Braska Bear

This morning I got up real early with lots of energy, so since I wouldn't let Mommy sleep, she decided it was time to try on my new clothes that Miss Karen and Grandma C got me yesterday. Here's three of the four outfits... you'll have to wait til tomorrow for the super-snazzy dress. Here's some pics that Grandma C took last night with my new sunglasses. Am I stylin' or what? Then I played for a while this morning while Mommy worked. I took a little nap, but I got interrupted so I didn't sleep long. I had some more bananas today, and they were pretty good. This afternoon, Auntie Rachel and Mr. Patrick came to Grandma C's house to see me. They brought me a neato pink outfit. It's for baseball or something...Cardinals, I think. They're big fans. Mommy says it's a little too big, but I'll be able to wear it soon. We went out to lunch. I went to sleep while they were eating, but soon I woke up again because there were some kids ...

We are still at Grandma and Grandpa's house. Mommy and I stayed home today so Mommy could work and I could play. I got a bath first thing this morning, but it wasn't in my normal tub. Mommy put me in the bathroom sink. That was kind of weird, but it was still a little fun. When I got finished and all dressed, Grandma C said I smelled really good. I hung out on the couch next to Mommy while she worked on her computer, and I looked at the colors on the couch. One of them I didn't like so much, so I figured out how to say I didn't like it. Get the message?? I also occupied myself with my new toys. Here they are... Mommy calls them "hands" and they are always around when I get bored. Grandma C and Miss Karen bought me some cool new clothes today...including one really pretty new dress and my first pair of jeans. Be watching Sunday to see how snazzy I am! Tonight Mommy and Miss Karen went shopping and Mommy got some neat new things. We're both gonna look snazzy...

Mommy had an appointment with a doctor today, so I went with her so she wouldn't cry. I see alot of doctors, so I'm used to it. Dr. L told Mommy that everything looks good. So I guess she's ok. While we were there, I got to meet Miss Jennifer, one of Mommy's friends from a long time ago (at least before I can remember). She works at the place where we saw Dr. L. She says she reads my blog, so she was glad to get to meet me. Hi Miss Jennifer!! After we got done with the appointment, we met Auntie Rachel for lunch. Mommy and Auntie Rachel talked for a long time, so long that I fell asleep while Auntie Rachel was holding me. Then we ended up at Auntie Rachel's hospital so that I could meet the nice ladies who work with her. She said they all check the blog to see what I'm doing each day too. Hi Ladies!!! It was nice to meet you all! We went to see Auntie Rachel's office too. She has pictures of me on the wall and on her shelves. I feel special! Thanks Auntie Ra...

I saw Dr. L today, the great guy who did my surgery on 3/10. I have been having an issue with one of my incision sites, but he said it's looking ok, nothing to worry about. It has improved over the last couple days, so I'm feeling better about it. I did get to see my ole' pal Jennifer while at the office. (Hey Jen!!!) We used to work together way back in the pre-marriage days... ah, the things we managed to get into. :o) Good times... We see Dr. F for Braska's follow-up and echo on Monday.

Today I rode in the car again. I took a little nap, but I didn't sleep all the way, so the trip was much longer than the last time we did it. I started complaining just before we got there, but Mommy just kept going. There's a big silver thing by the water that we went by. Mommy said one day we can go inside of it when I get bigger. I got some cuddle time with Grandpa John and Grandma C. I also got to see Auntie April and Uncle Levi tonight, since they came to visit me. This is me with Uncle Levi, just chatting about what's new. Tomorrow we'll have more play time I think, and that will be fun!

I think I got in and out of Mommy's car about 500 times today. Actually, I can't count that high, but I heard Mommy say it like it was alot. I know that we did ride around alot today, but we stayed in the same town the whole time. That seems like no fun. Here's how my day went... ~First thing this morning, before Pop even left for work, we took Belle to see Miss Wilma, her groomer. (She needed a haircut SO BAD!) Then we went back in an hour to pick her up. (This is Miss Wilma saying hi to me.) Belle's before and after pictures.... ~We dropped Belle off at our house and went to see Dr. A. While we were at the hospital, we went to the NICU to say hello to the girls there who took care of me. (Hi Miss Melissa!!) Dr. J wasn't there, so we'll have to go back when I can show him how big I'm getting. ~We went to the bank on the way home from the hospital. (Drive-thru, I didn't get out then.) ~We got home in time for me to eat lunch, then Mommy fixed lunch for ...

