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!

That Scary Man in the Red Suit

I must admit that the worst part of the Christmas holidays has always been trying to get my children's pictures taken with Santa. The picture to the right was my last attempt at getting a picture of Ashley with Santa. I cajoled her personal care aide into attempting the meeting, hoping that if Ashley was with someone other than me, she might behave differently. (I was wrong...)

I have a whole slew of pictures and even a couple of videos of my oldest son taken with Santa. But I only have a couple of pictures with Ashley, taken when she was an infant. I've tried over the years with her, but after three annual pictures of her screaming as she was being led up to Santa, I gave up.

Had something like this, A Caring Santa, been around, I might have been a little more successful. According to the Caring Santa website, "Children with special needs and their families are invited to a special photo session with Caring Santa in an environment set up to support the sensory, physical and other developmental needs of kids with all abilities." You may want to check the website to see if the Caring Santa is going to be at a mall near you.

What about you? Do you have any special techniques or strategies for getting a picture with Santa for you child with sensory or other developmental needs?

Move To The Back...Of The Restaurant

This might just be my imagination, but it seems that often a restaurant receptionist will seat my family in a far corner, away from the other diners.

It happened again this past weekend.

I can understand that we are seated wherever there is a table (instead of a booth) since Ashley and Ronnie use wheelchairs. But in the restaurant we went to for lunch on Saturday, we passed several open tables in the main area and were taken to the back. The only other diners there had a small child who was obviously not having a good day.

I've noticed this in nicer restaurants as well as the more family-oriented ones.

Do they think my children may make a scene? Are they uncomfortable with obvious disability and don't want to disturb the other diners? Is it uncomfortable to eat beside a person that is blind or a person with spina bifida?

Like I said, I hope it is just my imagination, but it really has happened enough times to make me think it's not. Have you experienced anything similar?

Since we eat out a lot as a family, I think I will start paying closer attention to try to figure this out!

So Tired of This &^%$*#

Dear St. Mary's Hospital Administrator:

My daughter, Ashley, is 17 years old and has many special needs. Unfortunately, she also requires a lot of medical interventions. In the past, we have always found the medical help she needed at your hospital. Sure, there have been some bumpy spots along the way and that one time that was beyond words bad, but overall things have gone well. Until yesterday...

Ashley has had a severely swollen ankle and foot for 6 weeks now. When it started, her doctor had us immediately go to a hospital that was not yours (because you weren't available on a Saturday morning for an emergency) for an ultrasound and blood test to rule out a blood clot, a life threatening condition. Fortunately, there are no blood clots. But Ashley's ankle and foot are still swollen.

Ashley's doctor then decided to order a cat scan under anesthesia at your hospital. When I didn't here anything from your staff for two weeks, I called to find out when the procedure would happen. Your staff couldn't tell me because they had lost the doctor's order. So, we began the process again.

The doctor resent his order - your staff called me four (!) days later and we scheduled the cat scan under anesthesia to happen a week and a half later - which was supposed to be today. All the while Ashley's ankle and foot are getting worse, worse to the point that she must now use a wheelchair all the time.

Your staff person responsible for obtaining insurance authorization for Ashley's procedure waited until 3pm yesterday, the day before the procedure was supposed to happen, to contact both insurance companies, companies whose normal business hours end at 5pm. Needless to say, that was not enough time to obtain the authorization, and your staff person called to tell me we would have to cancel the procedure or I would have to pay out of pocket. Given the exorbitant fees your hospital charges, paying out of pocket is not an option, and so the procedure was cancelled.

I have no idea when it will be rescheduled. Your staff person couldn't tell me. What I would like to know from you is what I should tell Ashley.

When she asks why she can't participate in the basketball game at school, what should I say? When she asks why she always has to use her wheelchair, what should my answer be? When she complains about not being able to wear a shoe on her swollen foot, what do you suggest my response should be? And if and when we do get the procedure scheduled, and hopefully find out what is going on with her ankle and foot, what should I say if the answer is not good and the problem should have been addressed sooner?

Your hospital's tag line is "Good help for those in need." Well, we are in need, and there has been no good help. So what now??

Angrily yours,
Ashley's mom

Just Following Instructions

Happy Friday! Have a great weekend!

Trying Again

Remember about 5 weeks ago, I wrote about Ashley's swollen left ankle and foot? Well, it's still there. The doctor seems to be a little out of his league on this one, but he did schedule a cat scan for tomorrow.

Like all hospital procedures for Ashley, the scan will be done under anesthesia. We are scheduled to arrive at the hospital at 7am, and hopefully all will go smoothly and we will not be there long. I've never been through a cat scan with Ash before, but I really hope they tell me something before we leave the hospital.

When I have to take any of my children to the pediatrician's office for a sick visit, it's anybody's guess which of the 8 doctors we will see. I, of course, have my favorites, but can't always see those doctors. When I took Ashley in back on November 1st, we didn't get paired with one of my favorite doctors. But, until now, we have stuck with the doctor we saw even though, as I mentioned before, he seems a little out of his league with this ailment.

But, during a visit for an ear infection earlier this week when we did see one of the doctors that is most comfortable with Ashley's many and complex special needs, I brought up the subject of her swollen foot. I think the doctor could sense I needed her on this case, and she stepped up to the plate!

She told me to call her if I didn't hear anything while we were still at the hospital. She said she would then call and have an answer for me before the end of the day.

We may not figure all this out with the cat scan, but I am way more comfortable now knowing that doctor #2 is aware of the issue and is willing to step in.

Please keep Ashley in your thoughts and prayers on Friday.

Special Exposure Wednesday

Christmas is Ashley's most favorite holiday because of all the lights!

Two of My Favorites

Ok, I'm starting to get in the Christmas spirit now! Perhaps it was getting my house decorated - or maybe it was the shopping for presents - or even pouring over cookie recipes - but I'm there now!

Here are two of my favorite Christmas songs that I wanted to share with you. One is more professionally done than the other, but I love them both, especially the way the person in the second video starts to warm up as the song goes on!

Tell me what gets you in the Christmas spirit...

A Grown Up Tree

For so many years, 21 to be exact, our Christmas tree has been decorated with kid-made ornaments, ornaments in bright shades of red and green, and ornaments with faces of Sesame Street characters.

But now....my children are all grown up and it is time for a grown up tree! A tree decorated 'my' way! We haven't finished decorating yet, but it is turning out really great - lots of seashells to coordinate with my beach-themed house, shiny balls of gold and silver, and strings of pearls to represent pirate booty (that was Chip's idea!).

We will still have Santas and reindeer, and cute pictures with Santa from years past. But, for once, the tree is my creation!