Today's Topic:
Tell your story. Educate others about what life is like with a feeding tube and with your child’s/family member’s/your medical condition. Why does your child/Why do you have a tube?
Life with a child with a feeding tube is not a bad life like some might think, its just different. At first it was scary, nerve racking, hard, and hard to talk about. Now it can still be all of those things just in a different way. When Chloe was 2 months old and the doctors told us Chloe would have to have a feeding tube it was hard to accept. I thought how will we ever be a normal family and go out and do normal things and what will people think or say about her feeding tube and how will Chloe react to not eating by mouth? Will she feel deprived of food or mad/sad/ angry that we are all eating and she is not? Now, it is a completely different story. Now I have accepted it to the fullest. I mean yes of course I would like for her to one day eat by mouth but she will get there in her own time and if not then it is what it is. It is still scary and nerve racking because I am just worried of it getting pulled out as it has been a few times but it happens and she is okay. She actually laughs when it happens. Chloe's feeding tube is apart of Chloe and anything that is apart of Chloe I love. We are not a normal family and never will be. We will always be a special needs family and are ok with that. We were given this life because we were meant to have it. What is a normal family anyway? and we do get to do normal things, we just do it in a different way. And as for what others might say or think, that really is not important at all and wouldn't bother me the least bit if you didn't approve. Chloe was so young when she got her tube that she doesn't know anything else so it doesn't bother her at all.
It is tough sometimes to feed her when we are out doing things but we manage and have figured out what works best for us. Plus she gets to wear a pretty cool backpack while she eats, now that she is big enough to hold it. I just try to embrace it as much as possible.
So Chloe has 19.3 micro deletion (a tiny little piece of her 19th chromosome is missing). So with this it causes her low muscle tone, which then was the cause to her aspiration, which is why she has the feeding tube. As of May of 2012 she was cleared to eat again, so she was no longer aspirating while drinking/ eating but since she had gone so long without eating by mouth she no longer is accepting of it. She is very sensitive when it come to other people putting any type of object, such as a spoon or food into her mouth. It probably doesn't help that she is teething right now to. So it is a long on going process to try to feed her food by mouth. This syndrome also causes her to have alot of upper respiratory issues and she has sleep apnea so at night she usually needs some oxygen to keep her saturation's up. Because of her low muscle tone she has to work ALOT harder then most children to do very simple things that cause naturally to others.
Okay so that was a pretty long answer to todays topic. They probably wont all be this long.
Check in for the rest of the week to ready about the other topics.
HAPPY FEEDING TUBE AWARENESS WEEK!!!!
This is Chloe when she was only 2 months old when she first got her NG tube. She had her NG tube for about 8 months before she got her Gtube.
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