We saw Dr. A today. He is the pediatric cardiologist that saw Braska in the NICU a couple of times and originally treated her AV canal issues and such, along with Dr. J. We then went to Dr. F in StL for the surgery, and we've now gone back to Dr. A for follow-up closer to home. Well today we just did a quick visit with Dr. A to check in so he could get updated on her current condition. He confirmed what Dr. Y told us last week--that there is a murmur, mitral valve regurgitation or leakage, that is heard now. This is not abnormal in situations like hers, but we do need to be sure that it is manageable and not out of hand. He also agreed that we need to get an echo done to see exactly what's happening. Since they want to compare it to the ones right after surgery, we're headed back to see Dr. F on Monday. IF it is more than they like to see, they will watch it for a while and then most likely have to do more surgery to repair the problem. Again, that would not be all t...

Ok, so maybe it's not that far, but when I make the trip it puts me to sleep. Grandma C and Miss Karen came to our house today. They came all the way from St. Louis and brought us a couch. They were so nice that they bought lunch for Mommy and Pop, too. Mommy was so busy working on getting the old couch unstuck from the doorway where they tried to take it to the garage that she didn't even take any pictures of me with Grandma C. But Pop did think to take a picture of the old couch in the door. Mommy and Pop always say this couch is the most expensive lesson they ever learned. I'm not sure how that works, but I know they are not really sad to see it go after six years. Grandma C and Miss Karen asked Mommy if they could take me with them to see Great-Grandma Jeannine and Great-Grandpa Fred in Montana, but Mommy said she didn't know how I'd get my food without her. I think maybe both me and Mommy could sneak into a suitcase and surprise them on the way. Mommy didn...

Today was a pretty fun day. Of course, we started with getting ready for church. Mommy found a dress that we forgot was in the closet, and I'm almost too big for it, so we thought it was a good day for that one. After she got me dressed, Mommy put me on her big bed while she got ready. I enjoyed myself while I waited... For those of you that prefer still shots, here's a few... I was enjoying talking to Pop during church, and he must have liked it to because he took me out of the big, quiet room and walked around so we could talk. After we got back to the big room, I got to see some more friends. One is Miss Trisha. She has been doing all kinds of cooking for Mommy and Pop since I've been keeping Mommy so busy. Mommy says she is a lifesaver. I think that's really a good thing. Today she brought a bunch more stuff, some for Mommy and some for Pop (he's picky, Mommy says), but nothing for me. Oh well, maybe next time. I'll just stick with milk for now, I guess. Wh...

This is a clip (from earlier this week) that probably will mostly be enjoyed by all my grandparents, as it's probably not too exciting for just you normal people. But in case you want to see how I'm enjoying one of my gyms, here you go. There are a couple other shorter ones at the following links... again, mostly for my grandparents. They seem to like to see me do just about anything, or even nothing. Love you guys! Playtime 2 Playtime 3 Today was pretty warm again. After Mommy worked some this morning and I napped, we went to spend some time outside. We drove around some with the windows open in the car...(even the one in the top of the car!) Then we walked some around this place that has funny things in the grass. Here's some pictures of me in my wheels in front of a few of them. We also went to get something cold to enjoy, and we sat by some water and watched some funny birds that Mommy called "geese" too. When we got back from running around, Pop had put toge...

I have had a headache and a leg ache all day, and I just keep telling Mommy to fix it. She keeps saying she's sorry, and she gives me stuff in my mouth that she says will help, but I still don't feel very good. Then she took me to that place where we used to go alot where they stick something sharp in my arm, and it hurts!!! Mommy tried to make me feel better all day, but she just didn't get the job done. I guess I complained alot, or at least she told me that I did. She didn't even get time to take any pictures! I'm going to have to talk to her about that tomorrow. I'm going to bed for now. It's been a tiring day for me.

Although this is Braska's blog, several of you have been asking about my status, so I'll do a quick update on that along with her info. I saw my primary doctor here again today for a check on one of my laparoscopic wounds which is...let's say...not healing as well as the other three. I'll spare you further details. But it is a bit worrisome, so I thought I'd have it checked out before the weekend. He thinks the symptoms are not worth great concern at this point, but I'm glad I had him verify that. He did say to touch base early next week if things are not improved. And I'll still be seeing my surgeon for follow-up in St. Louis on 4/2. Overall, I'm doing well post surgery, although Braska has healed way faster than I have, for sure. After her shots yesterday, she has had some minimal reaction in her leg, just the same as she did last time, which just causes her to be uncomfortable. So she was one grouchy little thing today, and she made sure that ...

