Missing Boo.

This is for me and Aunt Peewee , Uncle Roger and Chris:

There's something missing in our home,
      I feel it day and night.
I know it will take time and strength,
   before things feel quite right.
But for now, I need to mourn,
   My heart, it needs to mend.
Though some may say, "It's  just a pet,"
   we know we've lost a friend.
You've brought such laughter to our homes,
    and richness to our days.
A constant friend through joy or loss,
   with gentle loving ways (mostly)
Companion, friend and confidante,
   a friend we won't forget.
You'll live forever in our hearts...
    Our Sweet Forever Pet.
-Suzanne Taylor

I am having trouble pushing through the sadness. I can't stop thinking about how much we will miss her.
Chris built a little box for her and we buried her  at the top of the waterfall so she can watch over us.

Loss.

Today we lost our first "baby", our puppy, Sambuca. She was our baby when I couldn't have a baby , before I had the girls. She had been sick for a couple of weeks but we didn't think it was as serious as it was. She had an enlarged heart, fluid in her lungs, and pancreatitis. Buca has always been a sickly girl. We got her from a pet store. NEVER will I do that again.
It was Buca that got Chris used to having toys all over the floor. It was Buca that we bought the beach house for so we could vacation with her(mostly). It was Buca that was our guard dog, not that big thing, Tasha. We ended up sharing custody with Aunt Peewee and Uncle Roger because, ever since we left her with them to go to China to get Joy, she decided that Roger and Peewee were her "persons". Roger and Peewee got tail wags that I never managed to get.
But, I was the one who slept with her on the sofa the first night we got her... and the second and the third. I was the one who took care of her when she was sick or when she had her surgeries. I was the one who dropped her in the pet store and then cried to Chris that I dropped the dog so we had to go back and get her. I was the one who named her Sambuca before we even got her.(because she was black and we liked black sambuca.)

Buca with mighty mouse, Hershey.

I read a book by Marc Levin about losing a dog, and was deeply moved by it. But you don't realize how much they take over your life till they are no longer a part of it. There is a big cavity left open in our hearts tonight and we will miss her dearly.

who is this little girl?

Gracie does things in her own time. We have been pushing and pulling and she comes to what she has to do when she decides she wants to. Yesterday she sat with me and looked at her first toy catalog. She is snuggling with us every day. She no longer bolts off your lap when she is done eating. and she is EATING! It has taken us a little over a year to get here but here we are. She is experimenting with sounds. She makes eye contact and tries to "talk" to you. I think putting her in "preschool" triggered alot of good things. She observes. Checks things out and THEN she does when she is ready! I am so thankful for all the help from the great ladies at Advent Therapy!

Avocado!

The picture above was drawn by Joy Lin on dad's ipad. Today Gracie ate AVOCADO at therapy!! Avocado. MOM doesn't eat avocado!!! They are so happy to see her eating with a spoon. Miss Trish said dad was doing great with Gracie while mom is taking her time recovering from surgery, Today dad also got her to eat almost 2 oz of carrots- not have it go down the bib but ACTUALLY EAT it. Today she also had tummy troubles so she was out of sorts at home and at school. Miss Trish and Miss Susan got to see first hand how she reacts when she gets frustrated. She flails, she HITS and she hollers. So now we are going to work on self control! IT's never ending. Like dad thinks his stint at home feels like! He's already planning to escape back to reality just after my two weeks is up!

long time no post

Wow! Alot has happened since my last post. First we had trick or treat, then a freak snow storm where we lost power for 4 days (where we also had to crash at friendly relatives- thanks aunt Peewee!). Then we had to evacuate our fridge because everything was melting, Then I had to spend my day back home preparing for surgery( yippee) - had a hysterectomy done, came home and was feeling much better just two days later ( but I am taking full advantage of the down time)! And amid all the chaos great things have been happening with Gracie. She has started to... wait for it.... EAT WITH A SPOON! Actually it happened on the day of the blizzard! go figure.

Joy Lin is almost finished with the art class she is taking at the Banana Factory. She REALLY enjoys it and her teacher enjoys working with her. I think we are going to have to sign her up for something else! I thought she would do drama, but her heart doesn't lie there, I guess. Oh well, there's always Gracie and she is a drama queen already.!

Carrots.

