Wow! I'm 7 now!!!!

I had a great birthday yesterday. Mommy hasn't gotten pictures of everything yet but this is the hat she made for me.

Don't I look chic??? This is a hat that one of Mommy's Crochet Designer friends designed. I think that means she made it first and Mommy used her pattern. It's the Flopsy Hat by Vickie Howell  (You can get the pattern HERE and make it yourself!)

One of the presents I was given is a summer-y pink tie-dyed dress that will go great with this hat. I'm going to wear it on Sunday.

I got other goodies too...I now have a new shorts set that was made just for me. It's yellow and black and has lots of polka dots! And it fits perfectly.  Many Kisses Elmo came to live with me too. He's a kissing fool! 

Mommy also got me some neat puzzles and games. And of course she HAD to make me another blanket. 

Mommy said she did a Crab stitch around the edges but I don't see any crabs. And that's probably a good thing.

So now we will see what this next year brings. I have been making some progress with my neck strength so I hope that continues. I got to play on the bouncy balls at therapy last week and I really liked it. I'll get Mommy to bring the camera and take some pictures.

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!

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

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.

Guess what today is?!?!?!?!

IT'S MY BIRTHDAY!!!!!!!

I turned six years old this morning! Mommy and Daddy and my brother brought surprises in to me this morning! Mommy had given me a Winnie the Pooh birthday balloon yesterday. My brother bought me a HUGE Disney Princess balloon that SINGS!!! REALLY!!! When you tap on the balloon one of the Disney Princesses sings Happy Birthday and she wished that all my birthday wishes come true.


You can see the blanket Mommy made me under the balloon. Then Daddy opened my birthday present. It was wrapped in pink paper and it's a Winnie the Pooh book that talks and has things for me to do. It will be fun for the nurses and me to play with.



Then Mommy brought in cupcakes for the nurses.


I can't have any but my brother was creative enough to make my formula PINK! Now he says the feeding tube blends in with my bed.

Update...

We are still planning to expand the house for Princess Junior but at the moment things are at a stand still due to other family things that need to be dealt with. And we still need LOTS of recipes!!! I'll try and post a list of what categories are needed most soon. Please contribute even if you have already!

On the health front: We took Princess Junior to the surgeon last week because her G-tube button seemed to be dimpling in. Consensus was that she still has a bit of growing room before it really has to be changed. We verified this with her physiatrist a few days later in case her diet was causing the dimpling.

Changing her particular button (A BARD not a Mic-Key) is done at the surgeon's office (or in the hospital if the child is there) by the surgeon or his/her assistant. It is NOT something that the nurses or we do here at home. A lot of parents like the Mic-Key button better but we have not had any major issues with the BARD and really like it. Another negative for some kids is that the change (taking the old one out and putting the new one in) is done sans anesthesia. And we have been told it really hurts. But Princess Junior doesn't register pain "normally" and actually slept through her first button change. So this isn't really an issue we have to contend with.

So, at least for a few more months or so, we are good to go on the feeding button issue! We are now massaging vitamin E oil the scars from the original insertion (There was some cutting done when the original button was put in and, yes, there was anesthesia at that point.) as her physiatrist thinks that the scar tissue may be pulling in the underlying skin and that is causing the dimpling. Massage is much better than pain!

Do I sleep well???? YES!

When you are a Princess you are a Princess 24-7. One of my night nurses found this out when I took a regal nap. I must be waving to my loyal subjects in my dreams. And I need to work on the leg crossing thing. Mom says that crossing them at the ankles is much more lady like.