Braska Bear

Today was one big day. This morning we got up and got all ready for Uncle Jody's wedding. We left Belle at Grandma C's house and me and Mommy and Pop went to see Dr. R so he could look at my belly thing. He said I looked pretty good and he wants me to do a couple tests. He wants to look down inside my throat or something called upper GI and he also wants me to show some people how I can swallow milk. So when I go back to see him in a few weeks to get my new belly thing that's smaller, they'll do those tests on the same day. We got out of there pretty quick and drove a bunch more to where everyone was waiting for us at the wedding. This is the little chapel where the wedding was. It was made out of big long pieces of trees that Pop said were called logs. It was a really small place. I thought it was nice inside because there was stuff to look at and really pretty colors in the windows. There's Uncle Jody helping my new Auntie Skye, and those are her sister...

Tricia at Unringing the Bell had a cool idea. Since October is Down Syndrome Awareness Month, and it's always more fun in the blogging world when bloggers actually blog, there's a bunch of us that are going to put up one post every day this month. So check out her blog and the list there of all that are participating if you want to join us or just get in some good reading. It won't all be Down syndrome stuff, but I'm going to try to use it to organize some of my stories and thoughts around the time that it all first came into my life. They'll be posted on the "mommy blog" Just RK .

Yesterday Mommy and me went to the park to walk with Miss Sara and Ali. It was really nice outside, so it felt good. I like going on walks. I slept most of the time because it was so comfy. Tomorrow we're going to see Miss Skye do some different walking. Mommy told me all about it. Miss Skye is going to take a little short walk and at the end she's gonna be Auntie Skye. Isn't that weird? I've never been on a walk that changed my name. Mommy says it's because she's getting married to my Uncle Jody. I get a new Auntie tomorrow! We were supposed to get to be there tonight for a special dinner, but we couldn't go since I have to see the doctor tomorrow morning that is gonna take a look at my belly. Mommy wasn't happy about that at all since the doctor's office messed things up. So we're going to Grandma C's tonight, then to my appointment in the morning, then we'll drive more hours and try hard to get to the wedding before it starts. It's...

I got a really cool present in the mail this week! Babylegs !!! I've been seeing these on some of my friends, especially the super-cool Georgia , and Mommy kept saying she was gonna get some. But she doesn't always get around to things very fast, so someone awful special in a place we call VT sent me some stylin' legs! Mommy's super happy since they keep my legs toasty while I can wear the shirts that make it easy to feed me in my belly. Thanks, you sneaky friends!! Miss Robin came today, and she made me work pretty hard. But I did it, and I didn't even complain today. Mommy was so proud, even though she watched pretty close to be sure I wasn't hurting my belly. Miss Robin made me practice holding myself up while I sit. See she helps me, then look! No Miss Robin hands! I didn't stay up very long, but I'm getting better!

For those of you who read my stories alot, here's a little test for you... On Sunday, what's the schedule? If it's this time of year, it's church and Da BEARS! And that means Bears wear. I talked with my friend Ali at church, and she played with Pop some. She came over to my seat to say hello. In the afternoon, I took a nap on my play blanket, and Belle must have thought it looked comfy. Then Sunday night, it was Bears time! Mommy and Pop and me all got in our "Bears wear," as we call it. Mr. Curt and Miss Sara came over with Ali P. Miss Sara even brought dinner, and Mommy always thinks that's great! The Bears didn't do so great, but it was a fun time anyway.

We went to the store today to pick up some more good food for me to eat. I got some pretty good stuff for this week. I'll let you know if I like it. But Mommy took this picture and it reminded me that I never told you about the cool things Mommy and Pop put on their cars. You probably can't read it from here... But here's a better shot. (Remember, you can click on the picture and it'll get even bigger!) Isn't that pretty good?! Get it? Because I have the extra chromosome! We like it anyway. We got one for Grandma C's car too that's special for Grandmas.

Today Mommy caught me playing and talking, and she heard some new sounds that I just figured out how to do... She was pretty happy for sure.

Mommy and me went out with Olivia and her mom tonight for some pizza. Mommy says I'll like pizza someday, because Pop likes it, and I'm just like him in lots of ways. She let me try a little sauce, and it was just ok. Olivia was way better at eating it. And she likes to smile for pictures too.