Preschool agrees with Gracie. The teachers and Miss Trish and Miss Susan say she is doing really well. She is learning the routine. She does what she is supposed to do. She sits when the kids do and eats with the kids. Yes, she eats with the kids. I think the most important thing is that she is attempting communication with both the teachers AND the kids! That is so important. She seems to make more sounds after a school session. I caught the end of their class today and they sing a goodbye song to each of the kids. When they sang her name she gave a BIG smile! It is so great to see her blossom! AND FOOD! Gracie must like carrots! We started a new routine today where she takes three tastes of fruit or veggies and then gets her nutella. On her third time doing this routine, with carrots this time, she took three swipes all BY HERSELF!!! She is so smart!! The down side to this is that since she started preschool she has figured out how to open all the doors and turn the lights on and off. Oh well! ;)

Sweet, sweet potatoes

Yesterday Miss Trish and Miss Susan were so thrilled to see how Gracie is eating! She has been letting me feed food other than nutella to her with her hand.Today we had sweet potatoes and nutella ... ok, not such a great combo... but I think Gracie would eat anything to get her nutella and we'll just have to find out. But with the sweet potatoes, she actually fed herself with her other hand!!!! I have it on video to prove it. She is starting to take off. She is almost walking upright and unassisted up the stairs. She is making a whole lot more sounds. ( She said MAMA the other day) I am so proud of her!

My treasures.

Fall Festival at Advent

Today the teachers and therapists held a fall festival for the kids today and Gracie, and Joy Lin, of course, had a great time! They had a moon bounce and Gracie headed there right away. She even went in without Joy Lin! She did an obstacle course with Miss Trish took everything in! She wanted to climb in with the chicks and goats they had for a petting zoo! Today she let me feed her pineapple banana but the favorite was pear-carrot! She even ate that BY HERSELF when the nutella ran out! Every day is a learning day. Treasure every little thing!

Carrots!

Today we did Nutella and real applesauce and it went very well! It is so awesome to see food go into her mouth, and to have her LET me put it into her mouth!!! Then for dinner I did strawberry pudding as the favored food and carrots. Strawberry pudding is not as favored as nutella but it still worked and she let me put CARROTS in her mouth!!! I can say no more!

Last night we took Joy Lin to see Steven Curtis Chapman in concert in Lancaster. Chapman and his family are HUGE adoption advocates and had 3 beautiful China daughters of their own. Several years ago, they lost their youngest, Maria, in a freak car accident. Since the tragedy, the family has survived their loss through God's grace and they now honor Maria' by sharing how they overcame their pain with God's help and look forward to the day they will be with her again and also by aiding orphans in China and assisting families that want to adopt them. Joy Lin has always sung his songs so we thought we would surprise her but she figured out where we were going before we left. Just like her father. As Mr. Chapman talked about adoption I felt so blessed to have her sitting next to us. I felt people looking at her and seeing how beautiful she was. And the fact that we were lucky enough to be able to bring another beautiful child from China into our family was a double blessing. I would even be open to another child, if age and finances weren't pressing issues, but every time I say something about it, Joy's eyeballs get huge and and Chris clams up! ;) Mr. Chapman and his family show everyone that we can get through the deepest valleys and pain if we only realize that God is beside us even when we feel most alone.

My beautiful artist and the necklace she made!

something different

We did something different today. I noticed this morning that Grace would let me swipe her hand over her mouth with the fruit, which she normally avoids, if I then gave her a little bit of nutella. So at 2nd lunch , we tried it again. This time I let her eat the nutella, gave a swipe of apple-blueberry over her mouth (which she LET me do) then gave her more nutella. We did this for at least 8 or 9 times. She accepted the swipes to get the nutella. Maybe this is the start of something big?!? We'll see!

Miss Grace goes to preschool... Part 2

Miss Grace had a big day... again. She went to preschool for the whole "day", which is, well 2 hours!. They sent me away. :( Miss Trish and Miss Susan said "come back at 11:30. ( I was there at 11). Hey, I am not used to this. Gracie and I have been attached since last September! They said she did well! Only a few "moments".She made her first preschool art- a pumpkin for mom to display! I think it will be good for her to be with other kids. It wore her out! She had a nap at 3:00 for the first time in weeks! But no more naps... It's 10pm and she is still bouncing in her bed!!! Change is good. Right?

Doubt.

