Cheep, cheep... Cheep, cheep... Cheep.....

That is chick-speak for I had company this past Sunday!

Mommy's friend, Miss Terri, brought over some chicks for me to see. Mommy wanted to do this because a while back we went on a field trip to the UT campus and toured the animal facility. We saw all kinds of animals - birds, horses, cows, goats, pigs, and chickens. There was even a parade of different kinds of horses. When we got to the chickens they had a bunch of baby chicks. I really, really liked them. I even got to pet one! They were really nice a soft but they were noisy. 

Chicks sure haven't changed much because the ones Miss Terri brought over were nice and soft but they were still really noisy. Even so, I'm glad Mommy had her bring them. I didn't know they came in different colors! The one I petted before was yellow and these were black! Imagine that!!!

(Shhh... Mommy "borrowed" the picture Miss Terri took and put on her blog because she hasn't been able to get the ones she took off the video camera yet. She doesn't use it often so she's still learning how to work it.) 

So a BIG THANK YOU to Miss Terri for helping me get to do something I normally wouldn't have gotten to do. Mommy and Daddy appreciate when people take the time to do things like this for me. And I do too!

I'm getting a new wheelchair!!!

Mom and dad just found out from the insurance companies that they have decided a new wheelchair is "medically necessary" for me! I'm so glad!!! I am getting around better in the stroller we were given because one of my nurses made a panel that makes the back taller so my head doesn't fall backwards, but a wheelchair fit to me will be better.

It will look something like this one but customized to fit me. And it will be PINK!!!!!

To the people have donated money to the wheelchair/room fund. Thank you all so very much!!! Because the wheelchair will now be covered by the insurance and there isn't anything else I really, really need at the moment, Mommy says that the goal of that fund is currently for getting me into a bigger room.

Oh, she also told me that she is still working on getting enough recipes for the cookbook (a room fundraiser) so if anyone has any recipes they really like and would like to share PLEASE send them to her. She is still collecting them and will be until there is enough to make a good cookbook. She was really hoping to get it out last Fall so people could give them as Christmas presents. You can send them to her by CLICKING HERE. 

They wrote about me!

I asked Daddy to post this for me. A nice lady and man from The Daily Times came to my house yesterday, and today they wrote a story about me and the nasty people who stole my wheelchair! [Edit: link updated!] We are so grateful for all the folks who are interested and want to help. Daddy said I should tell you that the fund here began as a way to help me get a bigger room, but that we're going to have to use it to help me in whatever way I need most.

We still hope that insurance (that's a funny word!) will replace the one the nasty people stole, and if so, then we can use any donations to help get more space for me. I'm a little person, but all my equipment and the people who take care of me need a lot of room. But if insurance can't replace it, then we'll have to use any donations to help with that, because (don't let Daddy hear this) Daddy says he has gotten too decrepit (that's another funny word!) to haul me around. He's wrong. He should have said like a sack of sugar, because I'm an awful lot sweeter than flour.

Oh where, oh where has my wheelchair rolled off to...

My parents are not happy campers at the moment. You see, someone went into our van during the night and took my wheelchair. Now I can't go to my therapy appointments and doctor appointments without it really being a big ordeal.

Check mom's blog to see what happened... CLICK HERE

Cookbook news

Mommy really, really had hoped to have the cookbook ready for sale by Fall but that didn't happen. She is still in need of recipes so feel free to continue to send your favorites in to her by clicking here recipes@soapboxorations.com. I'm still dreaming of my bigger room, with enough space for all my equipment and space to move around better. I'm being patient.

As for me, Princess Junior, I am doing well. I was able to get my flu shot (regular flu - they never got the H1N1, or Hiny flu as my grandma called it, in.) and I have managed to dodge all other illnesses so far this Winter. I keep the nurses on their toes by having some up and down temp issues and because of that Mommy is being very selective about taking me out in the cold, I even missed a Christmas party yesterday, but she thinks it best to maintain my health. Mommy says that we are weathering some nursing issues but she trusts they will be resolved soon so I can have all my favorites here again.

