Tuesday, December 15, 2009

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.



Monday, December 14, 2009

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.



video

Thursday, December 10, 2009

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.


Monday, November 30, 2009

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.


Tuesday, November 24, 2009

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!"



Thursday, November 19, 2009

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 30th.

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.


Tuesday, November 17, 2009

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.


Monday, November 16, 2009

Gum…The New Asthma Medicine.

Has it only been 3 days since I last posted? It feels like a month. Today has been the first day Taylor has been fever free, so it looks like she will be able to go back to school tomorrow. It's been a rough week. Taylor just doesn't do well when she is sick. She doesn't understand taking it easy and she would rather go to school, sick or not.

The Bossman has been sick for over a week as well and I thought it was going to bypass me, but apparently not. I have really bad asthma and last night at around 10 or so, I could feel one coming on. I did the inhaler & nebulizer stuff but it just wasn't helping. Once I start coughing, I can't seem to stop. I have been hospitalized several times for my asthma. I usually have a good experience as far as any ER experience can be good.

However last night was not a good experience. I actually had the doctor tell me to try chewing gum to stop coughing. Yes, really…gum. We got the wheezing under control by several nebulizer treatments using a stronger medicine than I have at home. As far as my coughing goes, not so much. I have Delsym at home and sometimes it will help but not so much last night. In case you didn't know, Delsym is an over the counter cough syrup consisting of nothing other than dextromethrophan …you know…the same stuff in Robitussin. The only difference is that the Delsym is in a suspension form. It's supposed to make it last longer. Now this doctor tried to tell me that Delsym is a narcotic. Seriously? What narcotic can you buy over the counter at Wal-Mart. When I mentioned it's an otc, he said, "well, it tricks your brain into thinking it's a narcotic". Yeah, okay…whatever. I swear, he made me feel like I was a drug-seeking fiend. All I wanted was to stop coughing. Every nurse that came in the room kept telling me that my cough was making their chest hurt. Imagine how it made mine.

I suppose I'm done ranting. I'm feeling like crap today, but I'm hoping it's a quickie sickness and not some drawn out flu or anything. I don't have time for that. Taylor has her echocardiogram on Thursday and then her cardiology appointment in 2 weeks. Hopefully her aortic stenosis will not have advanced any farther. I am just not ready to be making valve replacement surgery decisions.

I have many blogs to catch up on and hopefully my internet friends will understand my absence. I have just been too busy and/or tired to sit at the computer any longer than I have to. Right now, I'm enjoying listening to this wild wind that is blowing outside. We've had gusts up to 25 – 30 miles per hour. I love the wind, so I'm going to go snuggle on the couch, watch TV and listen to the wind.


Friday, November 13, 2009

Yes I Did…Just Have a Pity Party



It's time for "Yes I Did Friday". This is the brainchild of Jeanette, so make sure you head over to her blog and link up.


Yes it is 2am on Friday morning and I'm sitting up because I'm scared to go to sleep. Taylor's fever is 103.5 right now and she is very "out of it". I know she is the one that is sick. She is the one that has to deal with feeling bad, but right now, I'm just very tired.


Yes I am having a moment of feeling sorry for myself. At least that's what I think I'm feeling. Right now, at this very moment, I wish I had a "normal" child. I wish I had a child who could tell me exactly how she is feeling. I wish I had a child that didn't have seizures. I wish I could trade the worries I have right now with the worries of…is she passing her college classes, do I like the boy she is dating, is she practicing safe sex.


My "Yes I Did Friday" post is just one big old poor me post and I apologize ahead of time to everyone. Maybe it's the lateness of the hour, or earliness depending on your perspective. Maybe it's that I'm tired and I just wanted to sleep in my own bed and not the lumpy couch that always sucks my butt in between the 2 cushions, forcing me into a V shape.


Yes I Did force you, my fellow readers to participate in my surprise pity party. Awww…screw it. I'm done already. I've given Taylor some medicine and I'm going to go do some mindless infomercial surfing, unless I get lucky and find an interesting show to watch in the middle of the Snuggie and Obama Chia Pet commercials.


Thank you for letting me vent and get it all out of my system. I promise I only have moments of self pity and I try to make them few and far between.


I think I need an AP & Nikki B intervention! They make me laugh.




Tuesday, November 10, 2009

Conundrum, Thy Name is Taylor

Taylor after her PICC line placement (before the port)

I'm going to whine for a few minutes. Well, maybe it isn't whining as much as it is complaining. Yesterday was a rough seizure day for Taylor. Okay, I can handle that. That is nothing new for us. A good seizure day is less than 50 a day, so seizure free isn't in our vocabulary.

