Monday, December 22, 2008


I began this blog, officially, almost 2 years ago now. My first entry was just a little "I'll give this a try" kind of thing. Then I didn't touch it for months. My next entry was when I found an outlet for the turmoil that often goes with special needs decision making. It was my attempt to sort and deal with my struggle in deciding to go ahead with Ben's Nissen Fundoplication. Today I scheduled Ben's surgery for a re-do Nissen Fundoplication. Notice how I haven't linked to it? I don't want you to feel compelled to follow a link and read about how much this will suck for Ben. Search away if you like but be warned, when I say it sucks, I mean it. After his hospital stay and doctor follow up we were really hoping to be one of those cases that are free and clear for years. We are, or rather Ben is not free and clear by any means. We are officially symptomatic (no appetite, refusal to eat, vomit, abruptly stopping eating due to pain, vomit, weight loss, complaints of gas pain, complaints of stomach pain, more vomit, weakness and lethargy, hiccups that make him sick, mama it hurts when I eat, can you make my tummy stop hurting, please don't make me eat...). So here we are again. I'm sad. Really sad for him. I hate that I am saying "go ahead and do it again". I hated it the first time and hate it just as much now. I am not only sad, I'm angry. Hy heart hurts and then for good measure lets add some guilt. I hate this...


Billie said...

Damn. I am so sorry that you, and Ben, have to go through this again. Just to say that I am wishing you guys all the best for smooth sailing this time around makes it sound so trivial. But I really am.

Ellen said...

Hi. I am also so sorry. We do what you have to do for our kids, and it is so torturous, I know. He is lucky to have you as a mom. I hope this surgery helps, I hope you are able to enjoy the holidays.

Heike said...

Oh my, poor little man. And poor mamma. And i know about the guilt bit - but try not to. Just keep trying.

You know, it occurred to me today that if we link our Wii's to the internet our boys could play against each other. Never mind the geographical difference. They could play against someone their own skills level.

So, let's make a date after the surgery. When will it happen?

Dianne said...

It's never fun having to make these sorts of decisions :-(. I am sorry you've had to go down that path again.

I hope that the second time around it is NOT as bad as the first.
Wishing you all the best,

Jen said...

Hi, I just did a search and discovered that I'm on your blog list! Very cool - thanks for reading my blog, but why no comments? I love getting to know who is reading. Anyway, your children are beautiful, and I'm so sorry that you have to make these kinds of decisions. Being a parent is SO hard!

The Hull Munchkins said...

Hi, I just found your blog through another preemie blog I look at. Sounds like your family is still dealing with heavy issues even though Ben is 6.

My attention was grabbed when I read the part about the repeat Nissen Fundo for Ben. Our dd is 5 and on J-feeds b/c of terrible reflux. (fmr 23 wkr) We considered doing a redo this past fall. Her tests were inconclusive and since she is nonverbal, it's all subjective "mommy" observations.

It is so hard. I just wanted to write and tell you I'll be praying for Ben. I hope this surgery can help him and get him eating again.

ps. I read about your dog having seizures (old post). We also had a golden who started seizing right about the time our dd was in the hospital for seizures. Can it get any more weird?