Tuesday, January 29, 2013

The hands...

A lot of things about Rett Syndrome suck. All of the things I guess, but I said to Chad last night it would just make such a difference if even one symptom could be "treated" or "cured". My pick would be the hands. Luckily for us Lucy has not experienced seizures, or pneumonia, or not being able to eat on her own, otherwise I would probably reconsider my choice. We still have hopes that someday Lu will be able to walk in some capacity...she does now a little bit at a time with us holding under her arms. There are amazing ways that she can communicate without being able to speak. But those damn hands! They break my heart!

What if she could feed herself? What if she could play with all of her toys and play pretend? What if she could color and draw, and paint and turn the pages of her books again...all without someone else's help? What if she could do something as simple as brush the hair out of her face, or itch her nose, or fix her clothes if they are bothering her...but she can't do any of those things by herself. She made some beautiful finger paintings the other day, and she can color using the universal cuff I have shown in a picture before. We colored a picture using the cuff the other day and she started really moving her hand with the intent of coloring, which she has never really done, and she was just so proud of herself and so excited! And of course I was over the moon! She usually seems pretty unimpressed with the idea of coloring, but I keep trying it with her and when she finally realized she was controlling the crayon and was making color on the paper I think it clicked with her!

I just wish it would all go away. I spend most of the time being as un-mad as I can be and then like I have said before, it'll just sneak up on me and I get ticked and this time I am especially mad about the hands! But, as usual, we will just keep trying to find ways for her to do things in spite of those hands and in spite of Rett Syndrome.

Monday, January 28, 2013

Last week

I have tried twice to start a post about an appointment we had with a genetic counselor last Thursday, but we had a rough week.

First, Chad and I did not remember to check our fuel level and we ran out. That was bad enough, but JJ Powelll kept telling us they were coming "tomorrow" and never came. Even on Friday when the driver had the ticket to deliver fuel to our house, he never came and they had no explanation as to why, nor did they seem interested in trying to figure it out. Luckily we have a pellet stove and an electric heater for back up. However, Chad wasted two personal days waiting on the fuel to come so he could "bleed the lines".

On the same day we ran out of fuel my car wouldn't start AGAIN and needed jumped AGAIN so we had to go get a new battery for it.

The toilet started leaking and Chad figured out (by googling it) how he could fix it, but the bolts he needed to take off we're covered with epoxy, so now there's a classy cool whip container under the toilet tank.

My blender broke.

Maggie has not been good for anyone's soul because she is crazy, like puppies are.

We had to go to Danville for the dumb appointment and went in the wrong entrance. Going to Danville sucks.

And now I am sick. Aching, stuffy, sneezing, nearly threw up in bed last night, but made it to the toilet. I'm not even nauseous, so I don't know why it puked, snot I guess. Snot just running out of my nose like a faucet. I'll finish the post about the genetics appointment when I feel less like junk.

Saturday, January 19, 2013


Yesterday we went to Kindermusik and out to lunch with my friend Missie and her daughter, Celie, who is a few months younger than Lu. While the girls were waiting for their food I was giving Lu blueberries and crackers and was sharing them with Celie. As toddlers are inclined to do, Celie was very "enthusiastically" demanding more and more blueberries and crackers. Lucy made a little face and I asked her if she had something to say and she said yes, and then using her book said, "Mine!" My heart nearly burst right out if my chest!

It is ironic, the feeling of pride I felt about Lucy making essentially a "greedy" comment about her snacks! Parents are supposed to teach kids to share and be fair, and after my initial elation passed I did tell her that I know they are hers, but it is nice to share with our friends. However, "typical" toddlers say, "MINE!" It's what they do, and it's what Lucy did too, just like every other toddler! I don't even know how to express how happy it makes me that Lucy was able to say and do something just like her peers do, even if it was one of the less desirable attributes of young children.

Lucy has literally not reached a gross motor milestone since she learned to stay in sitting on her own, when she was about 7 months old. If she is lying down, she can't sit up on her own. All of her liquids come to her in a bottle that I give her sitting on the couch, she cannot dress herself, or feed herself, or walk, or play with most of her toys in the typical way. She can't hold a crayon or a paintbrush. But she can say "Mine!" She can say anything she wants to, whenever she wants to, and to whoever she wants to!

