An Amazing Weekend.

What an amazing weekend with Gracie! She sat for me for 40 minutes on Friday nite and ate nutella by consistently putting it on her thumb and putting her thumb in her mouth! Then Saturday she declined the bottle at one point and asked for the nutella. Then today, TWICE, she wouldn NOT take the bottle and took me by the hand to the where she knew the nutella was.
Before we put her to bed tonite I was going to give her a bottle but Chris had the nutella out and she saw it and wanted it. So I sat her on my lap and watched her clean the plate off with her thumb. I watched as she did this again and again till it was mostly gone! I was awestruck. She has come SO FAR from where she was when we got her almost a year ago! Even in the 6 months since we started working with the therapists at Advent, she has come so far. She actually looks AT me now and I so wish I knew what was going on in her little head.
Nutella. Who knew? It's a big start on the long road ahead and we still have far to go, but it's a START!

Warning! This video is not for those with a weak stomach!

I am posting this mostly for Chris and Gracie's therapists, Carey Anne and Tricia! It's not something for the feint of heart to see!

yip yip yahoo !!!!!!

Wow! Gracie blew me away at dinnertime tonight!. At first she brought me her bottle to tell me she was hungry. I put the bottle aside and went to get a plate for food for her. Tonight's food was nutella, apple blueberry baby fruit and chocolate crumbs. Well, the little one got impatient with me because I was taking to long getting the plate together! She wanted her nutella! I sat her in her chair and she dug in. She began by putting her thumb in the nutella and then putting her thumb in her mouth!! She seemed to be doing it all by herself so I just let her do her thing. I can't count the times she put her thumb in her mouth with the nutella on it, Miss Tricia and Miss Carey Anne! She sucked it off her finger and her lips! When I thought she was done, I took the plate and her tray away. She wanted something , but I didn't know what! So I asked if she wanted the bottle and..... she PUSHED THE BOTTLE AWAY and reached for the nutella container!!! I almost fell through the floor to China!! So I sat her back down and put the nutella on her tray and she went at it. There were several times when, after putting her thumb in her mouth, she smiled ! She must have sat and played and "ate" for at least 40 minutes altogether! Finally, she wiped her hands all over her face and I took this as a sign she was tired and finished. She looked like a chocolate bunny! (See picture)
Nutella where have you been all our lives!!!!!

slowly slowly

Today was a good day for feeding. We had a home visit and we were eating at the table outside because it was so nice in the morning ( as opposed to the 100+ temps of last week!) The second feeding session lasted at least 20 minutes!!! with Gracie just digging into her nutella and having a great time. Tricia was feeding her from her finger, which seems to be working better than the spoon for now. She was just keeping her finger in front of Grace, not forcing anything, and eventually Gracie actually put Tricia's finger in her mouth!! You could have knocked us over with a feather! She also put her own finger, with nutella, in her own mouth at least 10 times!!! Nutella is great!!
Naturally, my solo session in the evening didn't go as well. Hershey's doesn't stick to the finger like the nutella! But as you can see from the pictures, it didn't go badly. She's so much more comfortable. Now it's just a matter of getting more into the mouth eventually and getting her to realize that that stuff we put in front of her to play with actually helps her tummy to feel full!
She also signed for more several times today! She was frustrated because Tricia wasn't pushing her on the swing so she eventually did the sign for more! Also I bought her and Joy books at Wegmans today and when I took the book from her to pay for it, she gave Joy the sign for more!! Whoo hoo!

Gracie LOVES the pony-in-the-box

Joy turns 9 and Gracie turns off.

My big girl turned 9 today. 9. What am I going to do when she turns 19? it's so hard to believe that she came to us 8 years ago. Those 8 years just whooshed by. In a flash, she lost that baby look in her face and started to look grown up! Just like that! No warning, it just happened. I still wonder where my little girl went. She asked my if I really meant it when I tell her to stop growing-do I want her to be a baby like Gracie? I told her that all I mean when I say that is I wish I could slow down time so I can keep these moments a little longer. I found out just how quickly that innocent sweetness can be squashed by reality and I just want to keep the bubble there a little longer. Happy Birthday to my Joy. I missed one year of her life but I plan to make up for it for the rest of her life!

Daddy got his hands dirty at therapy today with Gracie. He tried to demonstrate his past success with Gracie to Tricia, naturally without as much success. She recovered her balance in the Moon Bounce and then came in for round 2 of feeding. We decided to not put any pressure on the second time, because she became pretty stressed in the first. Well, today she had a Hershey's syrup and oatmeal facial and full body scrub and she loved it! She actually dipped her finger in the hershey;s and put it right in her mouth herself four or five times!!!! She likes when Tricia gives her a deep massage with the syrup and then allows it to go on her face and in her mouth. It's amazing and DAD even got HIS hands DIRTY! Miss Tricia ( and mom) was amazed!!!
Then we had a meeting with Carey Anne, Tricia, Advent's dietician and house Doctor and another doctor to see what the next step is with Gracie. I am too tired to write about that now, so I'll do it tomorrow but I want to write down how Gracie reacted to Joy's little birthday celebration at Chuckie Cheese.

Joy Lin LOVES Chuckie Cheese so we took her BFF Kyra with us to celebrate since Dad had to head out for a class that had come up. Gracie was taking everything in. All the NOISE NOISE NOISE NOISE ( as the Grinch would say) and the lights and at first it was ok. Then Dad took her to try one of the kids rides. She came back crying. I don't know what set her off. But it all proved to be too much stimulation and she started to shut down. I covered her ear and she snuggled up in my arms with her blanket and she fell asleep. This is her defense mechanism when things become too much to handle. I felt bad for her. ( the funny thing is it's the exact way I feel when I go to Chuckie Cheese!) She did it when we first started at Advent and hasn't done it in a while but I know that's what she was doing.
Each day is a new experience for both of us!! Actually All of us!!

