Taylor vs the Canned Goods

*I think I fixed the video. Let me know.*

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.

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.

Perfection is in the Eyes of the Beholder

To say that I'm not religious would be an understatement. However, I do believe in God. When Taylor was born I was attending the church of her father (my ex-husband now) and it was a fundamentalist, Pentecostal church. While I was going through everything with Taylor, I had several members of the church tell me that I wasn't praying hard enough or didn't have enough faith and that was why Taylor wasn't "made whole & normal". Thankfully, the majority of the people were not like that, but those few are what started my questioning of the whole religious thing.

I came across this poem on someone's blog and saved it awhile ago. Today, I thought I would post it here because regardless of what you believe, I think it touches "something" inside. Yes, it made me cry but then anything like this usually does. Taylor is eternal innocence and I just wanted to share.

"As a small group of political and church leaders look on,

Jesus lifts a mentally handicapped child out of her chair kisses her and sits her on his knee. He dips a crust of bread in wine and feeds it to her, morsel by morsel.

As he does so, Jesus says:"I know what you are thinking. You need a sign. What better one could I give than to make this little one whole and new?

I could do it; but I will not.

I am the Lord and not a conjurer.

I gave this mite a gift I denied all of you -- eternal innocence.

To you she looks imperfect

But to me she is flawless,

Like the bud that dies unopened or the fledgling that falls from the nest to be devoured by ants. She will never offend me, as all of you have done.

She will never pervert or destroy the work of {my} hands.

She is necessary to you.

She will evoke the kindness that will keep you human.

Her infirmity will prompt you to gratitude for your own good fortune...More!

She will remind you that every day I am who I am, that my ways are not your ways and that the smallest dust mote whirled in the darkest space does not fall out of my hand...

I have chosen you.

You have not chosen me.

This little one is my sign to you.

Treasure her!"

Waiting

Today was Taylor's echocardiogram and I will admit to wanting to know how her valve looks. However, I couldn't really tell you why I thought I would find something out today. The Bossman would just laugh and say something sarcastic about my brain…or lack thereof.

Anyway, the technicians never tell you anything. I think they take a class specifically on how to not change their demeanor no matter what they see. I now have to wait 10 days until Taylor sees her cardiologist on the 30^th.

I think I'm just a little anxious because there are some changes going on with Taylor that no one can seem to come up with a reason for. She has some discolorations of her fingers and toes but Taylor doesn't have great circulation to begin with so it could be totally unrelated to her heart. Her left foot has been swollen for over a year and no one can figure out why. At first they thought gout. Gout? In an 18 year old…obviously that wasn't it. They've take x-rays and now the swelling is moving up past her ankle. She takes her shoes off the minute she gets home. I've been lucky enough to have a couple of pair of low-top converse for her…they seem to stretch.

I have no clue if all these other symptoms going on have anything to do with her heart. I honestly hope they aren't. Of course, that means starting from scratch to see what else is going on. Part of me wonders if it even matters anymore. If it's a matter of life and death, absolutely I'll make the decisions that need to be made. I just don't want to put her through things that won't help.

Taylor is a very happy, affectionate, loving, "little girl". I want her to spend her time doing those things that she enjoys…that's what gives Taylor her good quality of life.

So now the 10 wait commences. Thanks to all my friends for their good thoughts today.

Frustration

The word for the day is…FRUSTRATION. I sent Taylor to school today because she has been fever free for over 24 hours. Well, I got a call from the school nurse at noon saying I needed to come get Taylor because she had a temperature of 100.3. Taylor's teacher and I both tried to explain to the nurse that the new seizure medicine Taylor has started has a side effect of increased temperature. Also, Taylor can't regulate her body temperature because of her brain defect. This is documented by a doctor in her school file.

However, the fever nazi didn't want to listen to any of that. I even sent the print out from the pharmacy listing the side effects of the drug. The teacher tried to explain to the nurse that they can tell when Taylor is sick by her actions and she was not acting sick in any way, shape, or form. Taylor did not want to come home. She loves school. Besides, I had her 3 year evaluation meeting at the school anyway, so I had to bring her back with me. She had 25+ seizures in 30 minutes this morning as well, so that was just one more thing for the nurse to latch on to though her teachers are very good at dealing with Taylor when she has bad seizure days. I love her teacher and the aides…they rock!

It's always fun when Taylor is evaluated by the psychologist. It's so anti-climactic. Taylor is still a tardy…what a surprise. Okay, I realize that sounds awful but honestly, sometimes you just wonder where common sense is. Taylor can't take an IQ test. She only has 9 words in her whole vocabulary and maybe 10 signs. I don't need it in writing that my child has a lower IQ than 99% of the people her age.

Some of the things they write are funny. I love this line from Taylor's evaluation…"She knows several signs receptively and signs the word "bathroom" when she needs to use the restroom, but also seems to use the sign when she wants to escape an activity." That is just too funny to me. Sometimes these evaluations can make me a little down, but for the most part, I've gotten past that.

It's trying to figure out what Taylor will be able to do after she "graduates" from school that is frustrating. She is such a social butterfly and not going to school every day is going to be rough for her. She is also too delayed to get a job. I do think we've found a program for her that will meet her needs for 2 – 3 days a week, a couple of hours a day. I still have until June to figure it out.