Wingless.

 This little figurine used to have wings and a hand with a streamer of hearts. Until Gracie found it.
Now it is a symbol of Gracie to me. Wingless. Big Heart. Stuck on earth. "Timothy Green" if you saw that movie. Someone that just doesn't fit in. Someone I can relate to.
BUT sometimes she makes me soooooooooooooo frustrated.
She had a great day today. A great speech session. She answered alot of questions vocally! Great responses! She had a good afternoon session with her therapist, Lindsay. No outbursts of any kind.
Then I was cleaning up a special sushi dinner from Wegman's and I thought it was quiet but didn't do anything about it. Bad Mistake.
I went into the living room and she had one of her ( and my) favorite pop up books!!! and was ripping everything out of it - letter by letter. I got so mad. But I made her clean it up and throw everything away. SHE KNEW I was not happy with her. SHE KNEW she was not supposed to do that! SHE KNOWS EVERYTHING!
We had to put screws in the windows in her room so she would not be able to open them and throw things out of them!!!!
Some days I don't know what else to do.
She is so smart. I just with I could get into that brain and figure out why she does what she does.
That would make my life easier.

Who is this girl?

Gracie at Aunt Peewee's New Year's Party

making a new friend

 I don't know what happened today. Well, actually, it started a few days ago.

We went to Ocean City to spend time with our friends, the Grays, and the last time we were there, Gracie wouldn't come out of her room. She usually dreads it. But this time, there were no tears on the way. Just a little resistance when we got to the house. But she gradually came out of her shell and by the last couple of days, was wandering around the house and actually ended up IN THE KITCHEN. If I haven't explained this before, Gracie has had a total aversion to going into the beach house due to ( we think) a high pitched noise our fridge had made. The past several visits have been hellish! but I don't know what happened to make her come out of her shell. I just hope it lasts.

 It may not seem like much but for us it's HUGE!
Now for today. The last time I took her to Aunt Peewee's I had to practically drag her out of the car, crying, and she ran straight to her safe place in Aunt Peewee's bedroom and cried the whole time. So I went out prepared for war today. But when we got there, there were NO tears. She walked right in the door with a smile on her face?!?
She went to her safe space in the bedroom, but she was happy and she decided to go out of the room on her own!
I think 2014 is going to bring lots of surprises!

wearing her new pressure sleeves

Amazing Again.

We went to an apple orchard in NJ this past weekend. Gracie did pretty well except she decided to take her shoes off in the middle of the field.
But the big news is that we are 95% potty trained and yesterday was her last day with the bottle. We had been still giving her one in the AM and at night but we were finally ready to pull the plug.
Last nite I gave her her melatonin and a snack and she just sat with me and snuggled till she was tired enough to go to bed. Easy peesy.
But tonite she realized something was missing when Chris told her it was time for nite nite. I could see it cross over her mind and she tried to take us both to the sink. So Chris put her to bed and she fussed for a few long minutes but we both held out. So it can only get better from here.
Such a big girl. No diapers. No bottle.  Growing up so fast.

Joy with BFF Kyra.

New Addition.

This is the new girl. She joined our family last Friday. She was at a rescue in Tennessee. A transport brought her up to Allentown where I picked her up ( and my battery died!) So anyway her arrival was an eventful one. So far,she seems to fit really well with the rest of the nuts in the nuthouse except for one thing...
She sometimes poops in Gracie's room.

Well, it's happened two times now. Gracie has discovered Pixie's poops before I could. Twice We found her covered in dog poop. Her arms and the floor in her bedroom were the worst.  Twice I had to throw her in the shower. Twice she laughed and had good time. Right now, I can't deicide which one I want to send back!

Our family slogan is : Autism- YAY!

Longwood Gardens.

A couple weekends ago we went to Longwood with just Gracie, as Joy was at Girl Scout camp. Gracie did really well. She walked almost all the time we were there. I think she was looking for the amusement rides!

Long weekend.

This week was Pappy Angelo's 80th birthday. So we took him out to Rios Brazilian Steak house. The little girl was all decked out and happy to be so.

But things were not to go so well. 

As with all loud places, Grace got tense right away. She sat for a little while but they bring you 16! different meats to try so this was just not the right place for her. 

We didn't make it to cake, so we tried cake at pappy's place but to no avail. She was so upset i had to take her out and sit in the car with her.

