Blogging about life and raising our five kids with Down syndrome.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Saturday, June 27, 2009

Thank you for your support

Thanks everyone. I was pretty much a wreck yesterday, and not really processing anything very well. Still, now that we know what's happening "in there", watching her eat makes my stomach turn. Since she's been this way for quite some time (her last endoscopy 3 years ago showed her esophagus collapsed while laying down, we just didn't know what was happening when she ate!) Dean and I have decided to just keep plugging along until we meet with the doctor next week. (I think it's on Thursday, I forget.)

So, yesterday she woke up stuffy and sneezing green snot. Then by afternoon. She couldn't hear me at all so I knew her ears were full of fluid. I figured Monday I'd get her into the doctor. Then by evening her ear was draining, so she's ruptured her ear drum. Never once did she complain of pain.

This morning she is a CRABBY BEAR with a sinus infection! UGH! So I let her make what she wanted for breakfast. Peanut butter toast. Are you thinking what I'm thinking? How miserable would that be to eat when everything gets stuck???? AND, she's being a PILL, and refused anything to drink with her toast. No amount of begging would get her to change her mind. Finally after several bites, and her patting her chest, she asked for water.

So I'm watching her eat her toast, I remembered back to just a couple years ago when she wouldn't take BITES of things like toast, or sandwiches, or chicken nuggets. Instead preferring to rip off TINY pieces with her fingers, then put those in her mouth. How we spent a YEAR teaching her to take bites, because that's how big kids eat. It puts me in tears to think she was probably doing this because she could swallow those tiny pieces, and SHE knew big pieces go stuck, but had no way to tell us.

Two years. Every two years something blows up around here.

Four years ago, after an innocent fall on our bike, she ended up in the hospital for the entire winter. She had ripped the gortex mesh inside her belly that was holding her abdominal wall together. When she finally came home four months later she still had an open wound, and we kept her bound together with bandages wrapped around her because no tape could touch her skin or her skin would fall off.

Two years ago she woke up one day walking significantly different that she had the day before. Her balance was OFF. We were told she was a walking timebomb for a massive stroke. Then we were told no she's not. Then we were told, "Ok, well we don't really know."

This spring I told my good friend, "Hmmm it's been almost 2 years, I wonder what's around the corner?"

Then she was diagnosed with a siezure disorder. And now this. Ok, well this new thing isn't NEW. I need to keep reminding myself of that. We just KNOW about it now. We've always known she stacks food in her esophagus, we just had no idea how bad it REALLY is. And seeing it on the video screen made me want to grab her from that xray camera and run...run far....and hide with her. I wanted to back up the clock 24 hours so I could continue to not know.

And yet, it could be worse. It could be cancer. It could be something we can't do anything about. Somehow there could be something worse, so I just need to pull up my big girl panties and deal with it. I can do that, until next week when the doctor slaps me back to reality and we have to make decisions. And we have to explain those decisions to Angela. I have to remember, "It could be worse." Next week when we're at the doctor, 100 people should text that to me! LOL

5 comments:

My name is Sarah said...

This is Joyce. I am just catching up here. My goodness what a discovery. Somehow I would have thought Angela would have been having greater difficulty eating and swallowing or much greater pain. I know Sarah can withstand great amounts of pain too and that does scare me. Well at least you are on top of it now. We sure will be thinking of you and hoping this works out without too much pain and agony.

Tamara said...

Well, I'm catching up too, and I just don't know what to say. I'll just be hoping and praying for the best for all of you. Hugs to Angela.

datri said...

Big hugs. I hate having to make those big decisions. You'll be fine, just another Angela thing, right? "It could be worse"

RoverHaus said...

We're so sorry for what you are going through. Our prayers are with you. Hang in there!

JoAnn said...

Oh Leah....how awful! Poor Angela!

I have a friend with Achalasia and sometimes she is absolutely miserable with it...you and Angela are in my prayers!