Anyway, Taylor wakes up at 3 am coughing with a temperature of 101.5. Fine…I can tell this is going to be a rough winter. Taylor alternates. We have good winters and bad ones. This is shaping up to be a rough one. I'm assuming it can't be the flu because we've already been there, done that a few months ago.

I take her to the doctor and he says…she has the flu. What? I mention that he diagnosed her with the H1N1 flu back in September. Now, don't get me wrong, I love our doctor. He does the best he can with Taylor and that's all I can ask for. The Trisomy 9p throws most of the doctors off. However, I'm expecting him to come up with something other than the flu…a cold maybe? He says to me, well, she either had the flu back in September and she doesn't now or she has the flu now and she didn't back in September. Yeah…I'm guessing your faces are probably looking like mine did.

We are treating her for the flu again. But guess what? The insurance won't pay for the Tamiflu because she's already had the flu and so she shouldn't need Tamilflu again. Whatever. I'm just going to treat her symptoms and see if she gets better. If she doesn't, then we'll know she needs something else.

On a side note, Taylor was born with a heart defect. She had a VSD but luckily it closed on its own when she was 6 months old. She also has a bicuspid aortic valve with aortic stenosis. Now this defect ended up being the least of her issues but as she has gotten older it's starting to cause some problems. Her doctor did notice her fingertips were a little blue and her lips were not pink…but they weren't blue either. They were sort of in-between.

I told the doctor that she has an echo cardiogram in a couple of weeks and she sees the cardiologist on November 30th. To be honest, the doctors told us that Taylor wouldn't live long enough for her heart valve to become an issue. Well…she decided to prove them wrong and now that she is 20, it looks like a valve replacement will be in her future…again, if she hangs around for awhile longer.

Taylor is stubborn and she is having way too much fun in her life and I can just see her giving the finger to all those doctors that tried to write her off. I sometimes think she wishes she could just say a big "F**K YOU" to all those people that said she would never see her 1st birthday. I love that girl more than I could ever find the words for.


Monday, November 9, 2009

Sometimes…& Seizures Suck!



I got my first blog award. Thanks Jennifer. I know that I blog as a way to vent and I do hope that what I write can be of help to others but I will admit that there is also a part of me that likes it when I know people are reading my blog. I like to get comments. While that isn't the sole purpose of blogging, I would be lying if I said I could care less whether anyone comments…I do.


Today has been a rough day here. Taylor has been on the new seizure med Banzel since Thursday night. I know that it hasn't had a chance to build up in her system but I sure hope it will hurry up and help. The school called today and I had to go pick Taylor up. She was seizing too much for them to handle. Taylor had over 40 seizures in 20 minutes. The teacher/aides are very good about writing down every seizure and the time and the poor lady was carrying around a piece of paper trying to keep track.


She came home and has been seizing like crazy. She's had some serious drop seizures. There's a second nature to Taylor. I think she has an aura or something because she'll be standing there and then all of a sudden reach for the wall/chair/person…whatever she can grab to hold on to a second before she would have fallen due to a seizure.


Probably 3 – 4 years ago, I would have packed her off to the ER for IV Ativan to try and slow down her seizure activity. Now, I just don't see the need. Her seizures are uncontrolled…I know that. I just don't want to fill up her time with short acting medicines and needles (even if she does have a port).


Sometimes I feel like I've given up on her. Sometimes I second guess my decisions and wonder if I'm doing what's best for her. I hate those feelings. I feel that I'm making the best decisions I know how to make for Taylor but I guess only time will tell if I've chosen correctly or wisely.


There are no absolutes when it comes to treatment for Taylor. I just know she is much happier throwing her toys into the bathtub than she would be, in the hospital, hooked up to an IV being pumped full of a barbiturate.



The rules state that I get to pass this along to 15 other newly discovered blogs that I love. Should any of you choose to accept this mission…post it on your blog together with the name of the person who has granted the award, and his or her blog link. Pass the award to 15 other blogs that you’ve newly discovered. Remember to contact the blogger to let them know they have been chosen for this award. I don’t have 15 blogs to pass it on to, but I am going to pick those blogs that I think rock! Please check them out, they are great reads.
1. Blogzilly
2. ConlonClan
3. Model Trains – A Hobby Revisited
4. Lila’s Miracle Life
5. The Bates Motel
6. Rissa Roo & Her Family Too
7. Lia Joy
8. Paisley Place
9. Alabama Slacker Mama
10. Anemone Pie
11. Colton’s Journey




Sunday, November 8, 2009

A Tale of 2 Berlins


I couldn't sleep tonight, so I started watching a documentary about the Berlin Wall. Watching it brought back an interesting memory. It's funny now to look back at but I can assure you, at the time, it was anything but funny.

