Braska Bear

It's a big day for me!! One year ago I had my heart fixed! Can you believe it??!?! It was a scary day for some of us, but it was a happy day for Mommy and Daddy because they knew I was gonna be all better soon. Here's what I looked like right after surgery. DON'T BE SCARED! It might be icky, but I think it just shows how far I've come!! Mommy and Daddy really like this picture because they were so glad to see me all fixed that they weren't even afraid of all the tubes and wires. Now, Grandma C, on the other hand, she didn't like them so much... But look at me now!!! Happy as a little clam with all kinds of silly energy! Here are the posts from my hospital stay, in case you want to see how good I did and how fast I got better. 2/28/07-- Midway update 2/28/07-- My thoughts about things. 3/01/07-- The morning after 3/01/07-- End of Day 1 3/02/07-- Mid-day 2 3/02/07-- End of day 2 3/03/07-- O2 free on Day 3 3/03/07-- End of Day 3 3/04/07-- Good morning, Day 4 3/04/...

Mommy's sick today, really sick. So she can't even hold me or anything. Daddy helped me get my story ready today. Here's what I did. ~~I went to work today with Daddy. ~~Miss Yolanda took me around to visit all sorts of people. ~~I saw my friend Miss Cathy. ~~I met Miss Mindy who was really nice and used to watch other kids like me. When she was showing me off to other people, I held onto her real tight to her because I didn’t want to see them as much as I liked being held by her. ~~Dad took me to Miss Karen’s house. I played with Maddy and Grace ~~ Grammy came to get me at Miss Karen's and took me home. ~~Mommy was still sick, so I played with Daddy and Grammy tonight. Sorry we didn't take any pictures, but Mommy usually does that for us. Hope she's better soon!

Today Mommy and I were in St. Louis at the kids hospital where I go to see my doctors. First I'll let Mommy tell her big people part of the story, then I'll show you some pictures of what I did. Mommy note: We started with ears--audiology and ENT--as you probably read earlier in the post below . In the afternoon, we went to see Dr. S at the Eye Center. I had received a call early this morning that Dr. R was ill and asking if we wanted to see Dr. S instead, as the caller mentioned that she knew we were coming from "far away." I said, "Yes, please," and thanked her for not just bumping us to another day. Turns out, Dr. S is great, so we'll continue to follow with him anyway. He is the optometrist that works closely with Dr. C, the ophthalmologist, who we saw initially and is the head of the department. In summary, Dr. S said the glasses were doing what they were supposed to, the eyes were doing what they were supposed to in response to the glasses, and tha...

We're in St. Louis again today. This morning we saw the audiologist for another hearing test, and then we saw Dr. M, the ENT. The hearing test went just like last time. She doesn't respond to her name from a strange voice through a distorted speaker. Surprise, surprise. She was obviously hearing it, as she reacted to the sound like she does to strange noises, but she doesn't look toward it. So it doesn't count. But that's ok. I expected it, and it's all good. The tympanogram showed no movement in both ears, but that's also no surprise. On a typical kid, that would indicate fluid in the ears, but since DS often causes the ear canals to be super tiny and narrow, it's to be expected. Since we are quite sure she's hearing well, she responds to very low voices in everyday activities, and she's never had the slightest bit of ear issue or sickness, we just get to come back in three months to check again. Dr. M, the ENT, put her under the micr...

Today was Playgroup at the big college place. I had a pretty exciting day. We decided to make a movie of it since that way you can see what I did better. (Here's Mommy's story with all the big people details of today.) (Mommy note: There are alot of very exciting things in the video, but some of them are subtle.) Make video montages at www.OneTrueMedia.com Wasn't that pretty cool!?! Mommy and Daddy were so excited at how good a playday it was! Here's a few more pictures from today. I liked the green fishies alot. I even let Miss Lisa play the fishie game with us. She's one of the students who make our playtime fun. Tonight we went to Toro with Miss Ann and Mr. Marc. The boys and Kaylee came too. Kaylee ate her food and I at some little bits of beans, salsa, gwakamolee, and sour cream. I licked it off of a chip, not a spoon. Both Kaylee and me ended up with messy faces. But it was pretty yummy. Mommy thought I did a very good job with my little bit of eating.

