Thursday, June 21, 2007

Starving Our Child?

My wife and I have been very fortunate in getting our daughter to eat orally and learn to cope with many different food textures. This is a major issue with 1p36 deletion children and many end up need a G-Tube which feeds nutrients via a pump directly into the child's stomach. Thanks to my daughter being willing to eat quite a few foods we've dodged that bullet, but she is still quite thin and frail looking.

In the assessment last week, the Developmental Pediatrican verified with my wife that our daughter's skinny appearance is a result of the syndrome and related feeding issues. She said that she wanted to get that fact recorded in my daughter's medical records for our protection. This seemed kind of strange, but she explained. Sometimes neighbors or acquaintances unfamiliar with a child's health issues will call child and family serices out of concern that parents might be intentionally malnourishing a child.

That little fact stuck in the back of my mind as thought about our neighbors across the street. We don't know them all that well but they are always very kind to my daughter. Every time they see her, they offer her a popsicle or a cookie. In fact more than once they've sent us home with a whole box of cookies for her. I wonder what goes through their mind when they see my little girl. Do they think she's being starved by her parents?

If that's the case, my wife and I have probably even done some things to support that opinion. Last month our neighbors next door held a barbecue that we and several other neighbors attended. My little girl does very poorly with meat textures and eating in an unfamiliar environment. So my wife and I fed her a bunch of things she could handle before we went to the barbecue. When we arrived, my wife and I fixed food for ourselves and let our daughter go play with the other kids. The neighbors across the street were also there and one of them scooped my daughter up, took her inside and fixed her a plate of food and set her down with it encouraging her to eat. They probably figured we weren't going to feed her anything that night.

It's really pretty funny now that I think about it in context with what the doctor said. I'm actually very grateful for these neighbors and their genuine concern for my little girl. There are so many good people who look out for our special little child. I just hope their concern doesn't go too far and end up putting me behind bars for child abuse that never took place! ;-)


Angie said...

After reading this, it definitely brings awareness to this topic for me. Thank you for sharing it. I remember when my second son was born. He had a rather dark area on the lower part of his back and the doctor said he was going to document it just in case someone would think we were abusing him. It's the same kind of thing. We hope Whitney is doing good. Looks like she enjoys chips! What kid doesn't, huh? Wishing health & happiness to you and your family!

Ferg said...

I always worry about being reported when Mollie's behavior issues start up. For some reason she can so months with out much self abusive behavior. Then there are times when she is hurting herself every day. A few months ago she head-butted a window. She had a hard head I guess... she was not hurt but she broke the window. She has the same behaviors at school ( once was escorted out of the cafeteria by 2 sheriff deputies!) so I have plenty of people to back me up if someone reports me :) My husband always kidding around with each other saying if CPS ever took her it wouldn't be long before they were at our door begging us to take her back! No she isn't that bad... we are just trying to make light of a hard situation.

Mollie, 15 years old, -1p36, in CA

Ferg said...

oops.... sorry....i guess i loged in as Mollie's sister ellie when I posted :) (yes... i know it is silly...4 year old ellie has a

Nate said...

Hi Christina,

Glad to hear Mollie is CPS-proof! ;-) I imagine it wouldn't be long before they'd be begging for us to take Whitney back too. Although she does seem to eat better anywhere but home. Maybe we should arrange for them to take her.

I love that your four year old has a blog! She probably has lots of great things to say!