My new Dafoes should be arriving very soon and we will be able to pick them up locally because the company has opened a new location much closer to home. They will be purple and pink. Yea!!! I'm also getting new hand splints that will help me keep my fingers open more. I'm still working hard at therapy. Mommy thought she was being nice and she bought me a wedge for home so now I have to work harder at home too.

I hope everyone is on Santa's nice list and that you all have a very blessed Christmas.

Mommy... I don't feel good.

I hadn't been feeling good all weekend. My nurse called the pulmo on Monday and he wanted my pediatrician to rule out some things before they got involved so my nurse called the pediatrician first thing Tuesday. We headed there and they did some blood work and took a urine sample (I hate both of those procedures!) and they came to the conclusion that I have another UTI. They put me on an antibiotic.

I still wasn't feeling good yesterday morning. It was very obvious because I wasn't moving around much and had the half eyed "Make it better!" look. Plus I was still running up and down fevers and my pulse was a bit higher than it should be, especially for being so still. So my nurse called the pulmo again and told them what my pediatrician had found and what was still going on. He gave her a couple things to do (one she had already done just before she called) and said that if I wasn't starting to get better in an hour to call back and he would probably be sending us to the ER. Well, that is where we ended up. None of us ever like going there because it's always a long, drawn out event.

I coughed up some huge green chunks while they were doing the pre-visit paperwork. I tend to be stingy with coughs so that was good. After they got us into a room I managed to fall asleep pretty quickly. Mommy says that about five or six people worked on getting an IV in me. I slept though the first three attempts. After that I was awake but because I didn't feel good I really didn't fight them that much. They used a machine that Mommy and my nurse thought was really cool. It's called a Vein Viewer. It shines a green rectangle of light on a body part and the viens under the skin show up! This is what it looked like on Mommy's arm. (Gamer Boy came to the hospital with me and he took the picture.)


Even with the Vein Viewer Mommy says that there were at least six or seven sticks in my hands arms and feet but they never did get an IV started.

They also did a chest x-ray but the doctor says that my lungs looked about the same as the x-rays from last August so he wasn't worried about anything there. He consulted with my pulmo and, because there was pseudonymonas in my trach (not uncommon) he changed the antibiotic to one that would hit the UTI and the pseudonymonas. They helped out Mommy and called it in to the pharmacy so she could just pick it up on the way home. She was worried because it was getting close to the pharmacy's closing time. It turned out that they didn't have any in stock but they called another pharmacy to fill it for her and that one was a 24 pharmacy.

So we got to go home and I didn't have to stay! YEA!!!!! Trips to the ER don't ususally end that way here. Mommy is pretty sure that it helped that I have the nursing staff here at home. It was a welcome surprise to get to go home and get in my own bed!

I'm feeling a bit better today. My fever is staying down better and my pulse, although still high at times, isn't what it has been. Something happened to my good thermometer a couple days ago. We tried changing the batteries but it still gives the same error message. :( We have a working one but this is the favorite and works the best so Mommy is going to have to get another one later today.

Decorated by my doc!

Friday Mom and Dad took me to see one of my docs for Botox. I look thrilled about it, don't I? Believe me, I was.

You can see the little white globs on my cheeks. That is the numbing cream to make the shots hurt less. I had it on my neck too. I had started arching my neck so Mom surprised me by talking to the doc about it so then I ended up getting four shots instead of just two. I knew I was getting the shots in my jaws but because she said something I also got them in the back of my neck. At least I don't have to get those or the ones in my shoulders too often.

Here Daddy is playing with me. I had been swinging my hands up in the air so I guess he was hoping I would hit his hands.


The best part of the trip was that we had a nurse sub and the one filling in is one of my buddies. I'm always glad to see him! (My regular nurse had car trouble on the way to my house and had to call to have them send someone else. And my night nurse was very kind and stayed until the sub could get there.)

I was pretty much over being out and either in my car seat of my wheelchair and my pulse was a bit high so Dad ended up giving me something to calm me down. Then I started running a fever. But I had a good nurse that night and she managed to make me feel better. I've been running one off and on since but seem to be doing ok now.