On Thursday Mommy and I did some work around the house. While I was waiting in the big comfy chair for her, I started to feel my hair do some funny stuff. Mommy came to see what I was trying to tell her about and this is what she found. Can you see my hair sticking out? (Click on the pictures to make them bigger if you can't see.) It was so funny. Mommy said it was stadi-kling or something like that. Every time we sit in that chair, we make all kinds of pops and snap noises when we get up. While Mommy was working today, I was practicing a surprise for her, but she caught me doing it. I found another fun new trick to do. Mommy does it alot when she says, "Yay Braska" when I do good things. I did it alot that day and I'm getting better at it already. Mommy didn't have the camera right there, so she took a movie with her phone. That's why it's a fuzzy movie. Thursday night Mommy and I went to the DSN meeting, that's where there are other kids who have t...

Tonight we went to our first actual regular meeting of our local DS group, Down Syndrome Network (DSN). We had been to the group's picnic last summer in June, but we hadn't gone to any of the monthly meetings since then. We haven't really been sure what we expected from being involved in the group or what we could offer, so I suppose we just haven't moved forward. Last month, we went to a Parents' Night Out event with the group and got to know Jen and Mark who told us they attend the meetings. It's always nice to know a familiar face at a new place, so I decided I'd give the meeting a go this month. Wouldn't ya know, I opened my big mouth earlier this week about maybe starting a 0-3 playgroup among the group, so I even made the agenda on my first meeting....name listed and all! It went well, snowy weather aside, and I was glad to get to see the kids again, meet some new parents, and find that we should have at least 4 kids at our first playgroup date...

On Tuesday morning, Miss Robin came to see me. Miss Alyssa came to watch too. She's my new friend that's hanging out with us some to learn more about families with kids that are special like me. She goes to the big college here. Miss Robin made me sit up on her knees, and she made them all wobbly so it was hard to stay up! But I did it! Then, when Daddy was home for lunch, he decided to share some of his pudding with me. Mommy was trying to get him to be careful so there wouldn't be a mess, but he said I should get to play. Mommy just made funny faces every time I got this stuff on my shirt. I did think it was ok, but I only ate a tiny bit. Then I stuck my tongue out a Daddy. As soon as we were done with the pudding, Mommy took my shirt off right away so she could clean it up. Daddy just laughed at Mommy. When Daddy got home from work, he took a nap on the couch in the girls' room. I was playing on the floor and decided to show Mommy something. This is ki...

Sunday morning we had some time to play before we got ready for church. So I sat on Daddy for a while and told him about what the bears taught me in my room while Mommy and Daddy were sleeping. The bears tell good stories and teach me stuff while I'm playing in my bed before Mommy comes to get me. This is the best way to get Daddy to listen. He can't get up and go away til I'm done with him! When it was time to get dressed, I put on my Valentine's Day dress from Auntie Rachel. It's got a little fuzzy heart on it that's soft. Mommy decided to try a new hair do since my hair gets in my eyes sometimes. It was kind of like a little bug or something weird on my head. But some people liked it, so I guess it was ok. Sunday night we went to Toro with our new friends. This is Sophie, and she's pretty fun. She has an extra chromosome like me. She's 7 1/2 months old, but she likes to eat better than me, so she's bigger than me. Mommy says I should lear...

Today marks one year from when Braska started telling her "stories" through this blog. She was just shy of 3 months old and preparing for open-heart surgery the next week. In an attempt to keep the grandparents happy with plenty of updates on how she felt that day and what fun things she was learning from her baby bouncy seat, she decided to share a story each day, along with a few pictures here and there. Braska has come a long way...a very long way. She has gone from a quiet, very calm baby whose heart was working hard to keep her awake for longer than a few hours at a time to a little almost-toddler who has decided that she wants to try things (not eating, of course), go places, and interact with us in ways I honestly didn't think we'd experience for much longer than it has been. She has now worked about 11 months with developmental therapy and occupational therapy and about 6 months with speech/feeding therapy. She's mastered rolling, finally conquered sitting...