I don't like Mondays. Ask my husband. Joy and I like to sleep ,and Mondays intrude on our weekends. Sometimes I feel like I am not doing enough with Gracie. SHould I be doing ABC"S and flash cards ALL DAY or should we just put a spoon in her mouth like you do to babies and just go for it. Do you ever feel like you are doing the right thing as a parent? Should we be farther along than we are now? Would she be eating more if we had gone in the other direction? What do people think when they see her and she doesn't talk to them like they expect her to? I know I shouldn't let these things bother me and normally I don't but today is a Monday. Don't take this the wrong way. I believe in what we are doing. I just wonder sometimes, is it enough? I made an appointment for an evaluation from a developmental pediatrician recommended by my pediatrician and that isn't till January....2013!!!!!!!! THey told me it would take a long time to get one, so get one just in case.... If there was a problem, wouldn't that be wasting valuable time to work with it? it just doesn't make sense. But that is the system, and now with the new "healthcare" it's just going to get better, right? Right. It's hard being the patient one all the time.

Miss Grace goes to Preschool.... for a day.

Today Grace did something different at therapy. She played with marshmallow fluff and cheeze whiz (what the heck is that stuff made of?) but that wasn't it. She played with the kids on the swings. But that wasn't it. She joined the preschoolers at Advent for the last part of their day !!! and she LIKED it!!! She joined them for snack and then crafts and went with them to sing their goodbye song!! She had a great time! and then she was happy the rest of the day! I think this will be coming in the very near future!

We also had an impromptu feeding session today. I had sat her down for banana pudding and went to clean her up and get her clean clothes to wear. Evidently she wasn't done. I had left the pudding on the table and when I came back she was actually eating the pudding... as well as making an impromptu art work... on the table.

Ups and downs.

Since my last post, we have not repeated the great experiences of that day, which I was told to expect. But there have been changes. Positive: Gracie said "EAT" when she wanted her bottle the other day, repeatedl. Not positive.: On the other hand, she won't make the sign for more to tell me she wants more nutella even when I know she knows how and when to use it. Positive: She is getting better at putting whatever is on the tray in her mouth, even if it is just a little bit. She likes STRAWBERRY PUDDING. On the other hand, she has been throwing wilder tantrums when she doesn't get what she wants right away. Positive: She took me to the refrigerator for the first! time today. I couldn't figure out what she would want. Then she pointed to the CHOCOLATE MILK!!!! You could have knocked me over with a feather!! I had to warm it up pretty much, but still. Not so positive: she sometimes has a fit if she doesn't get her nutella. Miss Trish says that is "normal behavior" - wanting a preferred food. So I guess that is ok but Miss Trish isn't around for the tantrums ;) Positive! She is starting to snuggle more with ME!!!! I wasn't feeling well this week, so I want up to my room when Chris came home. She wanted a bottle so Chris made her one. She took it from him and took it all the way up the stairs to sit with me!!!! This makes me happier than I can say! Also she is staying on my lap for longer periods of time.

Keep Moving Forward.

There have been lots of things going on since my last post.
Take a look at the plate in that picture. There is no chocolate on it!! and that is just the beginning (well, actually the end.)
Gracie wants to "eat" ( such as it is) more than the bottle now. This morning she took me to her chair rather than giving me her bottle, which showed me she wants, well, her nutella or food before her bottle.
Today, she 'ate' one container of chocolate pudding. The WHOLE container. Ok, i would say maybe 2/3 of it actually got in the mouth and stayed in. But she kept putting it in like there was no tomorow. Then she eats the puree on her plate by default when she finished the pudding.
But wait, there is more....
Chris was complaining that she can't be like her mother and only eat chocolate... so I tried vanilla pudding and her favorite hawaiian puree and....
She downed the WHOLE container. Again, quite a bit spilled out but she kept putting it in!!!!!! Then she swirled them and ate the puree as well.!!!!
Oh and I almost forgot.
Since last nite, she has not had FORMULA but instead she has been drinking warm SKIM MILK and carnation instant breakfast mix!!!
Miss Trish , You should be proud!!
Oh and on top of all that we found another "like"- strawberry creamcheese!!

Every little thing she does...

Just a little thing. Gracie dipped her finger in the fruit container and put it in her mouth. Honestly, I don't know why anyone would read this blog. All I write about is Gracie and what she doesn't eat and then put these horrid pictures of this messy child. But with Gracie every little thing she does is a big step.
I never realized how much little things that we take for granted amount to big things. Gracie makes eye contact with me all the time now. Just a year ago , I was lamenting that she never looked at us! Now whenever she sneezes she runs up to me with big eyes and a smile and I say "God bless you, Gracie! You sneezed!" For some reason, it tickles her when she does and then she tries to force one! She is so funny. She made a face on vacay that made all of us laugh and she did it 2 or 3 more time so we wouild laugh at her! I think I have a class clown on my hands.!