We saw Dr. Y, the pediatrician, today. Braska had the basic 4-month check and shots. She did great with the shots, just like at 2 months. Fussed very little, and she hasn't had any problems this evening, which is great. She gained from 10 lbs 15.6 oz yesterday pre-feed to 11 lbs 0.5 oz pre-feed today. Not much, but I'll take it. We're going to try to get her to take as much as possible, but she still won't have anything to do with a bottle...only nursing for this girl now. We will go back for another weight check next week. He also ordered some blood work, which we'll do tomorrow. We're going to try her without one of her meds (for reflux) to see how she does. He did hear a bit of a heart murmur today that he didn't hear last week, so he wants us to see the surgeon again the week after next to repeat an echo for comparison to make sure all is ok. We also need to see the cardiologist up here next week, as well as setting up appointments with a gastro...

I went to see Dr. Y today, and of course, Miss Laurie and Miss Amiee too. Miss Laurie put me on that silly scale again, and everyone seemed pleased with what they saw. I don't know why they feel like they have to put me through that deal over and over. Then, after Dr. Y checked me out, Miss Laurie came back and stuck me with something very sharp three times. That was no fun at all. I told her about it, too. But Mommy told me I did real good, so then I was happy. Mommy, Pop, Belle, and I went for another walk today. I like walks. I like to be outside. But whatever we're walking on is really bumpy. Mommy says the sidewalks need fixing, and I hope it happens soon. Tonight our friends Miss Debbie and Mr. Kevin came over. They brought dinner for Mommy and Pop. I didn't get to have any food, but they played with me. Miss Debbie brought me all kinds of neat toys and even a new coat for next year. I can't imagine I'll ever be that big, but they told me I'll make it. Mom...

Some of you might think I'm being silly to call this my birthday, but in my world, 4 months is a big deal! Mommy, Pop, Belle (our little dog), and I took a little walk today, because it was so nice, and after 4 months, it's about time I get to go outside and enjoy the sunshine! Today is also World Down Syndrome Day. I don't really know what that means, but Mommy was telling me about how special I am and how we want everyone to know that it doesn't mean that we won't be great, us kids with DS. We've got alot of stuff to give to this big old world, so watch out! Mommy calls me "the up" in her day....no pouting about Downs around here, no sir! I'm just excited to show Mommy and Pop what I can do! The only less-than-fun thing about today was that I had to be weighed on that dumb scale again...naked, of course. I just don't care for the undressing part at all! Miss Tammie came instead of Miss Dayna today, and she weighed me, then waited while I ate ...

As most of you know, for all but the last six days of her life, Braska has been fed through an NG tube. This was for two reasons: to ensure that she would gain enough weight to make it to her surgery (check!), and because she would not suck properly with a bottle. As of last Thursday morning, she has been breastfeeding and has been without the tube, which we celebrated with a big yippee! Unfortunately, she has been losing weight, so her pediatrician is now concerned that she is not getting enough. So today we had a visit from Tammie with home health. (We are still sad that it was Dayna's day off.) Braska was weighed pre-feed, then I fed her, then she was weighed again. She gained only 0.6 ounces, which is supposed to mean that is all that she ate. I can't see how that's possible, but the numbers are supposed to be believable. She was sucking and swallowing like a champ, and she was super contented when she was done, so it would appear that she had a good meal. I jus...

I learned something new today. I like to be at home. That's it. Just home. Not running around, although it's ok sometimes, but just at home all day long. I stayed in my pajamas all day and Mommy was in her comfy clothes all day too. She worked alot, so I got to sit with her at her desk when I told her I was tired of my chair. She did take a few breaks to play with me a little and we listened to some Baby Einstein music. I like that alot. My chair makes nice music too, and I did a little wiggle dance with the tune. Tonight I played in my Pack N Play while Mommy made dinner. I have alot of soft toys in there that people have given me. I don't play in there very much, but it was fun this time. There's a neat bunny that someone gave me, and I think its ear tastes very good.