I grew up an Army brat. I was actually born in Stuttgart, Germany. We came back to the states when I was less than a year old. That was 1963. Thirteen years later, my dad was once again stationed in Germany. This time, we were in Heidelberg. My dad was part of the 207th Aviation Company. He was an Army pilot.

I loved being in Germany as a teenager. We traveled all over Europe. We went to England, France, Belgium, Italy, Switzerland, Austria, and even the tiny country of Liechtenstein. Since I've already dated myself, I can share that when I was living in Heidelberg, Germany was divided in 2. We decided to take a family trip to Berlin. Now if you know your history, you know that Berlin was divided in 2 and the entire city was located in the middle of East Germany.

To get there, we had to get special passports and rode what was called the troop train. Once we passed from the West into the East, we had to stop at every station for the East German or Russian soldiers to board the train and check our passports. They also had mirrors on long poles that they would slide under the train to see if anyone was holding on to the bottom of the train, trying to escape to the West. My brother and I had our own little room on the train because this was an overnight ride. It was great fun.

So, we get to Berlin. It was my dad, mom, a close family friend we always called Uncle Dave, my brother, and me. Uncle Dave wanted to go into East Berlin. Because of my dad's job, he wasn't allowed to go, so he and my brother spent the day at the Berlin Zoo. That left Uncle Dave, my mom, and me to go into East Berlin.

Something to know about is the money exchange. In West Berlin, you could get 4 East German marks for 1 West German mark while it was 1 for 1 in East Germany. Keep in mind; you weren't supposed to bring any money across the border. You were supposed to exchange it once you crossed into the East. However, I guess we wanted to be greedy and have more money to spend. Now you have to remember that I was only 14 years old and this was 1977 when 14 was still a child.

We exchange the money and I put it in the bottom of my sock and slip my shoes on. We head through Check Point Charlie. Once we get to the East German side, we walk into a building and my face turns completely white. In this building are several dressing rooms. I've now become terrified that I am going to be strip searched, they are going to find the money in my shoe, and I'm going to be carted off to a Russian prison. My mother grabs my hand because I'm starting to hyperventilate. The reality is that these used to be dressing rooms from back in the late 40's early 50's. I let out a huge sigh.

There are some interesting stories that I would love to share from inside East Germany, but this post is getting long, so I'll have to do a part II to this story. Needless to say we didn't want to smuggle the money back through and the only thing we could do with it is eat because anything we bought would have to match up with the exchange receipts we supposedly had from the East German bank. Yeah, that isn't as easy to do as it seems. We ended up tipping the bathroom attendant lady insane amounts.

When it was time for us to come back to West Berlin, we went through the building, handing each East German soldier at various windows our passports. Uncle Dave handed a soldier his passport, the soldier looked at it then sent him out of the building back towards Check Point Charlie. My mother went next but she stopped at the door, waiting for me. The soldier took my passport, but he wouldn't give it back. He put it to the side and started fiddling with his stool. My mother is still standing there and the soldier notices her and tells her she has to leave. She tries to explain to him that I am her daughter and she is waiting on me. He just says, "No you must go".

I get scared and start to tear up, thinking the soldier has just misunderstood. The soldier, my mom, and I were the only ones in the building. He walks out from behind the counter and "gently" pushes my mother out the door. That leaves me in there alone with him. He goes back around and starts working on his stool. I have no clue what was wrong with it, but he had it upside down, checking the legs and other stuff. By this time, I have definite tears rolling down my cheeks. I'm petrified, wondering what in the hell could possibly be going on. After about 20 minutes, which seemed like hours, a Russian soldier walks in, says something to the East German soldier. It didn't sound very nice. So they hand me my passport, the Russian soldier smiles at me, grabs my hand, and walks me out the door and up to the American soldiers at the check point. My mother is almost in hysterics by this time. She keeps asking me what happened. All I can tell her is "nothing".

At the time, I thought I was going to be traumatized for the rest of my life by that experience. In reality, it's become a really neat story to tell but you could never have convinced me of that back then. According to my dad, he found out that the East German soldiers just liked to harass American tourists and it was just my turn.

I hope you enjoyed my little story and I'm sorry that it turned out to be so long. I'll have to share the rest of it sometime.


