But look at me now!!! Happy as a little clam with all kinds of silly energy!
Thursday, February 28, 2008
But look at me now!!! Happy as a little clam with all kinds of silly energy!
Wednesday, February 27, 2008
~~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!
Monday, February 25, 2008
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 that we should continue to keep them on her every possible moment of her waking hours. He confirmed and clarified a few questions we had about whether they only helped her with close vision or if they helped with near and far. The bottom line is that they help her muscles to be able to focus without overstraining and thereby crossing her eyes, making nothing clear. This affects her near and far vision, so it's all the time for the glasses. Return visit for eyes in 6 months. We ran to St. John's to get the glasses adjusted, so all appointments made! Now to convince her to leave them on in the car... the important part is this...I went into today expecting to hear that we needed two surgeries...tubes in the ears, and muscle correction in the eys. But we came away with neither and good reports on both!!! God is SO good to provide us wonderful doctors and access to them! We are very blessed and very, very thankful! Back to Braska's story now.
First we went into a little room like a box and it was very very quiet. There was a lady who talked to me from somewhere, but I couldn't see her. There were bells and toys dancing and all kinds of things, and I'm not sure why. Mommy said I was supposed to look at where the lady's voice was coming from, but I knew she wasn't there, so why should I look??
Then we went to see Dr. M. He looks at my ears. While we waited for him for just a minute in the little room, we watched the cars on the big roads. Isn't that neat how you can see them right out there? I thought it was fun so I clapped. I like to clap alot now!
Dr. M made me very mad and scared a little while he was looking in my ears and cleaning them. I don't like it at all when the nurse lady has to hold my head still and Mommy has to hold my hands so that Dr. M can stick a thing in my ear to see what's in there. And it took a long time! I was very mad and told them all about it really loud! But it was all ok as soon as Mommy picked me up. Then I was happy and clapping about it being over.
After we were done, we went downstairs to the place with all the colors and trees and tables where people eat lunch. Mommy and I found a table in a little cubby area that we could sit in for a while. Mommy did some work, but I wanted to help.
Here's me working on the thing where she keeps all her numbers for the girls who help her get work done. She calls it egg-sell.
Here's me working on my stories on the blog.
Then she gave me one of my books and put me back in my wheels. I guess she didn't need my help anymore.
Then we went over to the other place about eyes where I got my glasses. Mr. Terry helped me get my glasses to fit better and he was fast. So we got back in the car to go back to Grandma C's to get our stuff to go home.
When we got back there, we found out that we weren't going to make it home before the snow came at our house, so we decided to wait here at Grandma's until tomorrow so we can go home in the daytime when we can see the roads better.
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 microscope again. (In case you forgot what that looks like.) He cleaned out some wax while she screamed hysterically, but the final word is that both ears are clear, no fluid. He said he's 100% sure on one side and about 80% sure on the other, as he couldn't see quite all of the TM(eardrum). But he was comfortable in letting her go for another 3 months. He said we are "way above the curve" in that we haven't had any sinus, cough, cold, or ear issues in 15 months...just the runny nose of this past week, and that's just plain amazing in the world of DS in general. Since we have no concerns about her hearing or speech at this point, he's fine to let us wait on tubes, although he reminded us that they are way common, and we know that. I don't mind doing it when she needs them, but I'm glad for now she doesn't.
Now we hang out for a couple hours in the atrium cafe while I work and she sneaks a short nap, then we see the eye doctor at 1:00 pm. Then we head across town to the kids eye center where we can get her glasses adjusted. Hopefully we'll head home this evening if all goes well.
Saturday, February 23, 2008
(Mommy note: There are alot of very exciting things in the video, but some of them are subtle.)
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.
Friday, February 22, 2008
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 the extra special chromosome like me and their parents get together to talk about stuff and learn new things. Mommy told her story about it just below. This is me with some of my new friends.
That's me and Sophie sitting with her mommy Miss Jen, then there's Sarah with the pretty hair and glasses like me, and there's Madison with her mommy Miss Colleen. Madison and Sophie are going to be coming to my house in a couple weeks to play with some friends for a new fun playgroup. It's gonna be fun!
Thursday, February 21, 2008
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 in a couple weeks. That's exciting, I think. I was kind of nervous about the whole thing, but it ended up being a nice evening.