Her continuing progress and success with the PODD book makes all of those other things a little less rotten. I feel less sad. I realized that sitting on the couch last night. When the day is done and we are just sitting quiet and still on the couch, I am always aware of a lingering sadness and anxiety about what the future holds for Lucy. Last night, I felt it significantly less...all from that one little word: MINE.

Thursday, January 17, 2013

The World According to Lucy...

I have been meaning to sit down and write this post for some days now, but with the new puppy and just STUFF in general I am just now having time (and I only have 10 minutes until Mom brings Lucy home!)

On New Years Eve Lu said she had to go to the bathroom, and she did! I already posted about that, and then the last post was about Lucy's thoughts on the puppy, but in between there and since talking about the puppy, she has said all kinds of things! It is amazing and she is amazing and the PODD books are amazing! I'd like to just list some of my favorite things she has said. I keep a little log of what she says each day and the context in which she says it, but I don't have time to mention all of that right now! I'll do my top 10 favorite things Lucy has said, I can't even believe I can say that, it's just too awesome!

1. In reference to Roberta, the OT saying she liked Lucy's jammies, Lucy said, after laughing
A LOT, "I like this, lucky, nightwear." That was the first longer thing she said. The way the book is set up, things she says starts with "I like this" or "I don't like this" or "something's wrong" and so on.

2. "I have to go to the bathroom" but when I took her up to the potty she didn't go and I was talking to her about how it is best to try to only say she has to go if she really does, but it's okay if she thought she had to go. When we came back downstairs she said, "please, I need to go to the bathroom" and I reminded her we had just been on the potty and she said, "just kidding mom" My mom pointed out that was the first time she has really said "Mom"!!!!!

3. "I like this, funny, cool, me, good, good job."

4. "I don't like this, makes me mad." She said this when I was being insistent about her drinking water at supper.

5. After Lucy choked a little on some cereal at breakfast she was crying and fussing and she said, "Something's wrong, sad/upset, want someone, mom" (that was maybe my favorite so far!)

6. "Done/finished" she tells me this at meals sometimes!

7. One of her favorite things to say that she says pretty often is "I like this, lucky, cool." My mom reads her the Dr. Seuss book, "Did I Ever tell you how Lucky You Are" and we think that is why she says lucky all the time!

8. When I told Lu we were going to get the puppy and she was going to stay with Grammy and Pappy she said "Let's go, in the car"

9. One night in a sort of round about way she said her t-shirt was too tight, but then I figured out she meant possibly her bib.

10. Today, after she didn't pee on the potty, but then peed on her changing pad, she said "I like this, cool, cute, mom"!!!!

Ok I have more than 10!

11. While sitting in a new special chair we are trying out she said, "Something's wrong, cold." So I gave her a blanket!

12. Yesterday I told her with her book that we were going to the library and the grocery store and she said, "I don't want to do it" and then I thanked her for telling me, but told her that sometimes we all have to do things that we don't want to do and she had to come with me.

Lucy is getting better and better with using her head for yes and no and even does it sometimes without the buttons that we use to say yes and no for her. A question that comes up often by others is "How does she even know what that picture means?" We'll, of course she doesn't know all of the pictures, but the program is set up in a way that helps her to learn. What's even more important is that we believe she knows things and that she is capable of learning them. That's why she is doing so well, because we believe in her.

Sunday, January 13, 2013

Lu and her puppy

We brought Maggie home yesterday! She is very sweet and very good! She's doing very well also with not having accidents, didn't cry much last night and is already accepting her crate. Lucy likes her and said, "I like this, good, great, cool, lucky" but also said, "I don't like this, silly/crazy, naughty, pet, Maggie" which translates to she doesn't like it when Maggie is silly and crazy when she wants to pet her! Because she is crazy when she's with Lu, but we are working on it and Lucy doesn't cry and isn't scared of her, and Maggie is just excited! Here are some pictures of some calmer bonding time we had this morning. My friend Shelly says puppies are good for the soul and I agree!

Sunday, January 6, 2013

Lu and her Daddy

There's not much I can say about this says it all on its own!

Lucy + her Daddy = best buds forever