Thursday, November 5, 2009

Writing Her Own Pages


Today was Taylor's appointment with the neurologist. That's nothing new. We've gone through 15 neurologists in 20 years. Only 2 of them were because we didn't like them. One of the ones that we kicked to the curb had the gall to tell me that at 5'7'' and 105 lbs, Taylor needed to lose weight. I think I stood there for a few minutes dumbfounded. What the hell? I'll have to share that story sometime.

We decided to start Taylor on the new seizure drug Banzel (rufinamide). This will be on top of the other 3 drugs she takes: Keppra, Zonisamide, & Clonopin. This drug was specifically made for the condition Taylor has, Lennox-Gastaut. She has started having drop seizures again and I'm hoping to stop those. The absence & complex partial seizures are bad enough without adding those. Before her brain surgery, the drop seizures caused a broken leg, several broken noses, a huge blood clot in her butt from falling backwards that had to be surgically(350cc's of blood removed + a drain for 7 days) removed, and other countless bruises and scrapes.

I was talking to the neuro today about Taylor losing some of her milestones. She is a sweet women and an awesome doctor. She genuinely loves Taylor. Anyway, she was telling me that for some MRDD patients, she thinks that it was just their time to lose some abilities…especially when she can't pinpoint another reason. However, with Taylor, she knows for sure that it's the seizures that are causing her to regress.

She said to me, "Taylor is living on precious time & she is writing her own pages". That sentence touched my heart. The combination of Taylor's medical issues is unique. The Trisomy 9p is rare not to mention that she was born with unrelated birth defects involving her brain, kidneys, & stomach. So yes, Taylor is writing her own pages in a medical journal, but I think there can be so much more to that statement.

Taylor is writing her own pages in this world. She is leaving her mark in her family's hearts & I haven't met many people who aren't touched by Taylor's sweetness. I do know that Taylor is living on precious (borrowed) time. Having the neurologist say it does make my heart skip a beat but I'm not going to start paddling down that river of denial now. I know that nothing will ever prepare me for the loss of my Taytiebug. I'm just going to enjoy each & every day of her precious time here on earth & keep hoping that she has much more precious time with us.



Monday, November 2, 2009

Sanitizing Police, Taylor, a Cow, & a Seizure

Today was Taylor's port flush. She has it down at the infusion center in our local hospital. With the H1N1 flu going around, they have instituted some severe restrictions when entering the hospital.

No one under the age of 12 is allowed in the hospital at all unless they are the one being treated or tested. No one under the age of 18 is allowed in the Maternity area. When you enter the doors of the hospital, you are greeted by the "Sanitizing Police". (Please note my restraint in not calling them "Sanitizing Nazis".) You are required to hold your hands out for them to squirt sanitizing foam into.

Because Taylor was the "patient", I had to wear a name tag with the date of the visit written on it. Now, I'm not knocking these precautions in any way. I understand in keeping people as unaffected by this flu virus as possible. It was just a sudden shift as I was just at the hospital a few days ago.

The Bossman was nice enough to download my Halloween videos off of the camera and so I'm going to share one of Taylor, the cow, and a seizure. I missed the beginning of the seizure, but I think I caught enough of the one we call "the elvis" to give you an idea. She can have as many as a few hundred+ of these a day. It's funny how as soon as the seizure is done, she "says" something. We may not know what she is saying, but it's definitely something. The Bossman wonders if it is actually part of the seizure itself or if it's a coping mechanism for her.


video

Friday, October 30, 2009

Refusing to be Politically Correct About Disablities



I've been meaning to write this post for awhile now. I just haven't been sure how to approach it. It's going to be very anti-pc. Of course anyone who reads my blog knows about Taylor and that she is profoundly developmentally disabled. That's a pretty long title but it is the politically correct way to describe Taylor. However, we who love her call her something else. No it is not the dreaded "R" word but I will admit that it is a variation of that one. It's one we find endearing to us.


Now, I realize there are going to be a lot of people that might be upset or horrified that I would use this word in talking about my child, but she is my child and I would never call anyone else's child by this name. I'm sure it helps matters for me that Taylor has no clue about the meaning of this word or even the above phrase…profoundly developmentally disabled. I'm just going to go with PDD from now on. Anyway, Taylor knows tone of voice. You could say the vilest curse words to her and if they were said in a sweet loving voice, she'd smile and laugh.


I'm sure you are wondering by now, what word could her family possibly be using that might offend you. Well, just the other day, we told Taylor that she will be the most popular tardy in her class today. I'm sure some of you sent up a collective *gasp* after you read that. Yes, I do use that word with my child. Partly because of the origin, which is too long to share with you on this post, but also to thumb my nose at everyone expecting me to keep up with whatever the most pc word of the year is when it comes to kids/people like Taylor.


