srmina
Community Host of Special Sentiments, Tube Feeding Issues, and Motility Disorders

Basic Member Information and more...

Type of Member

Parent

Occupation

Editor, Complex Child Magazine

Location

Chicago

Facebook Page

http://www.facebook.com/profile.php?id=531248338&ref=profile

Information about your Parent-2-Parent Membership

Supporter Title

DDiamond

You can list some of your interests, hobbies, favorites (i.e. music and movies etc.).

My interests include...

My kids, animals, vegetarian cooking, reading, and writing.

Favorite Music

Classical

Favorite TV Shows

House

You can list details about your child/ren here.

Children's Names and Birthdays

Karuna 7/6/2003
Sameer 3/4/2005
Neena 7/20/09

Child's Background

Karuna is my little miracle! She is 5.5 years old and just a delight. She has spastic quadriplegic cerebral palsy secondary to hypoxic ischemic encephalopathy from a ruptured umbilical cord and resultant hemorrhage in utero. She cannot hold her head up, sit, stand, or walk. She also has seizures and is visually impaired.

Karuna is also thought to have an undiagnosed syndrome, perhaps autoimmune, that began shortly before her third birthday. As a result of this syndrome, Karuna has pancreatitis, inflammatory bowel disease with multiple abscesses and fistulae, dysautonomia, dysmotility and pseudo-obstruction, respiratory issues, urology issues, and hematology issues.

Karuna has a GJ tube that she uses just for meds. She has a central line (Broviac) and receives TPN and lipids for all of her nutrition. She also caths and uses a foley at night. She is on Oxygen at night.

Child's Background

Sameer is just about 5, and a total wild man. He is very bright and absolutely loves preschool! His favorite things include Curious George, reading books, building things with blocks, and anything having to do with cars, trains, or trucks.

Samee is very healthy, but does have mild persistent asthma, food and environmental allergies, and chronic eczema.

Child's Background

Neena was born July 20, 2009. Guess what? She has horribly reflux too. She also appears to be a wheezer. She is a smiley happy kid most of the time, and quite a character.