It's amazing to me how I just *happen* to run across blogs that cause a shift in my perspective. And trust me, I could use alot of shifting. I would like to share one such blog with you. Adopting William is a blog about adopting William. Simple enough. But this is not your "normal" adoption, if there is such a thing. This is an act by a family to love a child that many would think has little value, sadly enough. The example that Jen and her family have been to me in the steadiness of their resolve and the faith in doing the right thing has really touched me. Please take the time to read their story. It's not all that long, but it is one full of love and sacrifice and a true testament to trusting God, no matter what. Leave Jen a message of encouragement, as we know how much comments brighten our days and help us not feel alone. God bless you, Jen and family. We're praying for William and a homecoming very soon!

Today I got up and went to college! Are you surprised?! This morning was the first time for my new class, Stay N Play Playgroup. It's at the University of Illinois. That's a big college here where we live. You might have heard of it. The teachers picked me to be in the group, and I think that's nice of them. The kids in there are kind of close to my age, but they are all a little bigger. (Mommy told her story about today here if you want to read more about the big-people details.) First, we sang The Hello Song, then we played a little bit. That's Braxton and Alina in the picture with me. We went to a couple different places in the room to try different things. That's Kathryn in this picture. They had some things kind of like blocks, but I didn't like them. I don't like blocks either. I'm not sure why everyone wants me to like blocks. Then we had snack time. We all went to the tables and they had crackers and drinks. Mommy gave me a few crackers that h...

This morning Mommy told me it was Valentine's Day. She told me that's when people get extra-special love and sometimes chocolate. I gave cards to Mommy and Daddy because they are my bestest valentines. Daddy even got me out of bed since I got up before he went to work, and I gave Mommy the card I got her. Daddy did a very nice valentine present for Mommy. You should see it. She put pictures here. It's got lots and lots of pictures of ME!! Mommy cried, but she was giggling. I'm not sure how that works, so I just looked at her funny. After Daddy went to work, I played a little and did some leg exercises in my bouncy chair. I worked so hard that I fell asleep again! This time, Mommy got sneaky and took some movie of me bouncing while I was asleep. We went to the store and got some goodies for Miss Andrea. She's in the hospital because she has two babies in her belly and they're trying to come out even though it's not time yet. Valentine's Day ...

Miss Louise came today. She helps me learn how to tell Mommy stuff and she tries to get me to eat and chew on things. A while back she gave me one of my favorite toys. It's called a chewy tube. It's like Mommy and Daddy's computer cords that I like to play with and chew on, but it's not as dirty and it's squishier. I don't like to put things in my mouth, but I have been playing with my chewy tube a little in my mouth. Usually I just look at it and pull on it, but today I put it in my mouth and closed my mouth on it. It felt kind of good. Miss Louise and Mommy decided to play mouth games with me but not try to get me to eat food if I don't want to for a little while. Miss Louise has things that look like floppy hands that she puts her hands inside of. They taste kind of good when she puts her fingers in my mouth to play some mouth games. I tell her when I don't like it, and she lets me take a break. She told Mommy that she can keep giving me fo...

Today was so full of stuff! I've got alot of pictures to show you and some fun stuff to tell you about too. First, Miss Robin came this morning, and we worked on my belly muscles and side belly muscles again. I did my exercises really good, and she and Mommy were very happy. So Miss Robin thought she'd try the next thing for me to learn. She told me before that I had to get my belly muscles strong before I could start to practice using my legs to get up. I don't usually like to use my legs for that kind of thing. But since I have started to get stronger in my belly muscles, I can do some neat things. Miss Robin had a thing called a "slinky" that I think is really fun to play with. She put me on her leg and leaned me forward a little to hold myself up a little with my feet on the floor. Mommy and Miss Robin were happy again that I could hold myself up and play with Miss Robin only holding me still at my diaper. I was able to hold up good, and I played with the slin...