Today I'm 10 months old. I don't really count numbers or anything, but that's what Mommy told me. She said it's been like forever and like no time at all. I don't understand that at all, but sometimes big people say dumb things. Mommy got out my play gym from when I was a little baby. We had put it away, but since I'm not feeling as much like being on my tummy, she thought it might be good for me to have something to play with that I could reach. When I played with this one before, I could not reach the toys on top. I just looked at them mostly, and sometimes I would hit the ones that were close to my hands. But look what I did today... That's right...I reached up with two hands and pulled on that bug. Over and over and over. I even almost pulled him right off the gym! I tried hard to get him off of there, but I couldn't quite do it. I sure did tug on him hard though. Maybe I'll get him down later. I'll keep trying.

I'm sorry it's been a while since I put up some stories. I've been a little busy, and Mommy's been so busy that she hasn't taken any pictures. I need to learn how to use the camera, she says. Monday Miss Judy came to see me, and she said I looked so much better than last time she saw me. I've got some new tricks that she hadn't seen, like reaching up for toys with both hands and grabbing onto new toys. I even showed her how I can put stuff in my mouth, but I only like to do that with things like bibs and shirts and blankets, not hard things. Miss Judy didn't make me work very hard, she mostly just watched me and played with me a little. Tuesday Miss Robin came, and she made me work. She always does, though. We practiced rocking a little, that's when I look like a little dog with my hands down to hold me up and Miss Robin holds my legs in so my knees hold me up. I kind of like this lately. I didn't like it before, but it's not so bad now. Momm...

This weekend Mommy and me spent alot of time eating food with friends. I got to sit up to the table everytime, but I didn't actually eat very much. On Saturday, we went to lunch with Mr. Brent and Miss Jo Ann. Mommy and them always go out for their birthdays each year, one time for each of them during the month, since their birthdays are close together. This time it was for Miss Jo Ann's birthday, and she picked a place with Chinese food. I didn't see too much that I thought looked yummy, but they all seemed to like it. I did have a little bit of Mommy's lemon tea, just a few drops, and it was not too bad. I got to sit with Miss Jo Ann for a bit and she had a shiny fun thing to look at. In a few weeks, we get to go again for Mommy's birthday, then we'll go for Mr. Brent's. I like this birthday thing! Maybe we'll go for mine too in a couple of months. Sunday morning, since Pop had to work all day again on a day he's not supposed to work, Mommy and me ...

The good news is that Mommy and me are feeling better. I'm not feeling like being on my tummy yet, but Mommy says that I'll probably be ok with doing that soon. It was so nice and breezy here today that we went out to the park for a walk. I took Dolly with me and told her some stories on the way. And I got to wear some new shoes since my feet are too big for my other ones. They have Pooh on them! When we got to the park, Mommy let me lay down in the stroller without my car seat, and that was pretty comfy. I stretched out and thought the sunshine was nice and warm. We have alot of work to get done this weekend since we haven't been feeling well. Mommy says tomorrow will be a busy day, so I better get some rest. She says we need to work on getting the pool ready to close up, but I'm not sure if I can hold onto the vacuum hose.

I went to see Dr. Y today to show him my new thing on my belly. He said I looked pretty good, so I was proud of myself. Bravo to me! I also got to meet Miss Lynn and Miss Courtney. They're new at Dr. Y's office. I'm sad that Miss Amiee and Miss Laurie had to go to other places, but it's nice to have friendly people still. I met Miss Courtney once before because she used to work at one of the offices Mommy works with, but I was just a little baby then. Miss Lynn made me get on the silly scale again. It said 13 lbs 8 oz today. Mommy says we're going to bed early because Pop won't be home from work til very late tonight, after our bedtime anyway. She said he went to someplace called Indy for work. It must be far away. I think we'll feel better tomorrow.

Since I haven't felt much like putting up stories lately, I wanted to tell you that I'm feeling a little better, but still not much like playing like I did before. Mommy's feeling worse than me, I think, so I'm trying to be good so she can rest. Pop's been working all the way to bedtime, so I haven't been able to see him too much. I'll be happy when we're all feeling good and Pop can be home to play with me some more. My belly has been upset some when Mommy has put food in it, so that's not been much fun, but this morning I've not made any icky messes, and she's happy about that. I had some fruit and chicken with apples yesterday that was pretty yummy. Miss Louise came to see me, but I wasn't feeling good, so she just talked to Mommy about some things we'll work on soon. I'm getting ready to go see Dr. Y in a little while so he can check out my new belly thing, so I'll tell you about that later.