We try to bring her to different places but sometimes it's not so successful.

I guess Friday took it's toll on both of us. Yesterday we just kind of hung out at home.

But today was one of the days where my patience level is running on E and Chris had to go to Pittsburgh this afternoon, leaving me with no buffer. 

I couldn't wait to get her to bed. 

I hate these days. I just feel like being at home and doing NOTHING.

It seems like a waste of a day but there is no energy because every ounce of energy left is going to Gracie in order to get her ready for bed.

I know it's as hard for her as it is for me. And she seems to be trying so hard to try and communicate.

SO when my patience does run out I feel horrible for both of us.

She has been doing so good lately too. 

Gracie's Big Day at Dorney Park.

 Today was a HUGE day for Grace! We went to Dorney Part and she had a Great time!!!!!!!

 She went on everything!

 This picture was AFTER the ride stopped.

She waited patiently in line ALL DAY and had NO tantrums or behaviors.

SHE WENT ON EVERYTHING that her father took her on!

She went on the carousel!! WE could NEVER get her on the Carousel!

 AND SHE WENT ON THE LITTLE ROLLER COASTER AND LOVED IT!!! I have her first roller coaster picture but I'll post that later. Every ride Chris took her on , she followed willingly behind him.

 The roller coaster,, the Whip, the Dragon Boat, you name it, she did it-without any fear.


She has a cold but the constant runny nose and mouth breathing and sneezing didn't stop her. Her eyes were even watering, poor baby, but it didn't get in her way of having a good time!
She was absolutely amazing.
Guess we can get season tickets next year!!!

Back to CHOP

Two weeks ago, Grace had her yearly all-around check up at CHOP, where she sees her cleft surgeon, along with an ENT, speech therapist, anthropologist, audiologist and dentist check how she is doing. The last doc was the anthropologist , who took measurements of her head. She talked to us before we left, because Grace's head growth jumped a percentile in a year. I guess the growth wasn't unusual but the time period that it occurred in set off a warning bell. So when all of the team members got together, several of Gracie's traits put together signaled a need for a Neurology exam. They were concerned that there might be pressure on the brain.
SO as per Dr. Lowe's nurse, I attempted to make an appointment with Neuro. Both the nurse and my pediatrician were skeptical that I would even get an appointment that wasn't a year away. Well, I did. For today. I thought this was great and we could start to formulate some answers. So I waited anxiously all week.
Then we got there today and the Dr. walks in and says, basically, "So what brings you here today?!" I looked at her in disbelief and related what Meg had told me. The Dr. said there was no information on her record to suggest a reason for this visit?!?!?!? I found that very hard to believe after Meg had been so thorough with telling me what they thought was going on. At least the Dr. did what the team wanted and asked for an MRI. I was so ticked off. They were in the same building and she wouldn't even make an attempt to contact them.
So I tried to talk to Meg before we left but she was in a meeting. At any rate she returned my call and I told her what happened.  She seemed sincerely apologetic and told me she would make sure they knew what was going on with Gracie. So tomorrow I schedule the MRI and then see what happens from there.
Poor kid. Hasn't she gone through enough?

FIRST day of PRESCHOOL

Today was Grace's first official day atol.Today was Grace's first official day at Preschool!She went off with her little backpack. She looked so cute. Her therapist, Miss Heather will be with her on school days but our BSC councilor, Rachelle, was there to make sure her first day went smoothly. She took all the pictures for me ( I was at home having a heart attack- well it felt like it) I couldn't relax until the half day was over.

I didn't get good sleep last nite because my big girl had a second life changing experience in two weeks. I can't say more than she is growing up, but that gave me another thing to worry about on the eve of first day of school. I was a basket case when Joy went to preschool too. Both of them cared less that I was away! But my baby girls are BOTH growing up! It's not fair!!!!

 i love the face in this picture.

 She seemed to do really well with the kids.

She loves to do her art. I have  2 artists.

 She sat down with snack and had a drink.

 The ladies tried to make sure she did everything just like the other kids. She only had a few behaviors, and she lasted the entire 3 hours.

She looked a little nervous here.

it's so good to see her fit in with other kids. Granted she is apart from them right now but it will come. Maybe speech will come with it.

We watched the movie about Temple Grandin yesterday and I cried at the end. But the end of the movie was another beginning for Temple; another door that opened. 

I think we opened a door today for Grace.