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Tatiana's Profile

Full Name: Tatiana Nai'a Abel

Nicknames: Tati, Tana, Tia, Tiana, Tatiyaya (what her brothers used to call her), Miss Boo, Booga, Chicka-boo, and Miss Chi

Birthdate: January 05, 2004

Passing: April 13, 2010

Three Words To Describe Me: Wonderful, Happy, Beautiful, Angel

Special Skills Or Talents: I loved blowing kisses, hugging, snuggling, clapping, tickling myself, smiling, kicking when excited or happy, singing, making animal noises, playing, and having fun.

Favorite Colors: pink and purple (My mother thinks they look beautiful on me)

Favorite Food: Breastmilk was #1 when I was birth to it's: applesauce, yogurt, cottage cheese, macaroni and cheese, fruit snacks, apple chips, cereal, chicken bites/popcorn chicken, popcorn shrimp, fish sticks, taquitos, bread, chips, pretzels, cookies and crackers

Least Favorite Food: veggies (although I like my mom's green bean casserole, veggie chips and Calbee Snack Salad Snapea Crisps) and most non pureed fruits

Parents: Brian and Crystal Abel

Siblings & Their B-Days: Delbin Zachary - September 05, 2000; Jaedan Wyatt - May 15, 2002; and Teela Katarina - April 15, 2008.

Children: none

Best Friend(s): Brian (my dad), Crystal (my mom), Delbin (my brother), Jaedan (my brother), Teela (my sister)

People Who I Share The Best Memories: My friends and family!

Most Influential People: My family, God, and my friends.

First Words Or Phrases: Hi, Bye Bye, More, Tickle, Belly Button, No, Yeah, Dad, Mom, Momma, Want, Nose, Foot, Peek-a-boo, Aah-oh, All right, Stop, animal sounds, What are you doing?, Where are you going?, Help, Out, Down, Up, Yay, Night-night, Sitting, Rocking, Kicking, Snuggle, Hug, Kiss, Kiss the girl, Eat, Thank you, etc.

Words Or Phrases I Hate: Any cuss words, swear words, or anything negative!!

The Great Outdoors...

Favorite Things To Do In The Summer: Being outdoors, swimming, laying in the grass, my mom reading/singing to me, listening to music, traveling, etc.

Favorite Things To Do In The Spring: Playing in the rain, smelling all the beautiful flowers, my mom reading/singing to me, etc.

Favorite Things To Do In The Fall: Drawing pictures with finger-paints, my mom reading/singing to me, listening to music, etc.

Favorite Things To Do In The Winter (We live in Oregon it rains in the winter, but we can find snow in the mountains): Playing in the snow, sledding with my mom, learning about Christ's birth, etc.

Favorite Day: When I get to be with my dad all day!!

Favorite Months: January (my b-day) and December (Christmas)!!

Favorite Holiday: My Birthday

Favorite Book(s): Any kids book with textures that I can feel with my hands, any childrens' books that I can listen to (books on tape, my parents reading them to me, or online audio books).

Animals, Insects, etc...

Favorite Animals: I like all kinds of animals

Pets & Their Names: I have a big dog named Prince who is a standard poodle and coonhound mix. We are looking into a mini pony for the blind.

Favorite Toys: Fisher Price Dance Baby Dance Classical Stacker, Lamaze Freddie Firefly, Lamaze Mommy & Tommy Dolphin, all rattles that I can manipulate, keys

Tv, Movies, and Theater...

Favorite Movies: The Little Mermaid

Favorite Tv Series: Charlie & Lola, Go, Baby!, Wonderpets


My Favorite Music Groups/Vocalists: Laurie Berkner, Raffi, Moby, Tears for Fears

Favorite song(s): Baby Beluga by Raffi, Twinkle Twinkle Little Star, Raoul And The Kings Of Spain by Tears for Fears

Musical hobbies: I like to play my Fisher Price Kick & Play Piano and my other instruments. I like to sing E-I-E-I-O, Row Row Row Your Boat, Eensy-Wensy Spider, Patty-Cake, hum Jingle Bells, etc.

Involvement (Clubs, organizations, etc.)...

I am a member of The Church of Jesus Christ of Latter Day Saints.

Places I have Lived...

Live in Oregon

Lived in Florida

Tatiana's Diagnosis

Optic Glioma Juvenile Pilocytic Astrocytoma (Brain Tumor that grew from the optic nerves)
Totally Blind w/no light perception (NLP) in both eyes
Optic Nerve Atrophy (involves tissue death of the nerve that carries the information of vision from the eye to the brain)
Nystagmus (refers to rapid involuntary movements of the eyes)
Diabetes Insipidus / Water Diabetes (caused by a deficiency of the antidiuretic hormone (ADH) a.k.a. vasopressin which regulates the body's retention of water)
Adrenal Cortical Insufficiency (inability of the adrenal gland to produce adequate amounts of cortisol in response to stress)
Panhypopituitarism (deficiency of all anterior pituitary hormones)
Hypothyroidism [Type: Secondary, Origin: damage to the pituitary gland...Occurs if the pituitary gland does not create enough thyroid stimulating hormone (TSH) to induce the thyroid gland to produce enough thyroxine and triiodothyronine (thyroid hormones)]
Thermo-regulation Disorder (has trouble regulating her temperature on her own) Thirst Recognition Disorder (has trouble knowing when she is thirsty)
Seizure Disorder (the brain's electrical activity is periodically disturbed, resulting in some degree of temporary brain dysfunction)
Hypotonia and Cerebral Palsy (condition of abnormally low muscle tone (the amount of tension or resistance to movement in a muscle), often involving reduced muscle strength. Brain disorder involving movement. Non ambulatory on her own)

Tatiana's Updates
(written by Tatiana's mother, Crystal)

Tatiana had surgery on September 21st, 2004. She was diagnosed with Optic Glioma Juvenile Pilocytic Astrocytoma. It grew from the optic nerves on back and was lemon sized. It had engulfed the pituitary gland and carotid artery. The neurosurgeon left 5% on the optic nerves because of not wanting to cut them completely out. It had also metastisized to the lining of the brain but the neurosurgeon said he thought that he had cut the blood supply to it sufficiently. She had a stroke after surgery. The neurosurgeon told us that the stroke happened in the best possible spot of the brain to have one, so he didn't feel it would cause her any trouble down the road. She was put on anti seizure medications for the few seizures and stroke that she had after surgery. She also was diagnosed with Diabetes Insipidus, Panhypopituitarism, Adrenal Cortical Insufficiency, Hypopituitarism, and Hypothyroidism. All of which have to do with the pituitary gland not functioning correctly due to the tumor and surgery. The ophthalmologist diagnosed her with Optic Atrophy and told us she is blind with no light perception.

February of 2006
Tatiana is now completely off of the anti-seizure medication. We attribute it to the help we have had from family and the kind people at Therapeutic Alternatives Health Center in Pennsylvania who shared the "Life Vessel" with us. The "Life Vessel" is an 8 ft x 4 ft x 3 ft box with electromagnetic, acoustic, and mechanical vibration. The "Life Vessel" detoxifies and removes stress from the body. It also helps balance the Autonomic Nervous System (ANS). The ANS regulates every conscious and unconscious function and organ within the body. A balanced ANS is critical to a balanced and effective immune system. If the ANS is out of balance, health will deteriorate and may not improve no matter what else is done.

September 5th, 2007
Tatiana had an MRI today and an Oncology appointment. Her Oncologist said he saw her MRI films and said he could not see any sign of the tumor!

October 2007
Tatiana had a seizure while we were waiting for our baggage in the Las Vegas, Nevada Airport (My mom, Tatiana, and I had gone there to see my sister Melody and go to my cousin, Veronica's wedding. My sister Jennifer and Aunt Margaret also were there visiting.) It was her first one since 2004. They attributed it to her being sick with throwing up the night before the flight because the ct scan and sodium level blood draw was fine. We attributed it to a Phenergan (promethazine) allergy (the ER at St. John Medical gave it to her to stop the throwing up.). She was fine the rest of the vacation.

December 27th, 2007
Tatiana broke her right femur and will be in a spica cast for 6 to 8 weeks. She was brought to St. John's Medical Center in Longview, Washington where they took x-rays and determined she had fractured her right femur. They wrapped her leg to stabilize it. Then she was taken by ambulance to Legacy Emanuel Hospital in Portland, Oregon where her leg was set and cast.

March 2008
Tatiana went in to the ER for more seizures and was put back on a small dose of Keppra.

April 7th - May 15th, 2008
Tatiana went to OHSU ER because she was having diarrhea and was throwing up the night before. There she received an intraosseous infusion (injection directly into the marrow of the bone) in her right leg to get fluids into her because they could not get an IV. She also received an antibiotic called cefatriaxone that she had had many times before. She was then taken to the Pediatric ICU and there she flatlined and had to be given CPR. She was brought back but was not breathing very well on her own. They put in a breathing tube in her to help her breathing out and finally got an IV. They ran some tests on her blood and determined she had an Acute Hemolytic Reaction to the antibiotic. They did a whole blood dialysis and plasmapheresis on her. On April 15th, 2008 they found that she needed an ileostomy because of a bowel perforation and they resected 6-8 inches of her small intestine. She will have to wear a stoma bag over the ileostomy until surgery to reattach it at the end of July 2008.

June 2, 2008
Tatiana's right leg got twisted. Later that day we took Tatiana to the OHSU ER because she was still complaining about it. Tatiana got some x-rays done and they said to treat it like a sprain and sent us home. They then called back on Wednesday to say their radiologist had looked at the x-rays and saw a small spiral fracture on her tibia. We went in that day and got it splinted. On Friday we went to Legacy Good Samaritan Hospital Multi Specialty Clinic where she got a purple cast on her leg. She will be in the cast for about 3 weeks.

July 1, 2008
Tatiana got her cast off.

July 9, 2008
Tatiana went to an endocrine appointment to get blood taken for testing vitamin D and calcium levels. She had an x-ray of her hand to determine her bone age. She also had a bone density scan to determine how brittle her bones are.

September 9, 2008
Tatiana had an Orthopaedics appointment at the Portland Shriners Hospital. They made some Total Contact Ankle Foot Orthotics (AFO) with both an anterior and posterior sleeve for her since she is now sitting better on her own and needs something to get her feet into a better position while in her stander and Hopsa Dress.

September 22, 2008
Tatiana received a free long white cane that I had ordered for her from the National Federation of the Blind's Free Cane Program in the mail today. I ordered the 53 inch one because it is the smallest size they are offering. She will definitely have to grow into it, but I figure then she has plenty of time to learn to walk too.

April 13, 2010
She had been having a icky runny snotty nose for the past 6 months or so. We took her in previously to her pediatrician and they took a sample of the mucous, but didn't find anything relating to infection. About a week before she passed we were given instruction to give her some allergy medication to see if that would clear it up. We didn't see any change except for one day I found blood in the mucous coming out of her nose and blood on her finger and finger nail. I called the doctor and they said it sounded to them like she had scratched the membranes inside her nose that were already sore from being bulbed out and wiped so much and that I shouldn't worry. It stopped bleeding later that same day. Then she started coughing in the morning of the 13th and we called her pediatrician at Doernbecher to make an appointment. They couldn't get her in to see her until 6:30 pm that night. I wasn't worried then because she was acting like her normal perky talkative self that morning. Later on in the day she was having a little bit of labored breathing and some congestion. Her nurse came around 1pm that day and took her sodium levels and listened to her. She said she couldn't tell where the congestion was coming from, but as long as Tati was still coughing she was trying to break up the congestion and that was a good sign and that she was glad that we had made the appointment with her pediatrician. By around 4pm she became less responsive, more lethargic and wasn't trying to cough anymore. We called 911 and the ambulance took her away to St. Johns hospital in Longview, WA. My husband followed shortly after and when he got to the hospital the Chaplin greeted him. The doctors were trying to resuscitate her because she had stopped breathing. She didn't make it. They did an autopsy on her and found she died from severe lobar pneumonia. I think she might have aspirated some of her mucous. We really miss her! :( It was so very sudden that she left us.