Also related to the above issue is that, as The Bossman says, I do know how to play the "gimp card". Now before you really get angry at me, let me explain. The Bossman and I have been together for over 3 years now. 25 years ago, The Bossman was a cop in California. Unfortunately, an off-duty diving accident made him a paraplegic. I've never known him without the chair. Our first travel trip together really opened my eyes to how inaccessible things really are. We booked a "wheelchair accessible" hotel room. Guess what? We got to the room and The Bossman couldn't get his chair through the door. I was told by the front desk that "most chairs" can. I think I stood there with my mouth hanging open. Most chair? Seriously? His chair is less than the ADA required 36''. They were nice enough (insert sarcasm here because they kept telling us how nice they were) to open the room beside it because it had a wider door and let us use both rooms.


Since that trip, I refuse to have to do some sort of awkward shit just to spend the night away with The Bossman. When we went to a casino here on the Oregon Coast…they actually expected me to wheel him down a ramp, in the dark, without railings to keep you from dropping off a short cliff onto the beach, leave him there, walk around, go upstairs, open the main door, go in the room, unlock the back sliding glass door, and let him get in that way. No, I'm not kidding.


When the hotel receptionist told me that, I just looked at her and pulled out the gimp card (The Bossman's term) and played it like a pro. Needless to say, they gave us a suite in the tower with an elevator and a ramp to get in the building.


For those that think that "hey, you got upgraded without having to pay the extra $$", you're damn right. The problem is that I shouldn't have to "play that card". No one should. If you work in a hotel and you get a call from someone who says they are in a wheelchair and CANNOT walk, think about that when assigning rooms. Some think wheelchair means just having trouble walking…not completely unable to walk. We've had some think he could just stand for a second. Yeah…that doesn't really work well with a severed spinal cord.


Look, I don't expect everyone or anyone to understand my use of the word tardy when I talk about Taylor with family members or even when I'm talking to her. But it's my choice, my word, and it's said with more love than you could ever imagine. No, I don't say that word in front of others. Not because I think it's wrong, but because I don't want to make anyone feel uncomfortable or awkward.


This is just my world and I thought I would give you a glimpse of my total un-politically correctness. Feel free to disagree with me in the comments section. I welcome all respectful dialogue.


Now I need to do my "Yes I Did" Friday post.



Monday, October 26, 2009

Continuing Tales of a Bad Knee



I just wanted to jot a quick note to my friends to let you know that I haven't taken time off from the computer…at least voluntarily.


Since my partial knee replacement a few years ago, there have still been some ongoing issues. My surgeon and I are trying what we can to avoid a knee replacement revision as that is a big surgery.


Anyway, over the weekend, somehow I managed to break the blood vessels in that leg and it turned blue and swelled up. It's also very painful right now. Oh the wonders of strong pain meds! So per the doctors and most importantly The Bossman's orders, I'm relegated to sitting on the couch with my leg propped up and iced for at least the next few days.


I just didn't want anyone to think I'm such a mental mess that I needed more mental health days away from the computer. *laughs*


Saturday, October 24, 2009

My First Video

Okay, so The Bossman got a new video camera. Today was the first time that I used it. I decided to take some video of Taylor after she got home from school. This is the only one I'm happy with unedited, since I'm still learning that.

Anyway, I hope you enjoy getting a glimpse of Taylor.


video


Friday, October 23, 2009

Yes I Did Friday!

It's time for "Yes I Did Friday". This is the brainchild of Jeanette, so make sure you head over to her blog and link up.

Yes, I took a 10 day break from the internet, only using it for work and important emails. You could call it a "mental health" holiday.

Yes, I acted like a baby when The Bossman and I had a misunderstanding 2 nights in a row. Yes they were my fault and Yes I'm going to deny they were.

Yes I let my grandkids decide what they want to eat for dinner when I watch them even if it is cheese and crackers. It's a Nana's prerogative.

Yes I wrote "Dawn was here!" as graffiti on the inside of The Bossman's model train layout tunnel just for fun. (Third picture down)



Thursday, October 22, 2009

I Just Needed…

I've taken a little break from being online when I'm not working. I haven't written a post in awhile. I just needed the break. I needed to spend time reading my new book, "The Lost Symbol"…yes, it's a fabulous read.