Each month they have a short program of some kind. There were two ladies there who told of their daughters in their 20s with DS and how they are doing after transitioning to the adult world. They are both working and have been to college, one of them lives alone in her own apartment and is getting married next month to her high school sweetheart who does NOT have DS. The other has a boyfriend and travels around town on her own via our mass transit system. They both sound like wonderful girls, and I hope to meet them one day.
There was also a woman there who talked of her brother who has DS, is 42, and has had a very different experience. It's amazing to hear how horrible the things that were said to her family were when they chose to bring him home to raise him with the family. He is the 5th of 7 children and the parents were told that if they planned to raise him at home they needed to send the other children to live and grow up with relatives so that they wouldn't be ruined socially. They actually were told that no one would want to marry their daughters (his sisters) because they had him in their family. But they chose to raise him anyway, and he still lives with his 70+ year old mother now. He is nonverbal and not independent, but he is still her brother and has been a valuable part of the family.
Things have changed so much, and though we have a long way to go, especially since 88-90% of mothers who receive a prenatal diagnosis of DS choose to abort, I'm thankful that Braska's opportunities for the resources she needs are as available as they are.
For those of you that read this blog regularly and don't have a family connection to someone with DS, THANK YOU for supporting us and taking the time to see how life really is. I hope you can take the opportunity, when faced with one, to tell someone of what you've learned about how really plain-old regular life can be. Even in the midst of therapy and doctors, we play, love, and grow. I really believe that it's that kind of word-of-mouth sharing and learning that will change the way our society values these children and adults.
Wednesday, February 20, 2008
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 kind of fun, doing things and moving around more. I think I like it!
Tuesday night they guys came over to play Magic with Daddy. I've had a messy nose for a few days. It's got all kinds of icky sticky stuff coming out of it. So Mommy was cleaning out my nose on the dresser where she changes my diapers. I didn't like that at all, and I started yelling at her alot. She picked me up and cuddled me for a minute. Then she put me back down and said she wanted to change my diaper, but I started yelling, because I thought she was gonna mess with my nose again! So she picked me up, and I stopped yelling. Then she tried one more time, and she kept saying she was gonna change my diaper, but I didn't care. I just tried to tell her I didn't want to be on that dresser for her to mess with my nose! Then Daddy came back to see what was happening, because I don't ever yell like that. When I saw him come in, I just reached real fast to grab his shirt so he would take me. He thought that was pretty good, because I don't usually do that. But I knew he wasn't going to bother my nose. He laughed and told Mommy that I had told her what for. I'm not sure what that means, but I just wanted Daddy to save me from Mommy's nose cleaning.
I went out and sat with Daddy while he played for a while.
Here's a picture that Mommy and Daddy like alot, so I thought I'd show you too. I'm pretty cute, if I do say so myself!
Tuesday, February 19, 2008
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 learn from her so I can be a big girl too. Isn't she so pretty?!?
Her mommy and daddy, Miss Jen and Mr. Mark, came too, and her big brother Alexander. He likes trains alot, so he got excited when they came by Toro like they always do. We had a nice dinner but I only took one little bite.
On Monday, Daddy didn't have to go to work because of some presidents or something. So we had some family cuddle time in the big bed. Mommy went to the store to get some things and Daddy, Belle, and I went back to sleep for a while.
Later I took a bath and played for a while. It was pretty fun. Lots of splashing and making messes. I liked to feel the water on my tongue, so I kept opening my mouth. Mommy said, "Why can't you do that in your high chair??"
Then Daddy came home and played for a few minutes.
Right after Mommy took the last picture, I leaned forward to get the water spray and I fell right over on my face in the water. I just got floated up and right over! Daddy grabbed me really quick and helped me get all the water out of my mouth. That was kind of scary for me!! You can click here to see another picture and see what Daddy said about it.
Monday, February 18, 2008
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, she's working on standing, and if we could only convince her to eat! She spent 8 days in the hospital for heart surgery, 7 days in the hospital for rotavirus/dehydration, one overnight for her PEG procedure, only a few hours for her PEG to button change, and minutes for the granulation removal. (That's not counting the 24 days in the NICU pre-blog.) We've accumulated a long list of doctors, all of whom who have been very helpful and thorough with our various issues. And we've learned the road from Champaign to St. Louis well enough to drive it in our sleep....but we won't.