I had quite a full-up day today. This morning Miss Dayna came to check on me. I hadn't seen her since my surgery, so I showed her all my energy by telling her when I wasn't happy with getting on that silly scale, all naked and everything. She said I looked real good, which I knew, of course. People keep saying that, and I'm beginning to believe them! I also showed Miss Dayna and Mommy that I know how to get what I want sometimes. I complained long enough at them that Mommy finally picked me up, and I stopped complaining immediately. Why complain when I am where I want, right? They seemed to think I'd done something sneaky or tricky, but it makes sense to me to do what will get me what I want. Mommy and I had lunch with Miss Angie and Miss Janet. They are friends of Mommy's and they used to get together for lunch alot, before me. They even came to see me when I was a new baby in the hospital. Mommy calls it "Lunch with the girls" on her calendar, and I thin...

Braska's home health nurse, Dayna, came today for what we thought would be the final visit. The order was for a weight check to make sure she's maintaining after surgery and with the med changes. Her weight was down a little from last week, at 11 lbs 1 oz today. Since she just started feeding on her own last Thursday, and we can't really measure how much she's getting like we used to, we will be watching this closely with home health and her pediatrician.

Sundays at our house always start the same way. I get to hang out for a while in Mommy and Pop's bed after they get me up. Then we all get ready and go to church. I like church. There's music that I like and we see lots of friends there. Everyone there is really nice and they always come over to see me. Today there were even more people who came to see how I was doing after my surgery. I smiled and squirmed all happy-like to show them how good I felt. My mommy is not even feeling as energetic as I am, and my surgery was way worse than hers. The other really neat thing about church is that it is my special time with my Pop. He always holds me all the way through, and I usually just watch what's happening until I fall asleep. He is really comfortable to cuddle with. Today I got to get up high and look around more, and that was fun. There are alot of people there.... but everyone I could see smiled at me, and that's really fun. Mommy told me that all those people have been...

Saturdays at our house are comfy days. That means that we all wear our comfy clothes most of the day. For Mommy and Pop, they have soft, cozy pants and shirts that are great to cuddle up on the couch in. For me, it means I get to wear my pajamas all day, unless we go out somewhere. Mommy spent the morning working around the house and putting lots of stuff away while Pop read some, napped some, and took a bath. So I spent this morning in my chair, talking to Mr. Panda Rattle, in my pajamas. We did finally get dressed, at least a little bit, this afternoon when Mommy and I went to Wal-Mart. We got a whole bunch of stuff, mostly stuff to eat since we've been gone and there's not much there. At least that's what Pop says... I don't have any trouble with finding food, so I don't really know what they mean. When we got back, Pop helped me to try out my super cool rocking horse that was made just for me. It was a gift from Grammy Jan and Papa Beagle (that's what I cal...

Today was a busy day. I got to spend alot of the morning in my Wheels. That's what I call the thing that Mommy pushes me around in. I like it alot. I think I have a pretty sweet ride. Check out my Wheels! Mommy took me with her to work on some computers at one of her doctors' offices. The ladies there are so nice to me. Then we went over to the hospital next door to see my friend Miss Carla. She took real good care of me when I stayed at the hospital for 3 1/2 weeks back when I was a new baby.... seems so long ago. Miss Carla is super nice and calls me her Snowbaby. Mommy forgot to take a picture of us , so I can't show you how cute we are together. Maybe next time... Then we met up with Mommy's good friend Miss Janet. She gave me nice hugs and I showed her how I like to suck on my lip when I'm ready to eat. Finally Mommy got the message and took me home so I could eat. Then tonight, after Pop got home from work, we went to El Toro. It's our favorite place to e...

I felt pretty good this morning. I think it's this bed. Mommy keeps thanking me for sleeping all night long. Isn't that what we're supposed to do at night? I even napped in my cool bed today. I got to go see Dr. Y today and Miss Laurie and Miss Amy. They were very happy to see me, which made me feel special. Dr. Y listened to me and poked around on me like he usually does, but this time I told him what I thought of it. I kicked him a few times too, just to show him I could. This new energy I have is pretty fun! Then Mommy took me with her to another doctor's office. But this time no one made me take my clothes off and get on that silly cold scale. They just left me in my seat and told me how pretty I am. Mommy did some work for these doctors and I waited in my seat. She said we get to go visit doctors sometimes for her work, and I get to just watch on those visits. That sounds good to me.