Today the doctors said I could go home, and Mommy and Pop were very happy about that. First we went to Grandma C's house to get the rest of our stuff and to pick up Belle. (She spent the day yesterday at work with Grandma C and Grandpa John...she followed Grandma C all around the church. Isn't that funny? Thanks for keeping her for me, Grandma C!) We went by the church on our way home to say bye to them. Then we came home. I napped most of the way home, and Mommy was proud of me for not crying or anything. When we got home, Pop unloaded the car and then left to play his game with the other guys. Mommy doesn't feel very good, so she wanted to rest. I played on the floor for a while, even though Mommy kept watching me from her chair to make sure I wasn't hurting myself. One time she caught me trying my old tricks. I surprised her good! But then my belly started to hurt real quick, and I think it's because of that thing that showed up on it yesterday. I told Mo...

Here's a shot of the new process: gravity bolus feeds through the new tube. This was at 10 pm last night. So after Braska took her 10 o'clock feed, while she slept, it seemed we were in good shape. I got to sleep about 10:45 pm, but was awakened to some very wet coughing around 11:15 pm, and this always leads to a mess. I got to her in time to witness the first round of vomitting. This was pretty similar to what had happened the night before when she woke up crying and such. Over the next 20 minutes, as we waited for the nurse that we had paged, she did it twice more, with more projection each time, even getting me in the face once. Sorry, I know it's gross, but if I had to live it, you can read it! She just screamed the whole time, and every squirm would agitate the g-tube site, which would hurt, and the cycle continued. We finally got her calmed down, had a whole big pile of messy linens and clothes, hers and mine. I propped her up on her side and covered her good, and sh...

It's been a nice evening. I haven't felt so icky tonight. Mommy has made me a bundled up place to lay so that I'm comfy on my back, so I don't mind it so much. Auntie Rachel and Mr. Patrick came by to see me, and Auntie Rachel brought me a pink panda! She has brought me a different kind of panda every time I've been in the hospital, so I have three of them now. Thanks Auntie Rachel! Then Grandma C and Grandpa John came to see me too. I showed them how I can play with some of my toys a little and I got to watch Baby Mozart again, which was fun. I decided that I'm gonna kick my foot like I always do even though it has a big thing on it and a tube in it. Mommy says that is there so they can give me medicines if they need to, but since they're not using it, I decided I'm just gonna kick it off. I'm trying hard, too! I just had another feeding at 10 o'clock, and now it's time for bed. Mommy's especially tired, so I'm going to try to sle...

Ok, I went to sleep for a while this morning, then I got up and there is something stuck to my belly. Mommy says it's the new way for me to get my food, but I'm not so sure about that plan. It hurts me! She says it won't hurt so much in a day or two, so we'll see. I can't believe they can just do that to me while I take a nap! We're in the hospital still so that they can keep a watch on this thing and make sure I'm feeling ok before we go home. Right now, I don't feel like going anywhere, so it's fine with me to stay here. I've been rubbing my nose though, and I noticed that there's no tube in it and no tape on my face. That's pretty good news, I think! Grammy Jan and Papa Beagle were here with the Squeaks, as we call them. They stayed to visit for a while. Grammy and Papa watched some Baby Mozart with me, and the Aunties played on their little game machines while Pop was playing poker or something on his computer. Uncle Ryan was...

We're up in the room now. She had a bit of a rough go right after she woke up, crying quite a bit in some pain, but after some morphine, she was able to rest better. We moved up to a room around 10:30 am, and we've got our own for now! And we've got the big, improved room that they just expanded, and we've got the big end of it. Side B if you remember from last time except it's bigger even than that now! Here's our icky I-just-had-a-hole-poked-in-my-belly look. Here's the floor physician checking on us in our new room. That's the G-tube...right there on the belly. And here's a much more pleasant baby, after we found Baby Mozart in the playroom. That's the way to keep her still for a while... Grammy Jan, Papa Beagle, Aunties Julia and Joy, and Uncle Ryan just arrived to check on us. She'll get her first Pedialyte in a few minutes, so hopefully that will go well and stay down.

