Unwrapping My Present Today

I've decided that my Christmas gift to myself this year will be time - more time with my children, more time with a book and not a computer, more time experiencing instead of writing about experiences.

My children and I are so very blessed, and I feel the need to just concentrate on those blessings for a while. I don't want interruptions from the email call, 'You've Got Mail.' I don't want to read Facebook posts that threaten the peace I feel during this glorious holiday time. I don't want work stressors to invade my mind.

I want to hug more friends, fill my family with hot cocoa and cookies, and watch cheesy holiday movies. I want to snuggle on the couch, smell wood smoke in the air, and wear new Christmas pajamas.

To make these things, and all my other holiday wishes front and center, I need to take a break from blogging. For the next few weeks, I am going to step away from the computer and step toward my blessings. I've included one more video for you of another of my favorite songs in ASL. I hope you all have a wonderful holiday season and that all your dreams come true! See you in January!

Special Exposure Wednesday

I'm not sure this is exactly what Apple had in mind when they created their FaceTime software...

In Their Memory

I've wanted to write something about the Newtown tragedy ever since it happened, but I just can't find the words.

From the first moment I heard about the shootings, and with each news report since then, I get a tight knot in my stomach. I can't separate what happened to the children and adults in Newtown from what *could* happen to my children.

I had the same feeling about the 9/11 attacks. From a rational point of view, I could accept that on that September day it was unlikely that my children would be targets in their elementary school. But it didn't matter - I had to leave work, I had to pick them up from school, and I had to hold them tight.

Such tragedies can't be in my mind and my heart something that happened to other people, other children. The very fact that it happened to them means it could happen to my children, and such a thought leaves my no words to express my feelings.

I'm on edge now just like I was after 9/11, just like I was after the movie theatre shootings, just like I was after the Virginia Tech killings, and just like I was after the mall shootings. In fact, I have trouble going into a mall or a movie theater, or any public place for that matter, without scoping out escape routes, playing out 'what ifs' in my head. And there's one thing I know, I absolutely do not like living like that.

I don't have any answers, and don't even want to start debating things like 'more gun control' or 'less gun control'. I hate that we have to consider increasing the security in our schools. I hate that we are taking away the innocence of our children, and the peace they should be feeling as they grow. And I hate that some people will be saying that the Newtown killer had Autism and that is why he did what he did.

I want to find a way to tell my children that evil does exist in the world, but that they can't live their lives dwelling on that. And then I need to learn to take my own advice.

I am so sorry for each and every one of the parents, husbands, sisters, other relatives and friends of the people murdered in Connecticut. I hope you can find some peace in the fact that as a nation our outrage will drive us to positive change for the future. We will do it in your loved one's memories.

I Hope My Child Has Scurvy

What? Does that sound strange to you? Strange that I really hope that Ashley has scurvy? Well, it's true.

About 6 weeks ago, Ashley started having problems with her foot and ankle swelling. The doctors have ruled out a blood clot - the scariest thing that could be causing the swelling. But, we are still waiting on a cat scan under anesthesia to get scheduled to see if that gives any clues about the swelling.

Then last week, Ashley came home with a strange rash-like coloration on her right forearm and hand. The school staff and I couldn't come up with anything that might have caused it, so off to the doctor we went again. The doctor called it petechiae, and immediately began scouring her medical resources to try to figure out what strange disease or condition might present with both a swollen ankle and foot and a rash on one arm.

We spent three hours in the doctor's office that evening last week. The cleaning crew was in, but the doctor and three nurses refuse to leave until they could figure something out. After 8 tubes of blood and instructions for obtaining a urine sample, we went home to wait the test results.

All the scary things have been ruled out. Ashley's glucose and electrolytes were fine. Her kidney function and liver function were fine. Test for autoimmune diseases came back negative. And finally, the urinalysis revealed nothing out of the ordinary. But the doctor kept researching, researching until she found a likely culprit - or at least a culprit that is easy to treat while we wait for other tests and the cat scan.

That likely culprit is scurvy. Yes, the disease of 17th and 18th century sailors making their way across the oceans without proper nutrition, specifically foods rich in vitamin C.

Ashley does have a very limited diet. She was tube fed for quite a while, but after a couple of years in the feeding clinic at our local children's hospital, Ashley has been eating by mouth - but not eating a wide variety of foods. As the doctor and I went over in detail what Ashley does eat, on the surface, it's not too bad. Raw spinach, peas, apple sauce, mac and cheese, hummus, yogurt, potatoes, and lots of cheese. What is missing from that list is any food to provide vitamin C.

So the doctor has started Ashley on a daily multivitamin and twice daily vitamin C, both liquids given through her G-tube. And already, Ashley's arm has improved. Her swelling is still there, but the doctor thinks that may take up to a month before we see improvement if the culprit is scurvy.

So now you understand why I say I hope Ashley has scurvy. It's very easy to treat - nothing invasive, nothing too difficult.

Here's hoping scurvy is truly the culprit!!!

I Need You, Dr. House

Recently, Ashley has had so many different and unusual symptoms of things gone awry that I feel we are living in an episode of House. I'll report more next week after some more blood test results are in, but for today, I thought you might enjoy this litte House montage. I needed a little uplifting today, and this did the trick!

Letter to Santa

Dear Santa,

Ashley asked me to write her letter to you this year. She really only wants one thing for Christmas - a break!

Between the (still) swollen leg and foot, the too-many-to-count ear infections, the physical abuse inflicted by a school employee, and now, the unexplained scary rash on her right arm, she says she has had enough.

She really isn't greedy. She understands that people have to deal with illnesses and injuries, and she is indeed willing to endure her fair share. It what comes above that fair share that she doesn't want.

So, she said you could forget the toys, the clothes, the makeup, and the other wonderful things you have brought her in the past. She really only wants a break. Do you think you can find one of those in your magic bag?

I really hope so!

Cordially yours,
Ashley's Mom

Special Exposure Wednesday

There's nothing better than playing blocks with your big brother on a rainy Sunday afternoon!