Daddy ate applesauce with Gracie!

Well, we took a first step tonite. I have cut down on Gracie's bottles a little and we had a landmark event after dinner. Chris sat down with Gracie and fed her applesauce, sort of. Miss Carey Anne said now "feeding' has to be reciprocal. So Gracie gave Daddy one, then two spoonfuls. Then Daddy said it was Gracie's turn. Then the spoon didn't exactly go IN the mouth but it got close and applesauce WENT IN. Not once, not twice but 5, maybe 6 times!!!!!! and the best part....... There was no drama! No complaining !no crying!!!! Just Gracie and Daddy eating! Since he goes out of town Tuesday, he will be joining her again at the table for something else! Then I will be on duty!
YaY Gracie! YaY Daddy! Daddy is a rock star!!!!

Moving Along.

Today Miss Carey Anne came over for dinner and was surprised at how Gracie did during dinner. She was very pleased with her progress. She and Tricia feel that we are ready to move on to the next step,
Deep Breath.
We need to make Gracie feel hungry. We need to cut down on bottles.... to get her to feel hungry.

Right now I am not sure how I feel about this. Chris says fine ( as long as he is out of town when we do it.) I feel that we need to go to the next step. I am just not sure if I am ready.

I think I might need lots of help with this one.

Day to day developments.

Today Gracie's Aunt Susan and Rachel Gray came up to visit. The Gray's adopted Rachel when we got Joy Lin and we have all been BFF"S ever since. Being that they don't get to see her that often, they were amazed at how much Gracie has changed. There were several new twists that I wanted to document today before I forgot.
Cognitive Development: Gracie has a habit of breaking through the baby gate that is supposed to keep her out of the front of the house. She goes into the dining room and stands on the table and bats at the hanging lamps like they are a mobile. NOT TODAY: Aunt Susan watched her break into the front rooms but we watched her the whole time and told her NO> The hands went behind the back, the eyes went up to the ceiling and the classic " I didn't do ANYTHING" rolled across her face. It was truly classic.
#2-Chris took Gracie up to the swing and she gave him the sign for "more" WITHOUT BEING PROMPTED!!! Yippee!!!
#3- Later we were all too tired to go up to the swing with Gracie the last time she wandered up so her dog, Tasha, followed her faithfully. She waited as Gracie made her way slowly up the hill to the swing. Each time we take Gracie to the swing we throw the frisbee for Tasha. On her way to the swing< Gracie found one of Tasha's frisbees and actually gave it to her!!! She knew what to do with the frisbee even though she didn't know how to throw it!
Sometimes we don't appreciate all the little things that happen in the course of a regular day.
Tomorrow should be fun! Miss Carey Anne is coming to dinner!! I am sure that will be exciting.

Today Gracie was giving me one of her wining cries while I was trying to figure out how to print invitations for Joy Lin's party. It went from whiny to drama because i was ignoring her so I got up and gave her two of the picture cards I had made for her to choose from. ( I took pictures of family and basic things around her to use as flash cards of a sort). I showed her one of her bottle and one of her favorite dvd and she picked the bottle to tell me she was hungry! My goal is to get her to take the cards herself and show me what she wants since she doesn't have her words yet.
We took the picture above after watching The Hangover. She really liked the music. But I have never seen a person's eyes glow like that. My dogs, yes. Cats, yes. Gracie, yes. Sometime she does give off this other world-ly vibe. It makes you wonder.

A note for anyone who might read this blog: Drop me a note and let me know your thoughts! I found out recently an old friend from high school follows and some other people have surprised me, so please feel free to share notes and thoughts! Thanks for following!

Baby steps.

Just this morning, Gracie and I had a little back-and-forth play with a ball for about 3 minutes! I was so excited! She bounced it back to me and even caught one! It was a big step from where we started but it was such a little thing. Sometimes I still take for granted things she should be able to do that a "normally developed" child younger than her can do. So the small achievements seem HUGE! and they are truly valued, where I may have missed these little things in Joy Lin's development.
Another BIG step was bouncing ON HER OWN in the moonbounce they have for the kids at Advent. Tricia took her in by herself to just get her to be unafraid. Then Tricia stood up and started bouncing slowly, while Gracie was seated. Well, the bumps began to tickle her belly and then she was all in. The bounces got bigger and the laughter got bigger. Then Tricia stopped. Gracie still wanted to go so......she stood up while Tricia laid down. Then she started to JUMP! all on her own!! and Tricia let a secret smile go on her face! Success!!! Then we went inside for more feeding therapy and had a total meltdown. oh well. One step forward....
Gracie may have a peanut allergy. She likes the texture of nutella so we thought we'd try peanut butter and she put her arms and hands right in it but she got a rash on her arms, that went away when Tricia washed it off so I am not sure yet. One more thing to observe and check out.
She had a very busy 4th of July! We went to her Aunt Angela;s house for a picnic and play in the pool! She made a beeline for the pool from the moment we got there and pretty much stayed in for the entire time we were there. She only came out with a fight.It's a good thing we don't have a pool at home! We then stopped at her Aunt Peewee's where she got her second wind. She was outside exploring everything. Then we went home to meet up with Joy Lin's BFF Kyra and her mom to go to the fireworks in Bethlehem. Gracie was walking around before they started, checking EVERYTHING out.When the fireworks finally started, she sat on daddy's lap with her headphones on. The look on her face was .... WHAT THE ... then she fell asleep. Overall, she did really well!