This venture has become a blog monster that neither of us ever expected. It has served as a comfort to me during the beginning, when I needed adult conversation and support badly. It has served as a virtual diary of sorts to save and look back on when I can't remember the date something happened. And most importantly, it has served as the venue through which we've met and come to know so many people who have offered SO much knowledge, support, encouragement, and acceptance. I can't even imagine my day without blogging, as sad as that seems sometimes. But it's an outlet, and it's something I really enjoy. It has helped to educate and inform many people who didn't know about DS or had never seen a baby with it. It has even played a part in helping at least one mother decide to give her baby the chance to live, and what a beautiful, precious LOVED baby she is. I feel sure it has touched lives we don't know about and maybe never will. That's ok. We're thankful for the opportunity to say hello each time you stop in to check in on the happenings in our day. I really consider it an honor that so many of you are regular readers and care so much about what's going on in the life of my daughter and our family. It is not taken for granted, let me assure you.
In order to reminisce just a bit, here are some favorite posts, some important ones, and a little glimpse at our journey over the last year.
~~To start with, of course, the first post on the blog... A baby blog?
~~Some of our open-heart surgery posts... Sleeping Beauty, the first day of fixed-heart wiggles, the last day in the hospital, and the day to go home!
~~There's been lots of therapy pictures and info...Miss Robin's first visit, Miss Judy's playtimes, and eye tests with Miss Sue. Don't forget all the feeding with Miss Louise, like the day she surprised us all, and the messes we've made.
~~There was Braska's first pool day.
~~She worked hard at rolling.
~~Can't forget the glasses!
~~Just this month she started to think about standing.
~~There was plenty of Bears football watching, including dressing for the part.
~~We shared about lots of doctors and hospitals and procedures and such. Like when she got her new tube (PEG), and how she first reacted, and what she thought about it.
~~We learned alot at her six-month appointments at the DS clinic, from both her perspective and the adult detailed version, and her one-year check-ups as well.
It's been quite a ride, and it's "only just begun", as the Carpenters would say. For the few of you who have been on board from the beginning, thanks for sticking with us. For all of you that have jumped on our little bandwagon along with way, we're SO glad to have you on the journey with us. Here's to another fun-filled year and many more to follow.
Sunday, February 17, 2008
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!
Saturday, February 16, 2008
Thursday, February 14, 2008
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 is Miss Andrea's birthday too, so we thought we should take her some candy and say hello. Mr. Chad and Josiah were there too.
Since we were so close to the NICU where I first lived, we went over to see the ladies who used to take care of me. Miss Cyndy and Miss Carla were there. They're my special friends. Miss Carla calls me her snowbaby. She always wears fun socks for holidays. She had Thanksgiving and Christmas socks when she took care of me when I was a tiny baby. Today she had Valentine's socks.
Wednesday, February 13, 2008
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 food to see if I want it, but if I tell her I don't, then she can just wait til next time. But it's not like they won't keep trying, I bet. They just keep telling me how much I would like food if I would try it. For now, sometimes I'll take bites from Mommy's finger, but that's all. I like the mouth games though, so we'll keep playing those.
Tuesday, February 12, 2008
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 slinky even higher. They thought it was good and clapped for me.
I got pretty excited about playing with the slinky, and I didn't even realize I was stretching out all big and tall.
I finally figured out if I wanted to get the slinky off the ground I had to get bigger, so I pushed up with my feet. Mommy and Miss Robin got all silly and cheered again.
Then Mommy got out a pair of my shoes that help my feet stay straight. And we did the whole thing again. I stayed up for little bits and kept playing with my slinky. I even started to lean over but I stayed up with my strong belly muscles!
So today I get to say that I stood up straight for the first time, with Miss Robin's help to hold me steady. Mommy was really excited and Miss Robin said I did great.
Tonight I played in my bouncy chair while Mommy was working. I practiced getting my leg muscles stronger, and it was fun to go around and around.
I practiced so long that I just decided to rest where I was. Mommy thought it was funny because I would sleep for just a minute, then I would bounce a little with my eyes closed, and then I'd sleep some more. It was a busy day and I did big things, so I got tired! Mommy finally took me to bed, so goodnight!