As promised, here is the video of Taylor and her canned goods sorting fun. I have no clue what it is about this that she loves, but goodness knows, I'm not going to keep her from doing it. I just need to make sure there are no glass objects in the cupboard. Seizures and glass don't mix. I learned that after this video was taped.
As you can see, Taylor isn't happy that I'm "annoying" her with my presence. She does tell me to leave. Please pardon all my talking on this video…it sounds funny to me. Also, since I have no editing capabilities…please ignore my extreme close up at the end. I promise I do look a little better in real life than that video show.
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.
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.
I am the mother of a daughter with Trisomy 9p & Lennox-Gastaut seizure disorder. There is a lot to deal with when you have a special needs child & I thought it would be a good idea to share my travels here.
