Saturday, June 30, 2007

To Grandma's house we go...

This morning we went to Grandma C and Grandpa J's house because they needed to see me do some new tricks and things. I also got to see Uncle Levi and Uncle Ethon, and they are always fun to play with. They are Pop's brothers, and some times they act silly when they are in the same house.

Here's Uncle Levi when he came home from work to see me for a few minutes. He looks so handsome, doesn't he?! I guess Pop was trying to rock his baby brother...that's just silly I think.



Here's one of my new tricks, too. Everyone seems to like it.


Friday, June 29, 2007

Mommy report: Good news, hard reality

The good news--Braska broke the 12-pound mark...finally! She weighed in today at 12 lbs 4 oz, up from 11 lbs 14 oz on Monday. She was 12 lb 1 oz back at the end of February, just before surgery...at 3 months old. Amazing.

The hard reality--Because this gain has come during the time that she's been on the tube (since Tuesday very early morning), the point has been confirmed that she needs to have a supplement method. Unfortunately, we can't continue with the NG much longer, for several reasons. So we've made an appointment with a gastroenterologist at StL Children's Hospital to look at transitioning to a G-tube, hopefully mic-key style. That's set for 07/12/07, so we'll see. I've got mixed feelings, but I think it's the right thing to do in the end. I kind of wish we'd have done it before, but we kept hoping we could get her to just take enough on her own. She's come so close, but just can't seem to stay consistent.

So for now, she'll remain on NG. She's leaving it alone pretty well since it's not in her line of sight. Wish we'd have thought of that before... She's happier, more playful, and less content to just hang around. Guess that's what happens when she's getting fed properly. Wow...another feather in the mom cap. