Gillian Rae Painter
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Hello, I have a nine month old daughter, Gillian Rae, who has a tracheostomy. She has a rare syndrome called Oto-palatal-digital syndrome. She was born profoundly deaf, she has a cleft palate and lip. Her lip has been repaired, her palate has not. Her fingers are somewhat contracted, but she has full use of them and they become more limber as time passes. She has Pierre-Robin type symptoms causing her tongue to partially occlude her airway, this is why she has the tracheostomy. Gillian is fed through a mickey button because she does not swallow properly. We are working on her swallow and many other issues with the Early Intervention team in our state, Oklahoma.
Gillian is oxygen dependant at this point due to frequent pneumonias that damaged her lungs. She is on two monitors at home plus a feeding pump. We are currently working towards bolus feedings. I'm an RN, but I do have a nurse that comes at night and watches Gillian so my husband and I can sleep. This has been a life saver! We had to fight hard for our nurses, so anyone trying to get nurses approved for their child---don't give up with out a fight!
Gillian is a very happy baby, very tolerant and easy to love. I think God give these kids that special quality so they can deal with the medical issues they have to face. She has been such a blessing to me and my family.
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December 28, 1998 - September 23, 2000
Update December 28, 2000
Today is Gillian's birthday. She would have been 2 years old. I just wanted to write and share some memories of her with you on this special day. It's one of my ways of celebrating her life and keeping her memory alive.
First and foremost that you should know about Gillian is she was so happy! And she was also so tolerant of everything that she had to endure. I could always count on a smile from her...sometimes I had to coax it out of her, but I'd always get one. One of Gillian's favorite things for as long as I can remember was having the top of her head rubbed. Sometimes all I had to do was place my hand on top of her head and she would move her head back and forth herself. She also used to bring everything in her hand up to her head for a "test" rub. I guess since she didn't like to have things in her mouth like most babies, she explored them with the Gillian-head-test.
Her favorite all-time toy was her "knotty" doll. Just a couple of rags with the corners tied in knots and attached to a doll head. I got it off of e-toys. We could have been a commercial for e-toys. Have you seen them? The parent sees the child likes something and finds something child-size on e-toys and buys it? I noticed Gillian loved cloth diapers...she liked to hold them and have one with her. So I found this doll on e-toys and she LOVED it. We could have a "Where's Knotty" game with our pictures of Gillian in this last year. Sometimes you could only see a corner of knotty in the picture, but usually if you look close enough you'll find it!
Gillian was deaf and she was learning sign language. Two words she could sign were "more" and "doll". She wasn't too sure exactly what they meant however...she just knew if she signed them she usually got whatever it was she was looking at. She recognized many more signs than that though. Her favorite sign to see was "movie"! She would squeal when I asked her if she wanted to watch one. Winnie the Pooh and Disney's Mulan and Tarzan were her favorites. She would watch the full length video and pay rapt attention the entire time. She would especially get excited when she saw the green FBI warning before the beginning of the movie because she knew the show was about to begin.
Her favorite color was green. She loved chocolate. She always wanted my straw if I had a drink, so I would always get two. She rarely fussed, but as she neared two that was changing! She definitely had an opinion about things! She loved bubbles. Her favorite place to be was in my arms...or in her daddy's while they watched a movie together.
Gillian will always be loved and missed in our home. She taught us more about God's love and what's important in life in her 20 short months than we could have every learned in a our lifetime. She is our bright spirit. Happy Birthday.
Stacy, mom to Gillian, 12/28/98 - 9/23/00
- More Pictures
- Visit Gillian's Page
- Balloon's for Gillian
- My Story to Gillian by Patricia U
- Email Gillian's Mom Stacy Painter
