a Good week?

We had two good therapy days this week and our OT Tricia even thought we had a breakthrough on wednesday. Tuesday the summer kids went to the park and we tagged along with them. Gracie liked being outside but wasn't sure about being in a new place, but she and her new friend, David, went on a walk and Gracie didn't even tire out on the way back to the picnic table. ( Of course, she was on her way back the way we
came, which to her means going home!)
Joy Lin did really well helping with the other kids. She is a social being, so her being around the other kids helps them to model interaction with their peers.
Wednesday Tricia was excited that Gracie allowed her to touch her face and do a deep facial massage of sorts. Then she did the same thing to my face on her own, with both of her hands!
And tonite, when we were having dinner, she bathed herself in Nutella and oreo crumbs;let me lick the crumbs off her fingers and Licked her hand, which was covered in it, TWICE!!!
Yeehaa

From Lilo and Stitch-
"This is my family. I found it all on my own. It is small and it is broken... but still good. Yeah. Still good"

A good day!

Tonight was really interesting at dinner. We had hamburgers and I gave Gracie a plate with nutella ( wow is that stuff good!- who knew!) , whipped creme and oreo cookie crumbs! Well, she became Picasso of the plate. She had her HANDS(both) in everything! I managed to get some near her mouth and she tolerated it! It was awesome! !!! Dad was not overly comfortable with the mess but who cares? I cleaned up!
AND while we were AT THE MOVIES (YAY) - We took her to Cars 2 to see how she would do. She ended up falling asleep but she did good overall ( don't get me wrong- Falling asleep is good). She fed Chris and I popcorn right out of the bag!!! Put her hand right in the bag OVER and OVER and also fed us M&MS.! THis is HUGE! SHe is getting so comfortable with both us and food!
It was a good day!

What a day!

We went to CHOP today for what I thought was a check up and it turned out to be a TEAM EVAL for Gracie. I guess I forgot this when we made the appointment 6 months ago! silly me. The first challenge was Gracie's reaction to examination rooms-- SHE DOESN"T LIKE THEM> So I am told that we have to see like 6 other people after Gracie has a meltdown with #1 and my husband is in Ohio!!!! Ok Now Gracie isn't happy and mom isn't either. After a hearing test and being told she really should get a "sedated ABR"test because her lower tone hearing is questionable, we head back to the nurse's station where I find out she has 6 more people to see. This is not going to work. So I ask the nurse if we can break up the schedule and try to get some in on another day. She knocks it down to 3 plus the surgeon who we came to see in the first place. Ok, I guess that's better. It turns out that Gracie got BETTER as the day went on after spending some time in the waiting room. The only problem was that, since she is finding her voice, she would let out these happy SHRIEKS every now and then that everyone in the hospital could here. I guess things could have been worse.
I have to give two shout outs! One to my niece, Savannah, who came with me as an extra pair of hands and ended up being moral support and a great Gracie-chaser!
But The Shout Out of the Day goes to Joy Lin for being a great Big Sister and not making her mother crazy! She wore out the battery on my iphone playing games, but even after that died , she kept herself occupied and they both hung in there as we got snarled in RUSH HOUR PHILADELPHIA TRAFFIC that REALLY SUCKS. ( Sorry for that outburst but IT DOES)!
Joy Lin surprises me everyday about how grown up she is getting. I still think of her as Gracie-size sometime and she has come so far into being a young lady! I can't believe how fast it happened though! She has to slow down before she runs me over.!!

Feeding other people.

While we were at the beach, I noticed that Gracie is becoming a little more relaxed around food. I was eating a sandwich with a few chips on the side and she came up and grabbed one, without any coaxing, and put it in my mouth. She laughs when I make them crunch. But she touched the chips all by herself. Then we were eating ice cream cones on the boardwalk and I ate mine right in her face. She made mouth movements like she wanted to lick it. Then she started to feed it to me and I made the cone crunch and she laughed and laughed. She did the same thing with Chris. But she had no problems feeding any of us, including Joy's Bff, Rachel who was staying with us.
At therapy this week, it was a little difficult after coming home from vacation. But we did decide to use the Listening Program with eating at all meals but the family meal, because it seems to calm her. At Advent, their main concern is to get and keep her trust and this is huge in regard to advancement.
Another thing I noticed while on vacation is that she seems to be coming to me as a source of comfort now. I still can't get her to relax in my arms but she is relying on me to help make it better. AND she came to me a few times and just sat on my lap for a while and played or just sat with me and even brought books over to me to "read". I think we are making steps forward.

Didn't like the beach but...

Well we had a nice vacation but I wish it would have involved less WORK. It's not easy getting everything ready for the renters. I feel like I need a vacation from my vacation.
Gracie didn't like the beach, but we did find something she liked.. Being in the pool! We would start off in the baby pool and then off she would go to the big pool. Our community pool has these ridiculous Nazi-like rules. They have "Adult swim" for 10 minutes every hour on the hour. So all the kids have to get out of the pool. And usually there in only 1 or 2 more often than not 0) adults in the pool. But if no one is in the pool, the kids still HAVE TO WAIT. It's ridiculous!! Anyway, Gracie does not understand ADULT SWIM. So we would have to direct her back to the baby pool. Luckily, it worked out pretty well. She would wear a floater that was APPROVED BY THE POOL nazis and Chris would take her around and she loved it. Chris had started to let go of her, to let her float and she would wiggle her legs to get back to him. By the last day, she was floating by herself and floating off AWAY from her father.!

