊

The guys and I have done more events.I did another Galentine's party,💕so much fun and Nicholas,Daniel and I went to a Navy concert on Sunday.It was really good all the brass from their band 🎷🎺and we also had lunch and looked around the museum.Ariel made a savings jar for our annual beach trip. 🚤 Something for her to look forward to.We want to go for two days this year and see some different sights.We've been watching videos on the coast and looking at different places.I just pray by that time she'll be done with these shots and we can go and enjoy ourselves.The Mermaid Museum🧜‍♀️ is always on our list of things to do.We're also looking to go to this jetty and scouring the beach for sea glass.🐚

Thank you all for your love and support

Please continue to pray for Ariel ❤️

God bless,Linn

 

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