I needed time to help the Bossman with his hobby, model trains. We had fun gluing the Styrofoam for the base of the mountain. I needed some time to play with my grandkids and have lunches with my daughter "B". I needed time to sit and snuggle with Taylor and watch her be silly. I needed to lay on her bed and watch her laugh hysterically at some new show she found on Nick Jr called "The Upside Down Show". If it has "slapsticky" type humor, Taylor laughs.

I just needed some time to enjoy the fact that Taylor isn't sick. Seizing? Always…but not sick. I needed some time to do nothing…to engage no one except the Man I love & the rest my family.

I just needed a break.

I will be posting a "Yes I Did" post tomorrow. After that, I'm going to try and introduce everyone to Taylor by catching her on video. I hope all my friends are doing well and I will be catching up on your blogs…I promise.

Thank you Won for checking on me. It meant a great deal more than I can explain.


Monday, October 12, 2009

The Rest of the Story

Taylor the "Dog Whisperer".

Obviously, I've known about the "Trip to Holland" story that most parents of special needs kids get from someone after their child is diagnosed/born. However, I hadn't realized that there were other parts to it.

A new friend pulled a Paul Harvey on me and sent me "the rest of the story". Thanks Won…you made me cry. Good tears though. There was one part that just seemed to catch my heart.


"So many people think that they are the only one that arrived in Holland against their will, but there are more people than you might think, that have arrived unexpectedly. Too many look, yet only really see their own situation, but if you open your eyes and really see, you will find most everyone has visited some part of Holland at some time in their life. And when they want to find a quiet place of connection, many return here."

I have found that to be so true. There are times when I am so absorbed in what Taylor and I are going through, that I forget there are others that have walked in my shoes to some degree. I have never thought that my situation was worse than anyone else's. I guess I just didn't realize that there are more people who can understand my emotions if I just open my eyes and heart and let them in.

Thank you again Won for sharing that with me. I don't think I could ever find the words to tell you how much it meant.


Friday, October 9, 2009

Yes I Did!


It's time for "Yes I Did Friday". This is the brainchild of Jeanette, so make sure you head over to her blog and link up.

"Yes I Did" ignore my daughter's phone call. I have specific ring tones for my daughters, click here to see how appropriate it is for them. Anyway, when I heard it, even though I knew my daughter was having a particularly rough day, I didn't answer it. I needed 10 minutes of peace. However, mom guilt kicked in and I called her back in 5 minutes. I do love her…honestly I do.

"Yes I Did" tell a customer to take their computer somewhere else to be fixed because he was being obnoxious. My man is a well-known and very trusted as a computer repair guy here in our town. We are so busy right now that I don't need to burden him with annoying customers.

"Yes I Did" listen in to a conversation in the doctor's office (well, you can't help it when you are sitting right next to people and they are talking loud). This family was trying to figure out what a certain drug was. You know I'm "almost a doctor" because of Taylor (inside joke certain people will get), I told them what the medicine was generally used for and then told them to discuss the side effects with the doctor.

What "Yes I Did" moments did you have this week? Join in…you'll have fun.



Wednesday, October 7, 2009

Trisomy What?

Taylor @ 2 years old, 3 weeks after her diagnosis.

There seems to be an "Awareness" month for just about everything. Last month was Pediatric Cancer Awareness month. This month is Down Syndrome Awareness month. We have Black History month, Breast Cancer Awareness month…the list goes on and on.

Now don't get me wrong. I have nothing against "awareness" months. Unfortunately, my daughter has such a rare syndrome that she doesn't have a month. Well, actually she sort of does if we lived in Alaska.

Taylor has Trisomy 9p. I suppose we could tag along with the Down Syndrome Awareness month since Down Syndrome is technically called Trisomy 21. They both involve having an extra chromosome. It's amazing what having just one extra chromosome will do. In Taylor's case, it isn't even a whole chromosome…it's just having the extra p portion of the 9th chromosome…which makes it even more rare than if she had the whole extra chromosome.

I hope no one takes this entry as me complaining about not having a month. This is just my nod to those of us with kids who don't have a popular or common syndrome. We don't have a colored ribbon we can put on our blogs or a celebrity spokesperson raising awareness. We get to do that ourselves.

What we do have is a close-knit community of parents who understand that we don't have anyone that understands exactly but each other. Taylor was diagnosed when she was 2 years old. Up until that time, we were out in limbo land. When we got the diagnosis, there wasn't sadness. There was relief. Finally we had a name. I guess when you know something is wrong with your child, it's no longer about hoping the tests are negative and more about hoping it gives you a name.

For those parents who have children that have any of the above conditions, please know that I'm not making light of them. These were just my thoughts for the day. My Taylor always has to be different and she just couldn't have a well known syndrome…she had to go for the rare.



Tuesday, October 6, 2009

Developing a Thick Skin


I've had this topic on my mind for a few days but I wasn't quite sure how to word it. I was reading a comment on a forum written by a mom whose daughter had a birthmark on her face. She was upset that someone had thought to use that situation as an example of a distraction in a school setting. I'm not going to address that particular situation, just what it made me think about.

I'm sure that what I'm going to write about isn't considered politically correct and it may even upset other mothers of special needs kids. However, it's just something I feel led to write. Taylor doesn't look "normal" and she never has. Even when she was little you could always tell there was something different about her. As Taylor was growing up, we dealt with stares and rude comments and I will admit that my feelings would be hurt a lot. I would get angry and lash out at the insensitive or unfeeling person. Of course, it never made me feel any better but I always thought I needed to be outraged on Taylor's behalf because she didn't know enough to "feel the slight". So I felt it for her.

As the years have gone by, I realize that my desire to strike back at rude people has waned. I have read the blogs of some parents with disabled children in wheelchairs who watch for people that park in the handicapped parking spots. Even if these people have placards, this mother will say something if the person doesn't appear to be visibly disabled. I have a placard for Taylor. Is she in a wheelchair? No. So by that mother's standards, I shouldn't park there. To her, my daughter having seizures every few minutes in a parking lot shouldn't mean that we get to park closer. Are there people who park in handicapped spots illegally? Of course…but to demand everyone "look" disabled is ridiculous and shows that ignorance can be found anywhere.

I guess my point for writing this is that after 20 years, I've developed a thick skin. Maybe if my daughter could have hurt feelings or understood things, I would think differently. But she can't. So why should I waste one second on a negative emotion when I can just focus on the silly, happy, child that Taylor is. There are always going to be ignorant and rude people. Don't get me wrong. If someone is just downright ugly about Taylor right to my face, then yes, I will say something, but i've learned to let the negativity roll off my back.

I hope that I've worded this post in a way that people understand what I mean. Taylor doesn't need me to be outraged on her behalf. She doesn't give a rat's ass…so neither do I.



Sunday, October 4, 2009

Take a Guess!

This is my youngest granddaughter Ally. She is a gorgeous little red-headed angel. Okay, I'm Nana, so I can fib a little. While she is precious and I love her beyond words, she does have the temperament that goes along with the red hair. This is a picture her mother, my middle daughter, took of her.



I took this next picture of her after she put on my glasses. I want to know if anyone else can tell me the movie character she looks like. I don't have anything to give away, but I would love for you to leave a comment letting me know what character you think she looks like. I know who I think she looks like. *laughs*





Friday, October 2, 2009

Yes I Did!


Jeanette started "Yes I Did!" Fridays.

Friday is the day to fess up to doing something that didn't exactly make us the brightest crayon in the box. To own the things we knew we shouldn't have done, but did anyway. Or to share something that we are proud of ourselves for accomplishing! So here is what I DID do this week…

I couldn't figure out how to start this post so I absolutely "borrowed" the above paragraph from Jeanette's blog. Okay, so maybe stealing would be a better word, but Yes I Did!

I most certainly DID tell my grandkids that the Nick Jr channel was going to sleep because it was the opening night of the NHL season and my favorite team was playing. I just had to change the channel. Of course, karma bit me in the butt as my team lost.

I let Taylor eat Apple Jacks for dinner the other night because there wasn't anything else she wanted. I didn't even put flaxseed on it or use organic milk.

I totally lost track of the fact that our business (home) opens at 9am and I was still in my pajamas when a customer came to the door. Good thing I'm a fast dresser.

I also spent so much time reading posts at OHIH, that I got behind in all my other work.

I'm positive that there are many other things I've done this past week that would qualify for this post but I just can't seem to remember them. It would appear that I'm going to have to start writing things down as they happen next week.


Wednesday, September 30, 2009

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.


Friday, September 25, 2009

What a 2 Weeks!



The past 2 weeks have seemed like a comedy of errors. So, we thought Taylor came through her surgery without any major issues. For the most part, she did. The pain medicine turned her from Princess Jekyll to Princess Hyde, but that was manageable. I'm not really sure why she reacted to the medicine this time as Taylor has had a lot of surgeries and painful procedures and been on strong narcotics before and not had any issues.