First time on the beach.

Gracie's first time on the beach wasn't the best but it could have been worse. She has been coming to me to sit on my lap alot lately so I took the time today to have "story time" with her. I started to tell the story of a little girl and her first day at the beach but it turned out to be telling her story as she might have told it.
"These crazy people I live with took me to this place called the beach and I had to walk in the hot stuff they called sand that got stuck in my shoes. Then they picked me up and took me to this roiling water they called the ocean to get my feet wet. Well, not only did my feet get wet but I came up and covered me and then I got all wet and got some of that scratchy stuff in my diaper. Yuk. (Here she laughed like she understood what I was saying) Then I decided that I had enough and decided to go back the way we came in. But they kept picking me up and taking me back to the blankets. Well, after 6 or 7 times, I got really fed up and decided to pitch a big loud fit. (here she laughed again). Well, that time it worked and they packed everything up. And then they had the nerve to make me walk back through that hot scratchy stuff to get to the car! Oh man."
It just struck me how she laughed almost on cue! Life is always interesting with Miss Grace!

Big Sister!

My poor baby Joy Lin noticed that all the posts here were about Gracie.We went to Old Navy last nite because Chris said they had good sales. Well, maybe in the mens department... But we went to buy clothes for Joy and my tendency is to still think of her in the big Little girls department. Well, this fall we may be shopping in the JUNIOR department. WHat happened to my wee Joy? I keep telling her to stop growing. She thinks I mean getting bigger, when I really mean is STOP GROWING UP SO FAST. Ever since we came back from China last year she just seems so grown up in all ways. Having Gracie makes me realize how much I didn't appreciate with Joy Lin when we had her. She was our first so we were nervous. But she is such an original girl. She is unique, like her name, even if she doesn't like it. (Mom, why do I have to have two names?) She is so outgoing ( something I am so glad for because I am not)! Everyone knows her.
I guess the best thing I could ever be is to be "Joy Lin's" mom! ( and Gracie's too)

Not a "shoutout' kind of day

As good as yesterday was, today was really BAD. From the moment we walked in, she was off key. She started to gretz at the table and didn't stop. Before the final feeding, I really couldn't get her under control. Trisch tried. I tried. By the end of the session, she wouldn't listen to anything. These times make me feel like I am back in the "fishbowl" that was the dining area of the restaurant in China. There, no matter who it was, white or Chinese, if your child was screaming and you couldn't calm them down, you were a BAD PARENT> at least that's what you felt like because every EYE was on you. Now, it's not like that at Advent at all, but I FEEL like the bad parent. I know Trisch and Susan and Carey Anne have seen all that and more but it still makes me feel like I am not doing the right thing. It's just me. BUt before my nephew came along and I became aware of autism and Asperberger's Syndrome, I must admit I would be one of those judgmental parents. I have come to understand, first hand, that when someone's child is acting out of hand, it might not be something they, or the child, can control and not "bad behavior" at all.
Chris said the other day that he wished we had gotten her when she was 1, not just to have had her earlier, but so she wouldn't have been neglected for so long and not been able to get the attention she deserved. But all that matters is that she is here now. We will get through it all and in 6 or 9 months, we probably won't be able to recognize her.

Dad gets a "taste" of therapy.

Over the weekend, Chris had an idea about Gracie;s feeding therapy. I managed to get three passes of applesauce in her mouth and she made such dramatic faces. So Chris suggested we try to feed her only rice cereal with formula in it , because she seems to be having trouble dealing with not only the texture but the taste of the applesauce. So I actually managed to get him to come with us to therapy today and we ran it by Trisch. Her first feeding went well ( no trauma) so we tried the next feeding with the cereal. I made it in front of her with formula from her bottle and she did not take her eyes off me or it as I was making it. I told Chris it was his turn to feed her. We alternate one time of her "feeding" us and then it's her turn. So he offered her the spoon and she made him eat her cereal! It was classic. I have to learn to have the camera when we do these things! Well he ate it!( and was not happy about it) But then he put it on her hand and she got a little in her mouth and she was ok with it. She even put it on her face. (Trisch says this is good.) So we may be on to something. We'll do this know everytime we sit her down to eat ,so we will see where this goes.
I have to give Daddy a shout-out for having a good idea, coming to class and especially for taking the big spoon full of rice gruel! Way to go dad!

Gracie has been talking up a storm since last week. Well, not talking but making alot of new sounds. It sounds like she's trying to talk. When we do her Listening Program, instead of sitting on my lap with her back to me, she turns around and faces me. She is looking me in the eyes and watching my mouth move.
She found something else she likes almost as much as her swing. Almost. At the beach, she decided she liked the pool. We put her in the kiddie pool at first, but by the second visit, she headed for the big pool all by herself. She sat down, pulled off her shoes and
would have walked right into it if her father hadn't been right behind her. Her sister never had any fear of the water either.