She's done, just waiting to wake up in recovery. GI dr came out to say all went well and what to expect next. Didn't hardly get my "waiting" post up before she was done! Amazing! They'll page us to go see her soon. More updates soon.

Some pics of our morning so far... Getting the vitals done. The belly before shot... "Are you done messing with me yet?" Here we are in the waiting room. Thank goodness that SLCH has patient-accessible wireless!! She had a rough patch last night, unrelated to this g-tube stuff, but she had some belly pain or something that woke her and me for about 40 minutes last night. I was worried that she would be somehow compromised today, but they didn't seem bothered by it. Most of you know that she never cries--like she's had maybe 4 episodes her whole life when she's cried for more than 2 minutes. And she screamed for at least 20 minutes, then sobbed on and off and complained for another 20 or so. Very unlike her. BUT...this morning she's been peachy, except for residual snot in her nose from all the crying last night. She was in a good mood from when we got her up at about 5:45 am till we handed her over at about 8:15 am or so. Anesthesiology came to explain everyth...

We are headed to St. Louis this morning. Planning to watch the opening Bears game with the whole Bears-cheering clan. I'm dealing with the fact that there's not really any turning back now on the whole G-tube thing, but I have one further thing to deal with. I'm sick. This makes me crazy to get this way right when I need to be at my best. I've been dealing with a cold or something for a couple days now, sniffling like crazy, going through boxes of Kleenex, etc. I feel ok generally, just pretty tired, so I need this to go away completely!! I don't want to have to stay away from Braska's room. That would make me crazy not to be right there as she's getting out of surgery. My husband is able to go with us, so that's a huge help, but I want to kick this thing today! I appreciate your prayers for quick passing of this congestion. I just can't believe the timing! We'll update as often as possible tomorrow. Go Bears!

Today Pop took Mommy and me to Toro for lunch. It was so fun! We don't get to go out just the three of us very much...or ever, really. So it was a good day! Mr. Manny got to come over and say hi for a while, but I wasn't feeling very good, so I wasn't as happy as usual to see him. I even lost a little of my lunch on him. Sorry Mr. Manny!! We're getting things ready to go to St. Louis soon. Mommy says we have to go to the hospital for just a little bit, and I won't have to have the tube in my nose anymore! I wonder how I'll get my food... Anyway, the good news is that Pop gets to go with us! Yippee! Mommy is especially happy about that. Oh, and I've added some more blog friends, so be sure to check out the links over there to the right side. They're all really great!

Dr. R's office just called back, and we're on the schedule for this coming Monday, September 10 for PEG . Yeah, this coming Monday. Like 4 days from now. I'm ok with it. Little Miss Nebraska Larae has pulled her tube out twice so far today, and I'm taking that to be a little reassurance from God that this is the right choice and the right time. Yes, that's the band-aid in place on her face and the end that should be in her belly is on her shirt. She's figured out how to get her little finger in the 1/4 inch space between the tape and her nose... how's that for cognitive and motor skills? This afternoon, she just ripped the whole band-aid off her face and the tube all the way out. Then she yelled at me like I hurt her. *sigh* Kids... My husband is trying to work out being able to come with us, which I REALLY need to be able to happen, so please pray he can get the days off. I don't want to have to relay all this new info to him. I'd rather him be able...

Last weekend was a big one for me. I met a whole bunch of cousins I didn't even know I had. We went to a place called Iowa on Friday night after Pop got off work. Grandpa John, Grandma C, Uncle Ethon, Miss Cheryl, and Uncle Levi were there when we got there. It was nice to see Great-Grandma and Great-Grandpa M, especially since the whole party weekend was all for them. This year they had birthdays when they turned 80 years old and they're getting ready to be married for 60 whole years, too! So Grandpa John and his brothers and sisters threw this big party for all the family to come from all over and have a good time. We took alot of pictures, but here's a few for you to see what kind of things I did while we were there. Friday night when we got there, my Pop and my uncles and Grandpa John got down on the floor with me to say hello. They were kind of poking on my feet and on my tummy and playing with my ears and stuff. I don't know what they were doing really, ...