Make A Child Smile

Ariel's Story
written by mom Linn

Ariel was born 3 weeks early on May 15, 1994. She joined her 4 brothers Nicholas, Bret, Daniel & Michael. Shortly after she was born, she started gasping for air and turned blue. We found out she had severe Respiratory Distress Syndrome. They put a line into her belly button and also placed a Ventilator on her. It took them a total of 8 hours to stabilize her, then they transported her by ambulance to NICU at Tacoma General Hospital. They told me she would be in the hospital for 4 months, but thanks to the power of prayer and great medical help, she got to go home in a week.

We were told she would need therapy. Ariel started having therapy for her legs as she had Hypotonia, hyper extended joints and Pronated feet. It took her almost a year for her to sit up and she never did crawl. She also had a blocked tear duct, but after that first year she seemed to be improving and doing fine.

I started doing preschool work with her at the age of 4 and despite how hard she worked year after year, she just could not get the concept of reading. At the age of 6, Ariel was picked up by a professional modeling agency. She did a few ads for some nationally known department stores and some fashion shows, but it didn't take us very long to see the ugly side of that business and pulled her out of it.

Around the age of 7, when Ariel's brother Daniel was 10, he started having severe seizures and that really took a toll on our family, also Ariel had a lot of sore throats and ended up getting her tonsils taken out. By the time Ariel turned 9, I realized that we needed help for her reading problem and hired a tutor. She went to the tutor for a year, but it did nothing but make her dislike school more. Then I took her to Speech, Language and Learning.

They formally tested her and asked if her problems were just reading based. I thought about it and told them "you know, she seems to have problems understanding things". They formally tested her and found that she had major delays in all sorts of areas of comprehension as well as reading, but her speech was fine. They put her on the list for speech and told us we would have to wait for 6 months.

At the age of 10, Ariel began complaining of pain in her tailbone, she also started having severe tummy aches. After seeing her Pediatrician and getting some blood work done, they said it was probably a pulled muscle. The pain was getting worse and her labs were elevated as far as inflammation goes. A week later, she was collapsing on the floor in pain and couldn't walk. We took her to Urgent Care and they wanted to admit her, but this hospital was over an hour from our house and we asked them to admit her to Mary Bridge... big mistake the doctor there was terrible and said she was wasting a bed. We fired him and told him to get out of her room and asked for another doctor. The Orthopedist came and ordered an MRI of her spine and we found out she had Osteomyelitis (infection in the bone) in her tailbone. They immediately placed a PICC line and she got antibiotics for 6 weeks. After that, she got C-Difficile from the antibiotics and spent another week in the hospital.

After this incident, she seemed to have never ending medical problems. Her legs would just collapse and she would fall to the ground. We believe she was having drop seizures. She had a biopsy of her spine as she was still having pain and was starting to get treated like a Hypochondriac. She was also having a ton of tummy problems, swallowing problems and wrist problems. Her wrist started swelling for no reason and it had a rather large lump in it. She was casted 5 times and every time they would take the cast off, it would swell again. We found out she had Tenosynovitis, something only adults usually get. We saw a new G.I. who diagnosed her with Irritable Bowel, swallowing issues and Lactose Intolerance.

At this time she was really regressing mentally and we were getting quite concerned. She had a Neuropsych evaluation that gave her an IQ of 42. We don't believe it's quite that low, but we made an appointment with Daniel's Neurologist who tested Ariel and discovered she had seizures as well as Daniel. He went through all of her medical records from birth and diagnosed her with Static Encephalopathy (permanent non-changing brain damage). He believes this is from birth, it just became more apparent as she became older.

She was put on Anti Epileptic medications and they did seem to help some. She started having a lot of petit mals and falling a lot and would break her wrists frequently. She was checked out for JRA, but they said she didn't have it, but when her Tenosynovitis flares up, she has to be put on Arthritis medications to treat it. Also Ariel's brother Michael fell out of a tree and got a concussion and he started having seizures as well. Ariel's seizures seemed to be fairly well controlled, but speech therapy stopped giving her lessons because 3 years went by, and she made almost no progress.

Fast forward to her 15th birthday in May 2009. She had a great party and a lot of fun, but shortly after this, she started having dizzy spells all the time. I took her to a couple of different doctors who kind of "poo pooed" her spells and her Neurologist was out of town. On June 7th, I talked with the Neuro-on-call who believed she was having Simple Partial status seizures and said to give her Ativan (oral valium) to break them. By the next morning she was staggering all over the place and acting very strange. I took her to the ER and they said it was just from the Ativan. I also started noticing she was having this jerking on the left side. I took her home as they told me to, and she started having a bunch of convulsive seizures in the car. We got home and she had 3 more and then a Grand Mal Seizure. I called the paramedics and she was taken back to the hospital. She had several more in the ER and a 30 minute Status seizure. She was taken to Intensive Care and had a Spinal Tap and MRI done. She was also tested for hundreds of things.

Ariel was in hospital a total of 1 week and her seizures are now considered Intractable, which is when they are not easily controlled by medication. She goes to the doctor almost daily and tested positive for Lyme Disease, although they said we need to repeat the test in a month to confirm it. She's having seizures all the time now, and is quite sad about it. Also her brother Bret will be going to Iraq in August.

Ariel is a very sweet girl who loves animals. She is at about a k-1st grade reading level, comprehends at about a 7 year old level, but socially is a bit older. She is very shy, as she is afraid she will be made fun of, due to her disabilities, and has had a tough time. Knowing you don't read or understand well, is very tough. She's also had a lot of troubles up until now, because for a long time the medical community didn't believe her about the pain she was having. Now we have great doctors though. Hopefully we can get to the bottom of what's going on with her. We thank you for your prayers and support.

(Story and Interests were last updated July, 2009)