Long Overdue

First, I want to thank everyone for all their kind words and support.  They meant the world to me.  I don’t know why I seem so averse to updating this blog.  I need to get back to regular blogging.

Yes, things have been busy but I need to make the time…at least for my emotional health.

Taylor is doing very well.  She has some issues, but then she’s always had at least one issue all the time, so it’s nothing big.  She is still her smiley, happy self.

Since her sister got married and moved back to GA…see, it has been awhile.  I’ll have to post pictures.  Taylor & I walked her down the aisle.  She married a wonderful Army MP when he came back from Korea in May.  They had 21 days here before they had to pack up and move to Ft. Stewart, GA.  He’s scheduled to deploy to Afghanistan this coming January.

I promise I’ll go back to writing regularly.  If not, Jaime can bug me. *laughs*  I will leave you with a video of our 4th of July light show.  Yes, The Bossman loves his lights.  Wait until you see video of this coming Christmas.  Visit our Vimeo site if you want to see the rest of the songs.

Summertime Medley - 4th of July Show 2011 from Cascade Christmas Lights on Vimeo.

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?

Overdue Taylor Update

It's been a long time since I've blogged here. I can't really give a reason why. I've started several blogs but never seemed to finish them. Maybe I'm practicing a subconscious form of avoidance.

Last week the school kept calling me and telling me that Taylor was running a temperature. It would start off around 100. They would call me an hour or two later and say it's 100.4 and I needed to come and get her. Anything over 100 requires her to leave school.

Of course, Taylor didn't want to come home, she loves school. This is her last year and I want her to get every possible day she can in. On Thursday when they called, I drove over to the school, signed her out, and then went to her class. The teacher said, "look, Taylor isn't acting sick and we know she has a problem regulating her body temperature so she can stay if you're all right with it". Well, that works for me. I told them to stop taking her temperature unless she is acting sick. *laughs*

Taylor was sick a few weeks ago with pneumonia again. I was telling "The Bossman" that Taylor was sick and he looked and me and said, "you know she isn't "sick" really, it's more like she just isn't doing well anymore". Well naturally I started to cry. He's right, but I keep telling myself that she is sick because that implies that she can get better and we all know that isn't going to happen.

She's happy and I guess that is the most important thing. She's stubborn and a fighter so she just keeps chugging along, doing the things that give her joy. She just keeps smiling through it all.

She has a 3 hour test coming up next week because of the poor circulation on the left side of her body. They need to figure out what's going on there. They have a hard time getting a blood pressure on her left side and her left foot and ankle stay swollen all the time. I'm hoping it's just another case of "Tayloritis" (anything that stumps the doctors is called Tayloritis). Sometimes I much prefer that than something serious…if that makes sense.

What’s Been Going On

I guess it's time to update my blog and all my friends on what's been going on. I know I've been MIA lately. Everyone knows that The Bossman's mom passed away. I appreciate all your kind thoughts as does The Bossman. It meant a great deal to him.

The week after the funeral, I had to go to school and pick up Taylor. Of course she had a fever. It was 101 by the time I got there. She was also coughing a great deal. Now, when she left for school that morning, I hadn't heard a single sniffle, cough, or sneeze. I took her straight from school to the doctor. How can someone go from fine one minute to full blown pneumonia the next? I don't know why I act surprised, it's Taylor. That's what she does. Okay, I can handle taking care of Taylor, working, and trying to help The Bossman any way I can with his grief. I always wish I could say something profound that helps but all I can do is be there when he needs me to lean on.

However, 2 days after Taylor got sick, my throat started to hurt. Then my lymph nodes swelled up and my temperature spiked to 103. Yeah, just what I needed. The Bossman promptly (even though I didn't want to go, I don't argue with The Bossman) sent me off to Urgent Care. Sometimes it's annoying when he's right. I was thinking just a bad cold or something. Nope…I also had pneumonia complicated by my asthma and a viral infection of the throat. I can't remember the last time I was that sick. I just could not function. But we all know as mom's, we have to. The Bossman took care of the business…and wouldn't you just know that that week we got so many computers in, it was crazy.

I would feed and medicate Taylor, she would lay in her bed watching TV and looking at her car magazines and I would drag my body back to the couch. Of course, having a business out of your house means you can't be lying around sick in your pajamas so I had to lie around completely dressed. Not fun when your temperature goes up to 104. I had no voice so all I could do is gesture or write. The Bossman thought that was kind of fun because at night when we were watching TV, he'd talk to me and all I could was nod or smile. He said that was nice since he could say anything he wanted without any rebuttals from the peanut gallery.

Things are finally back to our normal. Taylor is back at school and so far so good…no calls. I am feeling almost 100%. I still have a lingering cough but with my asthma, that's normal. Now I'm just letting The Bossman sleep in while I take care of the office. He said we work in shifts. I have the early shift then he gets up and works until 2am. We are still busy as hell. There are so many computers in the shop right now that I've run out of room in our normal holding area…and it's big. In this economy though, we are doing very well and I am very thankful for that. People will come up with the money to fix their computers. I think sometimes they'll forgo food just so they can get on FaceBook, MySpace, or play WOW. Hey works for me. *laughs*

Hopefully I'll be able to catch up with everyone. I've started trying to leave comments on blogs. Bear with me as it might take me a bit.

*hugs to all my friends…I've missed you*

Sharing More of My Life

It's been awhile since I updated. Things here have been a bit hectic. Thankfully Taylor is doing much better and she has been fever free for almost 24 hours. If she stays fever free that means school tomorrow!!!

Most of my friends know that The Bossman (my BF) and I run a business from our home. He's been doing computer repair in our town for many years, just for another company. We recently celebrated out 1 year in business anniversary this past July. It is a very successful business and I love working with him. I am definitely learning to get my geek on.

Anyway, yesterday was "totally weird customer" day. Most of our customers know The Bossman because he also teaches computer classes at the local community college. However, we do get our share of customers that just walk in off the street. Some of them defy description. They bring in computers that are running Windows operating systems from the early 90s. They get really upset when we tell them that Windows doesn't support Windows 3.1 anymore.

I thought this post should be a little more about my daily life instead of just all the bad news about Taylor. While this blog will still focus on life with Taylor, I just decided to start sharing a little bit more of my day to day life.

Quick Update

I just wanted to do a quick update. We got to the hospital before it was light out (6am) which is way too freakin' early. They started the IV in her port but don't even get me started on why a port that can't handle the fluids of surgery and tests was put in. At least the anesthesiologist knows Taylor so he doesn't mind sedating her with the port and then starting a bigger IV after she's asleep in the OR.

They were able to move the VNS without major issues and she was out of surgery after 2 hours. Taylor's doctor is really good about staying on top of her pain because he said that is going to be one of her major issues right now along with avoiding any post-op infections.

Taylor is lying in her bed, flipping the TV channels, drugged to the hilt. She is supposed to rest for the next few days but keeping her down is a hard thing. Right now, it isn't an issue because I think this pain is bad for her. Normally she has a high pain tolerance. If she just lays around, she must be hurting.

I took some pics and I will post them later.