Happy Birthday Sweet Girl!

Taylor is 22 years old today!  It’s hard to believe that there was a time when we were told she would never see toddlerhood let alone her twenties.  Of course, she is a 22 year old “toddler” so I guess it all evens out. *laughs*

I see each birthday now as a gift.  I feel so blessed to see her smiling face each & every morning.  Well, the mornings when she decides to stay up until 3am while making 5,000 trips to the bathroom are ones when I’d prefer to see that smile a little later than 7am.

So, what do you get a girl who has everything she wants?  You give her the things she considers to be the best stuff on the planet.

1 car magazine – $6.00

1 caffeine free diet coke – $1.69

2 packages of Gummi Worms – $3.00

3 Mylar Spongebob balloons – $10.00

1 huge grin & a drool enhanced hug & kiss =

                                             PRICELESS!!!

 

Courage

I’ve finally found the courage to write this entry.  I struggled with writing it because I was worried about what some might think & I finally let that go.

I’m confident in the decisions I’ve made & I can’t let what others think scare me.

Taylor was diagnosed with chronic myeloid leukemia.  While this type of cancer is more common in older adults, it can happen at any age.  The oncologist believes Taylor developed this type because it involves issues with the #9 chromosome and Taylor has Trisomy 9p.

We are not exactly sure what stage Taylor has because we are not going to do a bone marrow biopsy.  The reason for not doing one is that we are not going to seek treatment.

I’m sure there will be people shocked by that.  I follow the blogs of some DS children being treated for leukemia.  However, we don’t feel it’s in Taylor’s best interest to put her through chemotherapy.  I’ll admit to being scared when I shared that decision with the oncologist but he was surprisingly understanding & sympathetic.  He actually agreed with our decision.

Taylor has many other health problems and we’ve been told that she’s already outlived the expectations of all her doctors.  I want whatever time Taylor has left to be happy.  All her doctors believe that the side effects from the chemo outweigh the benefits of putting her through the treatments.

Believe me when I say that there was a lot of thought and research  that went into the decision that we made.  Right now, we are treating any symptoms that might make Taylor uncomfortable and her doctors are on board with that. 

I know in my heart that we’ve made the right decision and the best decision for Taylor.  Of course there is that part of me that wants to do whatever it takes to keep Taylor here with me.  But how selfish would I be to subject Taylor to being sick & unhappy just for my benefit?

I’m sure there will be people that think I’m doing the wrong thing.  I would ask those people to keep in mind that they don’t know Taylor’s medical history.  They need to understand that the decision we’ve made is made with the love we have for Taylor.  I love that girl more than I could ever put into words but I have to do what’s best for her…not what’s best for me.

Right now, we are focused on keeping Taylor happy & comfortable.  Taylor is surrounded by the people and things that make her happy & fulfilled.  She has her diet coke, car magazines, computer filled with Barney videos, grapes, & her TV .  Sounds like the perfect life to me.

Besides…Taylor is stubborn enough to outlive us all despite any diagnosis.

 

Taylor & Barney

 You know, I’ve realized lately that my last post didn’t quite start out the way I had envisioned.  I started off with the picture first, then the title.  When I started writing, well, you can see how that turned out so I do apologize again for a cheery title and then the downer post.

I try to limit those posts and I think that’s why I hadn’t written here for awhile.  I’m one of those bloggers who starts writing and then just lets go.  Sometimes, it’s not such a nice post.  I will say that Taylor is sick again with another bad case of bronchitis.  The doctor isn’t happy with Taylor’s increasing lung issues but I’m not going to write about that today.

Taylor started watching Barney when she was 2.  Yes, Barney the dinosaur is an oldie.  She quit watching when the show caved to all the criticism about how it was annoying for parents.  That kind of sucked for me because I can honestly say, Taylor learned more from Barney than she did from going to elementary school.

Oh how she loved those songs and learning all the motions.  She would drive us crazy, in a good way, to sing those songs with her.  You know, ones like “Apples & Bananas”, “Boom, Boom, Ain’t it Great to be Crazy, & “There Was a Hole”.  I’m not sure of the last title being correct but it was the first line of the song.

She really loved the Barney theme song and still loves to hear it.  One of her favorite Barney shows was the movie “Imagination Island”.  So the other day, when Taylor  spent the night with her sister, Brandy found it on Netflix and put it on the computer for her to watch.

Brandy had to call me so she could tell me that Taylor was going crazy with excitement.  She said she could hear Taylor all the way in the living room even with the bedroom door shut.  Of course, there was a minor downside.  Taylor wanted to keep watching it and at 11pm when she should have been sleeping, she was still laughing hysterically while watching it.

I’ve been thinking about trying to find the older Barney’s on Amazon and see if they’ve put some on DVD.  That might help with some of Taylor’s boredom now that she will only be out of the house about 3 or 4 days a week.  Maybe I can find this one too.  Taylor loved this show as well.

To say that Taylor has an eclectic taste in TV would be an understatement.  She loves “Blues Clues” and “Barney”, but you can still find her watching ESPN every day especially if there is baseball on.  She also loves “Sports Center”.  I don’t get where that one came from but then the inside of Taylor’s head is like sliding down the rabbit hole. 

She is my silly, loving, affectionate, car magazine loving, caffeine free diet coke drinking, cheese Ritz Bits eating, toy throwing in the bathtub light of my life. 

I’m thankful for everyday I can see her smiling face and get a slobbery kiss and giant hug from her…nothing better on the planet.

A Little About Taylor

We have finally weaned Taylor off of the one seizure medicine. I haven't noticed an increase in her seizure activity but then, she has so many seizures a day, I think it would be hard to tell. Now it's just getting someone to prescribe the new drug. Taylor sees 2 neurologists and they each think the other one should follow Taylor and prescribe the new medicine. It sounds like a comedy of errors right now.

Taylor is having some pretty rough seizure days right now. The seizures come like contractions…anywhere from 10 to 30 minutes apart. There are hundreds of them a day. She will just start shaking or staring off into space. Her absence seizures usually involve her eyes looking off to one side and her rolling her hands up in her shirt. She actually has a seizure we call "the Elvis". She shakes on one side of her body and one side of her mouth sort of goes up in a sneer…sort of like Elvis Presley. There are just some things that are better dealt with using humor.

Taylor loves her mp3 player. Right now, she is fixated on listening to it all the time…especially when she is throwing her tub toys over the shower curtain and into the tub. There is just something about the sound of the plastic hitting the tub that makes her laugh. Taylor also loves her photo albums. We have family pictures in there and she will look at them so much that we have to buy new albums for the pictures about every 6 months.

She still loves Spongebob Squarepants, but she has found the Nickelodeon show "Drake & Josh" now. We will hear her in her room laughing hysterically. I think it's because she has always found slapstick kinds of things funny. Taylor also loves car magazines. Mustang 5.0 is her favorite but she will look at the free AutoTraders till they fall apart. I have no idea what it is about car magazines that she finds so fascinating. I just know that when we go to Wal-Mart, she is drawn to the magazine section.

Taylor is definitely an interesting character.