Interesting.

Tonight's "dinner" was a little different. On the menu was banana blueberry puree and strawberry banana chobani ( because the Greek yogurt is supposed to have more protein- too bad it doesn't have better flavor> Why can't someone make yogurt that doesn't taste like yogurt?) So there is no nutella here so what happens?
She goes for the darker colored berry banana first. Then she tries the yogurt ( likes the texture, not the cold) . Next the BB makes it just into the mouth. She puts the tip of her thumb in and just touches her teeth but it's in. As she tastes it, she CROSSES HER EYES> I tried to get a picture but I don't think I got it right. Too funny.
Next she tries the yogurt. Not as successful as the BB puree. Crossed her eyes again. Now comes the mash up! She is going to have the softest skin because it's all over her arms and her hands. By that time, I guess she's done but she tries another swipe with her hands.
I think I am going to video dinner everynite and post it or better yet, stream it live! It could be better than the evening news!

Vacationing with kids.

Even when it was just Joy Lin, vacations were somewhat of a challenge. At least for the first day and nite. So we had no idea how Gracie would do on a short trip to Williamsburg VA last week. It turns out, she did just fine. Except for the first nite!!! and the last nite. So it wasn't too bad at all.
It also turns out she is a trooper when it comes to following her father around an amusement park. We tried a few rides and that didn't go over at all. But she hung out in the heat in her stroller and managed to stay most of the day( or until mom said she had had enough!) Then we went to the water park the next day and she didn't want to do anything again. I felt bad for her because she was just watching everything. Then Joy Lin found a lazy river "ride" that we all could go on. It was just 4 ft deep and you just floated around a track like a piece of paper till you wanted to get out. Gracie loved it! She even loved getting water on her face! So Water Country USA turned into a hit!
We went to dinner twice and Gracie sat nicely at the table and "ate" her nutella without grossing too many people out. She did really really well. Miss Trish was very proud when I sent her a picture!
So even though Chris broke his ipad and lost two credit cards it wasn't a bad vacation at all. Both girls and dad had fun.
It was another big step for Gracie!

Eating out.

Tonite was the second time in a week that Gracie went to a restaurant with us. Let's just say the first time didn't go well. so much so that I was afraid to go on vacation this week, We got to Williamsburg VA in the afternoon and did a little shopping then found a place for dinner. At first, I thought we were in trouble. But I got out our new travel nutella and dinner was saved! She sat in her chair and ate nutella on a plate and didn't even make a mess or a noise. Top that with being an angel on the way down and we just might have a good vacation!

Pudding.

It turns out our girl has a taste for chocolate. Who knew? Nutella, Hershey's syrup, and now pudding. Not just chocolate pudding but DOUBLE CHOCOLATE pudding. On tonight's tray was the aforementioned pudding and pear blueberry fruit puree. At first the thumb went in and she wasn't sure because it was cold. But the thumb went in again. Then she started to fingerpaint, sort of. But that meant the fruit was mixed with the pudding and by the end of dinner she was swiping her HAND across her mouth!!! I am guessing she liked it! It wasn't pretty but it was a success!!

The artist in the family.

Joy Lin is our artist. I began drawing for her when she was little at restaurants to keep her occupied during dinner and since then she's left me in the dust. I have to have a picture to work from but she can draw things from her head. I am going to try to get her a job drawing coloring books for Hasbro and the Littlest Pets. Hasbro owes us for buying so many ponies and Little Pets anyway! ;)

Feeling like a balloon.

I went home after therapy with Gracie feeling..."deflated." Chris said I had my three days to bask in her success and now it's time to get over it and move on. And at therapy, sure enough, it was just that. Ok. I know there is along way to go, I guess I just wanted to savor the moment a little bit longer. We are going to limit the nutella, obviously. It crossed both of our minds that it would not be good if she decided the only thing she wanted to eat was nutella. But now I have to withhold it. And she is not eating anything else.
It sounds like I am complaining. I'm not though. It's just sometimes I feel like I am on a treadmill and not really moving. But I know Gracie's battles are small compared to some other kids. Even when I was with her in the hospital after she had her palate repaired, I was aware that there were some parents how had to spend days and even years in hospitals with their children. Gracie is not malnourished. She is happy. She is healthy and she is ours. SO we just keep going one day at a time and take the successes with the bad days!
Today was a bad day. So we take one more step and keep working tomorrow!

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!!!!