Happy Mother's Day, Mommy!

Dear Mommy,

Since I can't write myself, I asked Daddy to write this for you. He's such a big baby, I hope he can manage it for you. I haven't even gotten a paragraph out, and he's sitting over there blubbering.

Anyway, I just wanted to say Happy Mother's Day. I know it's not easy having a special needs child, especially since you have some physical challenges of your own. But I want you to know that I know all the things you do for me, and all the things you do for your family. I may not be able to talk, but I see what goes on around me!

I'm very grateful for my Daddy and my big brother who lives with us and helps take care of me and my other brother and sisters who love me and my nurses who take such good care of me. But my Mommy is special. I hope you have a really good Mother's Day, and that you know that I love you.

We may not have been able to keep this blog going, and not many people may see it, but it's a way that I can get this message to you, if Daddy will just stop being silly.

Love,
Princess Junior

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.

Update on the wheelchair #2 - Close but...

Mommy and Daddy took me to get my new wheelchair yesterday. At least that's what they told me. I slept through it all so all I know is that when we got home I still didn't have my new chair. Since I slept though it I'll let mommy tell you what happened.

As the Princess said,  we were supposed to get her new chair yesterday. We arrived there to find several other little girls getting new electric wheelchairs, one little girl (who looked smaller than the Princess) was even operating hers by her feet!

We went into one of the small rooms and waited. The Princess was having some O2 issues so we took the time we had to wait to get her out of the stroller and get her onto the therapy table and reposition to get the O2 issue dealt with.

Then the chair comes in...

 

This is what R rolled in. I thought it was a bad practical joke at first. I told R "No, that isn't what I ordered." but the tag has her name on it! Anyone who knows me knows that I do NOT like orange. And this was pretty close to UT orange so that just made it worse. R checked the paperwork and... sure enough, it was supposed to be Pearl Pink. He called the supplier and they were all apologies and expedited arrangements have been made to replace the colored parts of the frame. Now R will have to take this one apart and rebuild it when the other parts get here. It will look identical to this since it will be this chair except the orange frame pieces will be replaced with the correct Pearl Pink frame pieces. We are looking at another about 2 weeks before it's ready. We rescheduled her seating clinic appointment that was scheduled for Monday (no seat, no reason to go!) The soonest we can't get her in is in AUGUST!

So we went home with a new loaner that works better than the stroller we were given. We returned the wheelchair they had originally loaned us. This one is an adult chair but it isn't made for someone who can propel themselves like that one was so less danger of the Princess getting wheel-burns on her arms. The seat is a bit on the big size (adult and all) so her legs can't dangle down normally. But she looks SOOOO cute and very comfortable sitting tailor-fashion on the seat. We are thinking that it might even be more comfortable on her hips.

On a happier note... Since R was able to find another loaner we gifted them the stroller we had been given (passing it on) for them to use as a loaner for other kids in need.

Update on the wheelchair

Since people keep asking Mommy and Daddy about my wheelchair I told Mommy that it might be a good idea to say something about it here. 

No, I haven't gotten it yet. We're still waiting on it.  Mommy called a couple weeks ago and they were still waiting on parts. Daddy called on Monday and they had one part left to go. Hopefully we will hear from them next week. When we do get it Mommy will post a picture of it. Did I tell you it's going to be PINK?!?!?!?!?!

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.