Braska Bear

Tonight Mommy was fixing some dinner and she thought I might want to play with some of it. It looked like a string, but it was kind of squishy. She called it a green bean. I didn't think it was good enough to try putting in my mouth. But I did toss them down for Belle to eat. After dinner, Mommy and me went to her bedroom to put a whole bunch of clothes away. I played on the floor while she was working, and I found a new friend. She's super cute! (Mommy note: Another long video, fair warning...lots of ridiculous mommy-talking.)

Sunday I got to wear another new dress. This one is from Mommy's Aunt Chris and it's been in the closet for a long time since I'm kinda small. It says 6M on the tag, but it just now fits. Mommy says it's good to be petite sometimes, so it's ok. Thank you Aunt Chris! Monday morning Miss Judy came to see me. She brought some new things for me to do. She had this tray with some rolley things on it, but I liked the tray more than the rolley things. She wanted me to pick them up, but I just pushed them out of my way. Mommy took some movies of me playing with Miss Judy. It's kind of long, but it's mostly for the grandmas anyway! Ha ha! They don't mind long ones because they like to see me play. After Miss Judy left, we went to see Dr. Y. I looked at my book while we waited for him to be ready. He has a new nurse, Miss Maria, and she put me on the silly scale. I was 16 lbs 8 oz, same as a couple weeks ago, so that's good. I didn't go down any...

Today, I took a bath in the big people bathtub. Mommy said since I can sit up now I might like to play in the big tub. I thought it was pretty fun! I especially like the spray thing. Tonight Mommy and Pop went to a party with other mommies and daddies who have extra special kids like me. I went to see Miss Debbie while they were gone. Miss Aubrey was having a party at their house, and everyone was so nice to me. They said I was the star of the party! Thanks for letting me come to the party, you guys!

Tuesday 1/22 Miss Robin came again. She made me practice my side belly muscles again. Since I always lean and try to help Mommy type, they put her computer down so I could try to get it while I was exercising. I was watching my giggles video because I think it's pretty funny. Miss Robin said I was getting stronger and faster at getting up. Sometimes I forget what I'm supposed to move next, so she has to help me a little. She kind of tickles me under my arm to get me to remember what I need to move. Auntie Rachel got me a new fun thing last week when she bought all my new clothes. We finally got to try it out today, and I thought it was very fun! It's going to help me make my legs stronger, because I don't like to use them to hold me up. First I just thought it was a fun chair. Then I found out I could bounce and do what Mommy and Pop call a "happy jig." I had a good time, but I kept hiding from Mommy. Make video montages at www.OneTrueMedia.com Wednesday 1/23...

It's time for me to get you caught up again. I'm trying to help Mommy get her work done around the house so she can have time to help me tell stories everyday again. Here's some pictures from the last couple weeks. Monday, 1/14 Miss Judy came to see me. She brought some pretty neat toys to play with. There was a big bowl that was kind of like the ones Mommy makes cookies in, but Miss Judy put me in there! She made it move so that I had to work pretty hard to stay sitting up. Then she had a neat blanket thing that we moved it up and down and played with. Mommy said we might get one to play with because Miss Judy said it would be good for me. It's called a par-u-shoot. Then Mommy and I went back to the SJ town to see the work office again. And we went to lunch with Miss Karen (a new one!) at the new Toro that opened in SJ town. That is three days in a row at Toro! Mommy thought I might eat some salsa again, but I didn't feel like it today. Do I look like I want salsa...

Miss Kari, Chanelle and Tristan's mommy , picked me to play a fun game! Sometimes people tell stuff about themselves, and they call it a meme. Then they pick others to play! So here we go... This time it's about things we love and hate. Mommy says that Miss Kari had a good idea to talk about things I love and don't like, since I don't know about hate yet. (Mommy says that's a good thing, too.) I love my mommy. I love my pop. I love playing tickle. I love bouncing. I love family cuddles in the mornings. I love taking naps with my pop. I love strings, cords, and tubes. I don't like to eat. I don't like to drink. I don't like to have things on my tray, so I throw them off. I don't like making messy diapers because it hurts. I don't like when Miss Robin makes me do hard exercises on Tuesdays. I don't like when Mommy tries to clean my nose or ears. I don't like Mommy to be away from me for very long. How did I do? I think that's a pretty g...

