I guess do what works:12/20/10

On Monday we went to a benefit dinner for Justice for Lily. There were quite a few people there but we sat at our own table and it was kind of off to the side. I could tell Kenz wasn't fully comfortable. We kept noticing her sliding down in her chair. When asked to sit up, you could tell she just didn't want to. I bent over and asked her what was wrong and I got her deer glare and I could see her playing with her tag. Kenz's comfort tool is playing with the side tag on a shirt. She just will rub it back and forth between her fingers. She told me she liked the floor. I had asked her if she felt more comfortable down there and she said yes. We allowed her to sit on the floor underneath the table(she was done eating). She just sat there smiling away when I would look at her. She was playing with her camera some of the time but she just sat there content.

Holidays are a time of...........anxiety

The latest we are supposed to be working on with Kenz is making her buy things from the store. Well right now going to the store can be a nightmare for her with all the people

Dance fail

I was finally starting to feel great about Kenz being in dance and loving it. I had to make the decision back in October to order her pricey dance costume, which I did. In the beginning of December it was observation week in class which means all the parents and whatever other family members want to are welcome in the classroom. Kenz was super clingy and just didn't want to do anything. They did a cool project where all the kids did a paint hand print on the door with their name under it. It was so neat to see all the kids' hands, well all but Kenz's. She just lost it when it was her turn and wanted nothing to do with it. Nothing to do with the paint, nothing to do with the class, just nothing. She wouldn't talk to any of the girls or even look at them.

I was hoping next week things would go better for her in dance. I figured it wasn't observation week so hopefully she would be back to regular Kenzee, the one who was beginning to enjoy dance class. Nope. Usually if I sit behind her she will participate. She wanted nothing to do with class besides sitting right next to me holding hands. This week I had Jaxon with me so it was difficult for me to get really involved. I tried many different things to get her with her classmates but I could just feel her anxiety raising and I knew I had to back off. I was instantly saddened because she was making such great progress before and I was feeling like I was losing that. She does the dance moves and songs at home constantly. However only Fred and I see that, I want her teacher to see the love she has for dance. Some days I just wish the world saw the Kenz I got to see at home

Being Thankful-lessons learned from children

This year I have learned so much from the beautiful children that surround me. I never thought my children and ones around me would change me the way they have.

Kenz has taught me to not take the little things in life for granted and the little things in life is what makes you happy sometimes. I would have never thought seeing her talk to another girl in dance would make me cry or playing outside at daycare with her friends. There are still times when Kenz having SM can be frustrating but I always step back and remind myself that it takes time. I know Kenz has so much to share and tell the world but right now, I have to help her do that. She has also taught me to not be so quick to judge others. One of the hardest things of SM is not everyone understands it and physically looking at Kenz, you wouldn't guess something was wrong. I find myself explaining to people a lot about Kenz. Strangers will come up to her and talk to her and then they find it rude when she ignores them and hides her face. I've had people withhold thing from Kenz until she says thank you or please. My first reaction is leave her alone and get out of her face!! But I remember she doesn't walk around with a sign around her neck explaining herself so I cannot judge others who don't fully understand her.

Jaxon oh Jaxon. I'm so grateful for carrying you until 38weeks. It was wonderful to enjoy a fullterm pregnancy. I cherished everyday we made it past 31wks. I am also thankful I was able to hear you cry after birth. It was the greatest thing to see a crying baby(who wasn't blue) and being able to kiss your forehead. Then around 3wks old you threw me through some hoops. The nurse literally running with you in her arms screaming for a respiratory is burned into my mind. We went through many obstacles while you were hospitalized for 3wks. When I had you fullterm I thought I would never have to deal with the ventilator and all the IVs because you were fully baked. But you showed me wrong. You might not of been born blue like sissy but I seen you go blue one to many times while in the PICU. I was thankful for the knowledge I gained from Kenz' NICU experience because it made the coping with Jaxon's PICU much easier. Seeing you take your first breath of the vent was amazing! I truly cherished the first moment I was able to try and breastfeed you again. Even though it was difficult because your throat was so swollen and you had an NG tube for 3wks, at that moment I knew everything was going to be okay and I had something the drs couldn't give you. I had the wonderful mommy milk and the comfort of nursing in my arm.

On November 20th 2010 I received some devastating news that a girl I knew from LLL meetings had lost her daughter. This was hard to hear especially since it was from abuse. Lily's death made me realize I sometimes take the little moments with the kids for granted. It reminded me to be more patient with the kids and to always live in the moment we are in. The night Kenz came home from OK she didn't go to bed til 1030(usually in bed by 830) and she wouldn't sleep by herself and then she woke up at 330am. Usually I would get frustrated because during that time I would also be woken by Jaxon to eat which means I would barely be getting any sleep. But instead of getting mad I enjoyed my cuddling on the couch with Kenz as we watched cartoons. I enjoyed her silly moments and hearing her laugh.

From all of these I have also learned to have more trust in my faith.

11/17 and 11/18-BIG week for Kenz :)

This week Kenz made me cry but not out of frustration or anger but of her accomplishments. At therapy we decided to walk over to English Gardens, its a small nursery next door that was all decorated for Christmas. The goal was just to walk around the store and the dr and I take to Kenz and see how far we could push the limits before she pushed back. Kenz was in awe when we walked in! There were Christmas trees, lights, ornaments, fake animals, and other decor all around the store. We would ask her what things were and see how close we could get to strangers before she wouldn't talk. I learned more about her comfort hierarchy being there. Kenz loves animals so talking about the animals that were throughout the store made her feel more comfortable. She did great and continued talking about things through the store. Her dr was so proud as was I

I knew after therapy that this week at dance I really needed to work on moving away from Kenz. With therapy I have learned way to help make Kenzee more comfortable in a room. Little things that I would never think about before. Such as not being by a door because seeing people pass by or being in the front of the room because seeing people pass by or look at her will create more anxiety. So when its time for her to find her sticker she always picks the back corner sticker. As we were warming up I would slowly inch by inch step away from her. She noticed after a couple minutes and came to me. So I took her back to the sticker and waited awhile and then started again. I was able to get almost to the other side of the room without her. She loves doing somersaults at home but is not as interested in them at dance. So when it was time for the mats I told her to stay by the wall with the other girls who were waiting there turn. I again slowly inched further away. After a while two other girls sat by Kenz and started talking to her about her leotard. She smiled and pointed to a heart that was on it. She was nonverbal with the girls but was smiling away and laughing with them. She instantly brought tears to my eyes. She was making contact with the girls that she talks about nonstop at home. I even took another girl to the bathroom and Kenz was so content she didn't realize I was gone. The teachers even recognized how great she was doing.

11/10- It's time to push the limits

After us being in the room for a while and Kenz was fully warmed up, her and her dr went on a walk down the hall. I stayed in the room but I could hear her being happy in the halls. She let him pick her up so she could get a drink. He was so thrilled with how well she was doing. When they came back in the room she told me all about their little walk, the best part was she was excited.