Hello Everyone

iVillage Member
Registered: 04-05-2003
Hello Everyone
2
Wed, 07-09-2003 - 6:21pm
It's us, Netti and Jenna, checking in. Boy, everyone must be busy this summer as the board has not been very active. We are doing fine I guess. Jenna's therapy has been less in the summer and her PT is on vacation for 3 weeks. I am bummed about that because that is the area that we have been making progress in. We took Jenna for a swallow study and upper GI test last week. It was our last effort in trying to get her to eat. They said she has a safe swallow and that the reason she doesn't eat is a sensory issue. No big surprise to us but how do we change her mind? She doesn't want anything in her mouth and I have been trying every day for 2 years to offer her food, with help from her OT. They told us to back off on making her try food and that if she ever does eat it will be a long, long process measured in years. I really don't think she ever will eat. She is 3 and totally g-tube fed. We had to hold her feeding from midnight on because of the tests and she didn't fuss at all like she was hungry. I don't think she knows she is hungry although I know she knows what a full, satisfied feeling is because that's when she falls asleep. I am coming to terms with the fact that she will always need total care but it is hard, you know...some days are easier than others.

I have had pain in my abdomen for 2 years and it has gotten worse. I went to the Doctor and am scheduled for surgery on July 22. I have had 6 abdominal surgeries and I have so much scar tissue and an abruption in the abdominal wall. He said it will only get worse if we don't fix it. I won't be able to lift for 6 weeks. That's what I am worried about and the reason I have put off going in. My son is 11 and he can lift Jenna so I have to have it done before he goes back to school. Fun summer vacation for him, huh? I have to be careful, though, because if I lift i'll screw it up and really have a mess. So I guess I am feeling down today because the thought of another surgery isn't what I want. But I know I can't go on like this, but how in the world can I not lift for 6 weeks? Jenna weighs about 26 lbs. I know we will get through but it's a big drag. I am thankful though, that Jenna has been stable otherwise I couldn't even consider fixing it.

Well, I hope everyone is doing o.k. and I hope to see more frequent posts from you. Take Care, Netti and Jenna
iVillage Member
Registered: 03-21-2003
In reply to: nettib1
Wed, 07-09-2003 - 7:29pm
Hey Netti,

Sorry to hear that things aren't going well for you all right now.I hope your surgery goes well when you have it.I am sorry to hear that you will have to have another one.Is there anyone else that can help you with Jenna besides your son?Have you checked to see if any relatives or a nurse can help you for a while?I hope things get better for you all soon.

Sorry I haven't been checking in as often as I should,we all have been sick off and on.And there was a death in the family not long ago.And I had sprained my foot and we are going to get things started for my son to get DNA testing and get him tested for Fragile X Syndrom.And going to start school shopping for my daughter she will start school this year.And my grandpa fell a couple of weeks ago and broke his pelvis so I have been trying to keep a eye on my grandma off and on some.And now I am sick again I can hardly talk.Anyways enough with my problems.

(((((((((((((BIG HUGS TO YOU AND JENNA))))))))))))))))))))))


Hugs,

Julie

 

iVillage Member
Registered: 04-05-2003
In reply to: nettib1
Fri, 07-11-2003 - 5:53pm
Hi Julie,

Well it sounds like you are having quite a time, too. Sometimes when it rains it pours. I guess we just have to keep trying our best. I hope you get better soon and have some time for yourself. Thanks for the post...Take care, Netti and Jenna