The Saturday that came before this last one was not as cold as the other days. So Pop decided to do some work on getting the pool cleaned up from all the fall leaves and melted snow. Since it was nice outside, I got to go out too and watch a little. He didn't think I'd be much help with the clean up, but I was good at telling him what needed to get done. Miss Jo Ann came by that day too, and she brought me alot of presents! She found what she called a "sale" and so she got me some really cute things. This one has a fuzzy hat part. This one is really soft and cozy, and my friend Olivia has one like it so we can match. And this one is a pretty blue color. I didn't have anything this color yet! That night, I played with Pop some while we waited for Mommy to get ready for dinner. We went out to Toro and met Mr. Brent and Miss De there. It was a fun dinner, and a nice lady even gave me one of her birthday balloons. We got to see Miss Martha and Miss Chayo, but they we...

Mommy and I got home from St. Louis this afternoon. We had a busy few days there, but it was fun too. We did have alot of car trips, so I'm glad we don't have to drive more for a couple days. On Wednesday, we left Pop and Belle at home and Mommy and me went to St. Louis. First we went to Auntie Rachel's house and then went to get some dinner with her and Mr. Patrick. It was a fun dinner, but I didn't want to eat anything. Auntie Rachel tried to get me to eat some ice cream, and she sneaked it in on me! It was very cold but kind of good. Mr. Patrick told me some stuff he said I needed to know about life, and it's just our secret! I'm not telling! After dinner, we went back to Auntie Rachel's and I took a nap on her because she was cuddly. Then we got back in the car and drove down to Grandpa J's house. Grandma C was gone on her trip, but I got to see Grandpa J for a few minutes. It was my bedtime, so I couldn't play long. On Thursday, Mommy an...

I just took her back, laid her on the bed, and held her hand as she breathed the sleeping air. She did very well, and dozed off. I don't expect it to be but a few minutes til they're done. Technology is amazing. Wow...as I typed "amazing" the doc came out and said they were done. That's a total of 8 minutes. CRAZY!!! Gotta go help her wake up.... yay! It's done! That was SO easy!

That's what Mommy told the doctor this morning about this thing by my button. It was a really quick visit, and they said they could do it. We get to stay here in St. Louis today and tonight then we'll go back to the hospital tomorrow for them to take this thing off me. Here's Mommy's part of the story... They had said when we were there this morning that they thought they could do a quick Bovie procedure (utilizing electrocautery or electrosurgery ), which is quite simple, with just an inhaled sedative. But when they called back a bit ago to give me the time, 11:30 am tomorrow, she mentioned that after reviewing her history, they'll need to have an anesthesiologist there. I don't know if that means they'll need to do a more invasive type sedation, but I kind of assume that's the deal. The procedure will be the same, either way. They're doing the procedure in the APC (ambulatory procedure center), which is where they did her PEG, button, and a ...

We're at Children's in the waiting room for pediatric surgery... I love patient internet here!!! I can work while I wait. (Or read blogs...) There will be news when we have it...

This was posted moments ago. WEDNESDAY, JANUARY 16, 2008 12:12 PM, CST The following message is from Levi: I got to go home today! No more tubes, no more machines, no more doctors, and no more pain! I got to see my papa too, and he sends his love to everybody. Most importantly, I got to see Jesus. I know it's hard for everyone down there, but let these words give you home and comfort: "Let not your hearts be troubled. You believe in God. Believe also in me. In my father's house are many rooms, and I am going to prepare a place for you. If I go to prepare a place for you, I will come back, so that you may also be where I am. I am the way the truth and the life. No man comes to the Father except through me." I love you all lots, and I will see you again. Love, Levi Please continue to pray for this family as they mourn their sweet child. Thank you for all your prayers and kind words. It has meant a great deal to this family, I can assure you. I will pass on all comments ...

In the next few minutes, Baby Levi will be taken off the ECMO machine, and his family is there to be with him and see how he responds. The concern now is his lungs, apparently. Here's the report from his dad this morning. Please be praying for this tiny one. WEDNESDAY, JANUARY 16, 2008 08:42 AM, CST Well, Levi had an uneventful evening. His pressures are up a little bit and his acid levels are better today than yesterday, which is definitely good news. The main problem is not the heart, but the lungs, and unfortunately, that may be an obstacle too high to climb. Until the last week, his lungs have performed well, and they have had no reason to suspect any lung disease or anything else. However, Dr. Gandhi said this morning that the lungs are much worse than he thought, and that there wasn't much that could be done for them at this point. He's not sure if the cause is something he was born with (most likely) or just a natural result of sitting around in the hospital waiti...

