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.


heather said...

wow! first of all shocked at the doctor worrying about taylor's weight. it seems perfect to me!

and taylor is writing her own book, and though it may have ups and downs, it will be an awesome book!

lots of love...

barefootRhys said...


your love for taylor comes through everyday. she is a wonder and a joy. i am glad you've got a dr who cares about taylor as a person.

Robin in Montana said...

I love that saying -- "writing her own pages." ((Hugs to you and Taylor. And the Bossman. :-D)))

Tina said...


I love to hear you talk about are a special mother!!!


FalkFamily said...

She is lucky to have a mom like you. Truly.

P.S. you just made me laugh @ OHIH and I wanted to let you know without feeding the troll :)

Jennifer said...

I hope the med makes Taylor's life easier. I agree with everyone else- Taylor is lucky to have you, it shines through how much you love her.

The doctor who thought she needed to lose weight? Was obviously on the meth that troll's been talking about!

Jennifer said...

I gave you a blog award on my blog today!

Anonymous said...

I hope things take huge turns for better! Best wishes for good stuff!!

Alicia said...

Thank you for your comment on my blog. You are welcome there anytime! : )

I just spent the morning reading your blog and I have to say that your love for Taylor jumps off the screen! She is a beautiful girl with a sweet soul. I love the pictures from a couple of your posts in Sept of Taylor and her sister and Taylor and Daddy at the circus. It is so evident your Taylor is surrounded by love every second of her life!

I am going to be "following" your blog now. : )

Blessings to you and have a great week!