Then, we thought she was coming down with a cold this past weekend, so I took her to Urgent Care. They decided, after a chest x-ray, that she had a partially collapsed lung (not serious enough for chest tubes thank goodness) and the beginnings of bronchitis. We treated those symptoms with antibiotics. She seemed good to go with no fever for over 24 hours so I decided to let her go to school on Wednesday since it was early release anyway.


She seemed a little tired when she came home from school but nothing major. She did go to bed and actually fall asleep earlier than she usually does. Normally, I put her to bed, which means I give her snack and put her in her room where she will play until she falls asleep somewhere between 9 and 10:30pm. She is good about staying in her room unless she needs to use the restroom.


I always fall asleep on the couch while my better half works on computers until about 1 am or so at which time he'll wake me up and we go to bed. We happen to run a very successful computer repair business out of or home. He is very well known in our little town. Paul wasn't feeling well either so he had gone to bed at 10:30 so I just stayed on the couch. At about 2:30am, I woke up to the sound of Taylor coughing so bad I expected to see a lung when I went in her room.


I took her temperature and it was 102.4. Thursday morning, I called the family doctor and he saw her at 4. I was so not ready for a diagnosis of Swine Flu. I mean…really? Apparently, just as a precaution, when we were in Urgent Care Sunday, they had the IV nurse take a blood sample from her port and they also did a throat swab. I thought they were checking for Strep or something.


However, unbeknownst to me, they also were testing for the H1N1 virus. I'm guessing it was just an oversight that they didn't tell me because the doctors in the Urgent Care know Taylor very well and they are good with her and they always tell me what they are doing.


Her family doctor looked at the test results and told us about the Swine Flu. Apparently now, Taylor is the first one in the high school to have the swine flu so she is the wonderful reason for hundreds of those "a case of H1N1 virus has been diagnosed in the school so…" letters going out to all the parents. Yes, my child is special.


This flu is really kicking her butt. She was up most of the night either coughing or being really whiney because of body aches. It's really hard to know what hurts because she can't tell me. I just have to know the difference between a "pain" noise and a "I'm crabby leave me alone" noise.


She is spending most of the day in her room watching TV and reading her car magazines. She comes occasionally to throw her tub toys over the shower curtain and into the tub, then goes right back to her bed. I'll have to do a post on her obsession with throwing plastic toys into an empty bathtub.


Wow…this post ended up longer than I thought. I think I'm going to put my head on my desk ignore customers at the door…well, not really but it sounds good.




Wednesday, September 23, 2009

Sort of Wordless Wednesday





My daughter got a job yesterday…starting today. She is working with developmentally disabled adults. Hmm…wonder what experience she has. *smiles* Anyway, I'm watching my 2 year old granddaughter until she can work out daycare. My grandson is in school. I work as well so it's hard for me to watch them all the time. Ally and her Aunt TayTay are basically at the same age level. However, this is Taylor's room and Taylor's computer and Taylor's Sesame Street Toddler computer game. Now while she'll turn it on and let Ally play, even giving up her chair, she will not let Ally have control of the mouse.

Still, they play very well together…it just reminds me of David and Goliath, just with a nicer outcome. Wonder why? I find these pictures to be totally precious and decided to share them straight off my camera without editing.

Sunday, September 20, 2009

From Sweet Princess to Princess of Evil

Taylor sleeping with the aid of Dilaudid after surgery


It has been a crazy week. Taylor seemed to come through her revision of the revision of the revision of the VNS surgery. Are you confused yet? In other words, in 18 months, this is the 3rd VNS surgery she has had. I'm thinking this will be the last one…at least for 5 years. I won't even speculate if she will make it to the 5 years because I'm in denial of what the doctors are saying.


Anyway, after coming home, the pain medicine seemed to do a number on my normally very sweet child. She's had this medicine before since she's had a dozen surgeries so I'm not sure why the issues this time. I mean seriously…my affectionate, loving, sweetie threw lego bricks at me! She then layed on her bed crying and promptly fell asleep for several hours. After calls to the doctor and changes to her pain meds, she seemed a little better…until Friday.


She started coughing and running a temperature. We ended up going into Urgent Care this morning because her coughing made the incisions in her chest hurt worse. Now she has bronchitis. They also did a chest x-ray to make sure the surgery didn't cause a pneumothorax. Fortunately, while her lung is a little "under-inflated" (doctor's words), she didn't need to be admitted for a chest tube.


Why is nothing ever easy with Taylor? Why is a "simple" surgery never a simple surgery? Okay, sorry for being whiney. Taylor is just Taylor and after 20 years, you would think I would just accept the fact that Taylor does her own thing in her own time regardless how stressed it makes her mother.