First a report from Mommy on the granulation: We leave tomorrow (Wednesday) for St. Louis once again. We see the surgeon on Thurs morning for consultation and hopefully have the growth removed in the clinic on Thurs or in the OR on Friday. That's best case scenario. Otherwise, it may mean going back the next week for the actual removal. I'm sending pictures of the progress and how it looks currently and asking them to review the records from the GI prior to our appointment so we can hopefully get things moving in an expedited manner. We'll see... Here's a current pic if you are keeping track. Now back to your regularly scheduled story from Baby Boss Braska. On Wednesday, Mommy had our morning play time. We had some giggles and tickles and silly time. See if you can find my new favorite game when I stick my face up close to Mommy's face. I do it alot and it always makes Mommy laugh. Photo and video editing at www.OneTrueMedia.com On Thursday, I got to go with ...

Here's the update for Baby Levi today. Some encouraging news, but he'll need prayers ramped up for the next two days to Wednesday. MONDAY, JANUARY 14, 2008, 10:53 A.M. Ok. We got good news, which has the potential to be great news. Dr. Gandhi said that Levi's heart looked very good and that the pressures were pretty good for the 5 minutes he was clamped off on ECMO. If not for the kidney and another new issue, he would have been able to completely come off today. Because he was so full of electrolytes from not getting rid of waste, Dr. Gandhi didn't want him to start off life without ECMO behind the 8-ball, so he is going to hook up the actual dialysis filter to the ECMO machine and filter Levi fully. There was a new issue that has developed with his lungs, which may or may not be serious, which involves little air pockets (called bleps) which develop and run the risk of possibly bursting and collapsing his lung under the pressure from the excess air. Because Dr. Gandh...

Please take the time to read about Baby Levi. For his precious life's sake and his parents. Baby Levi was born on November 29, 2007 at 2 lbs 5 oz and 15 inches. He has hypoplastic left ventricle and has been in the hospital since he was born. His father is a friend of mine from church camp back in junior high and high school, and I hadn't seen him in close to 18 years until last month. Levi is in the CICU at Children's where we go for all our specialists, so we've been checking on him often. He finally got up to 3 lbs 12 oz before he had his open-heart surgery this past Tuesday, January 8. He has had some severe challenges since and is still on the ECMO machine to help his heart and lungs continue to function. Here is the update his father posted this afternoon. SUNDAY, JANUARY 13, 2008 01:49 PM, CST Levi is having a great day today. His pressures are up and they have been staying up all day long. The only small issue is that he had a bath, which made him mad, and then...

I haven't forgotten about my stories and pictures, but we've been really busy. Mommy's been doing more of her work-work, so we've been going to meet new people and visiting her offices. I've got a few pictures to show you, but I have to keep the stories short since it's bedtime. Last weekend we had a family playtime morninng in Mommy and Pop's bed. I think that's pretty fun, and we had some good cuddles too. They thought I should see if Belle would let me ride on her. I don't think she was liking it. On Tuesday, Pop came home for lunch and we took a quick cuddle nap. I like when we get to sneak those in. Belle likes to get in on the cuddles too. Tuesday night, the boys came over here for playing their games instead of going to Mr. Brian's. Mommy and I made a bunch of yummy snacks for them, and I decided I wanted to get in on the game. Pop says one day I'll learn how to be a geek girl, and that will make him so happy.

Yes, it's still here. It hasn't gone away. It's not as big as it was, but it has settled in a plateau of sorts and doesn't seem to be decreasing anymore. It's been the same for several days now. It doesn't look as bad, for sure. If you want to see, click here . See? Not nearly as bad as it was . I'm not sure what to do at this point. The GI doctor told me I could call them and they'd set up a surgical excision (removal) of it, which is fine with me, but it means another trip and procedure. I'm debating just giving it more time, as it doesn't really bother her, and I keep it covered in a gauze dressing, so it's not making the mess it once did. I think for now we'll wait and see, maybe for a couple more days or the rest of this week.

I've been playing in a new place the past few days. Mommy calls it the pack n' play, but I just call it mine. Mommy and Pop can't get in there, it's just for me. My piano even fits just fine, and it won't slide away from me when I play it. And I can see me in the mirror while I play, too.