Tatiana's Equipment and Gifts from Organizations, Doctors, and Hospitals

A chair made out of foam that Tatiana's therapists made her.

Home from Doernbecher Children's Hospital in Feb. of 2007. She had a NG tube and arm bands so she wouldn't pull it out.

Shortly after she got a new Mic-Key button surgically put in. The g-tube can be unhooked.

(Picture 1) This is her in her bébéPOD (similar to a Bumbo Baby Sitter Seat). (Picture 2) We use this lightbox for light therapy through skin absorption to reset her circadian rhythm in the morning (not being used in this picture). This was donated by my Aunt in Alaska. Also pictured is her Spinoza Bear to listen to music and books on tape from the National Library Service for the Blind (NLS). We received this gift in March of 2005 for her. Tatiana loves Spinoza's soft fur and caressing voice. She also loves to sing with the bear. I am so very thankful to our sponsers from the American Legion Auxiliary and for Ms. Karin Briere, Orlando Memorial Unit 19 for bringing the bear over to our home in Orlando, Florida and making Tatiana feel so special. Thanks also to Dan the Bear doctor for providing her with the visually impaired version of the tape player and promptly sending it through the mail.

Tatiana in her wedge with straps that we built her in 2007 for tummy time. (Click on the link above to see where we got the idea from.)

Tati in her wedge playing with an Animal Rock that makes animal sounds when buttons are pushed. She got this in 2006 along with a Powerlink 3 control unit, 2 Gumball Switches, and a switch activated Classical Stacker with grant money from the Calvin Ranney Craig Wiesberg Children's Foundation in Portland, Oregon.

This is Tatiana's Mulholland Toddler, Peer Level Prone Stander 1. She received this in 2007 from Shriners Hospital in Portland, Oregon. We have adjusted it a bit better for her since these pictures.

This is her Creepster Crawler. She received this with her first grant from the Department of Human Services Fairview Community Housing Trust in Salem, Oregon. With this grant she also received a Little Room and Hopsa Dress from LilliWorks, and the Not-So-Infant Swing from Southpaw Enterprises.

This is her Quickie Zippie pediatric wheelchair with custom seat and Dynaform posture support. We bought this off of Ebay and Shriners Hospital in Portland, Oregon fitted it to her and purchased the extra parts it needed.

This is her Ormesa Birillo Pre-Gait Trainer/Walker (sitting walking frame). I call it a scooter chair. She has the bar to go across and a tray table for it (not pictured here). We received this with a grant in 2007 from Columbia County Mental Health Developmental Disabilities Services in St. Helens, Oregon.

Tatiana received this beautiful quilt from Project Linus while she was in the hospital for her broken femur.

Tatiana received this beautiful quilt from the PICU case worker while she was in the hospital for her ileostomy surgery.

Not pictured or mentioned here is a Low Back Wrap-Around Bath Support, a Dynamic Dolphin activity center, and 2 Big Talk buttons that she recieved from a grant from OHSU Family Support Program in Portland, Oregon in 2007.

Love Quilts made Tatiana a beautiful quilt!

The MP3 playing was made by Songs of Love and sung by Thomas Jones for Tatiana when she was 10 months old.

Lilypie Kids Birthday Ticker

[Crystal's Homepage] [Crystal's Blog] [Tatiana's CaringBridge Website] [Activities For Totally Blind Babies, Toddlers, and Children] [Oregon Parents of Blind Children] [Parents of Totally Blind Children]

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