So Much to Say…

I could say that I haven’t written since November because life has been super busy and that wouldn’t be a lie.  However, if I want to be perfectly honest, I haven’t written because when it comes to Taylor, I just haven’t a lot of good news.

Christmas was hectic because we decided to do this to our house this year.  It was great fun and next year will be even bigger.  Business has been non-stop since August which is the reason we could afford to decorate our house that way.

Taylor had to have another VNS surgery a couple of weeks ago.  At her pre-op appointment, we found out that Taylor only had 1 working vocal chord.  Okay, since we could still hear her sweet voice, it was okay.  The surgeon was worried because of the 2 incisions she had to have, 1 was in her neck and they had to thread new wires in-between her jugular vein and her carotid artery.  Apparently very tricky stuff that required 2 surgeons.

Taylor seemed to come through the surgery better then they thought.  We had planned to spend the night, but they let her come home.  However, her voice is gone.  What you get when she talks is a hoarse whisper.  No more cute Taylor voice.  Her surgeon seems very concerned.

It’s not like Taylor actually talked “real” words but she had a voice.  Now she doesn’t.  I kept trying to tell myself it’s okay because she came through the surgery when they were scared she wouldn’t.  But I think I’m in denial.

I don’t want to only hear this hoarse whisper from now on.  I want her voice back.  We asked if her voice would get better, but it seems the odds are not in our favor.  Furthermore, there could be a breathing issue down the road.

I would probably still not have written here tonight but The Bossman told me I needed to and as usual, he was right.  I can’t keep my head in the sand forever.  I need to just let it go and move on.  At least, right now, she’s home and happy.  That is what’s important…right?

A Great Christmas Present Reaction

While I'm working on my catch-up post, I thought I would send you to The Bossman's YouTube page. I would imbed the video here, but after all the hard work he put into my grandson's Christmas present, he deserves the hits.

So if you would like to see an awesome response to a Christmas Present…just go here. Also check out the shorter-remix version here. Feel free to leave comments if you like. Goodness knows I have an awesome Bossman and he deserves all the kudos in the world.

He's made my grandkids just as much a part of his life as I am and I love him very much.

Taylor & the Train

I know that I need to post an update on Taylor's medical situation but I thought maybe I would just post a video I took of Taylor Saturday night. She has never really been fascinated with all the train stuff going on with The Bossman.

However, this year, he bought a G-gauge train for under the tree. Taylor was fascinated with it. She just lay on the floor with a pillow and blanket watching the train go around and around. We are working on teaching her the sign for train. Of course, it's Taylor, so she has to modify it her own way.

We are watching Taylor a little more closely right now. I knew that her heart valve would cause a problem at some point in her life, I just wasn't expecting it right now. I hate looking at the information online though. When they start explain valve replacement, it is open heart surgery with the breaking of the sternum. Just typing that makes my chest hurt. I hate having to make those decisions. It's not like I can ask her what she would want.

Okay, enough of that. Here's a nice video to leave you with.

Busy, Busy, Busy

I can't believe it's been 10 days since I've written a blog entry. Things have been hectic, but I hadn't realized just how much until tonight. Yesterday was The Bossman's birthday. My daughter and grandkids came over and we surprised him with a cake and some presents.

This past weekend, The Bossman and I took my grandson Gavin to a train club in Corvallis. It was just a Bossman, Nana, & Gavin trip. He is autistic and it really shows in these videos…watch the hand flapping. However, he was so good and he was so excited that I loved every minute of it. Seeing his excitement is contagious and I have to keep watching. I've put Part 1 of the video here in this blog, but if you want, you should check out parts 2 & 3. It was Gavin's turn to take care of the class bear, so that is why my grandson is holding a bear dressed in pink…her name is Miss Katie Bear. All the kids take turns taking her home and they write and put pictures in a journal for the class. It's a cool idea.

Taylor has had a really good week. Tomorrow she has a neurology and a cardiology appointment and then it's off to get some blood work done while they are flushing her port. I wish I could say that the new medicine is helping her seizures, but I haven't noticed any decrease yet. I'm still keeping my fingers crossed.

For the past few days, Taylor has been obsessed with rearranging the canned goods in the kitchen cabinet. She spent 3 hours straight, just standing in the kitchen, pulling all the of the food out of the cabinet, putting it on the counter, and then back in the cabinet. She's done this for 4 days in a row. Normally she'll only do it for a minute or two. I've got some video of her doing it. I'll have to get The Bossman to download it for me. For some reason, my computer doesn't let me edit the movies. I guess I need to get the repair guy on it. *laughs*

Business has been extremely busy. I am definitely not complaining as that is what is allowing us to have such a great Christmas and pay all of our bills. November was our busiest month since opening the business in July of 2008 and December shows no signs of slowing down. We got in 5 computers yesterday alone. People let their anti-virus expire and then load the computer with viruses…bad for them, but good for us.

I hope everyone else is having a great month and that all my friends and their families are staying healthy. I'm so far behind in reading everyone's blogs. I promise I'll catch up soon.

Decking the Halls

I love all the decorations that come with Christmas. We've already got our outside lights put up and the inside is decorated as well. All we need is a tree. Taylor likes looking at all the lights. She also loves anything that lights up and plays music. We have Christmas decoration with Elmo, Cookie Monster, and Oscar the Grouch sitting on a sled. When you squeeze Elmo's hand, they sing and move.

Last Christmas it was a nightmare trying to get Taylor to leave it alone. Every time you turned around, she had grabbed it and ran in her room with it. I'm guessing she remembers that it's for the living room this year because when I got it out, she actually asked if she could take it in her room. When I told her no, she seemed okay with that.

Of course, the first night it was out, she had to come out of her room 10 times to go to the bathroom because she got to walk right past it. She looked at it each time but didn't bother it, so it's an improvement. Today when she came home from school, she made it sing a couple of times and seemed happy with that. We have a little tree and she stuck it on her dresser, so I plugged it in and she fell asleep with it lit up.

We have no idea what we are going to get her for Christmas this year. It's not like she can tell me what she wants and she has all the toys she likes to play with. I think I would like to get her new bedding and redo her room. Maybe I can do that for her for Christmas. We will get the usual things for her stocking…car magazines, bubble bath (can't have a bath without bubbles"), and a few other little things.

I had to reschedule Taylor's cardiology appointment. She had been sick over the weekend and I didn't want to drag her off to the hospital right now. This is proving to be a bad winter for Taylor. Last year was a good one and the one before was a bad one, so I guess we are keeping with the normal pattern.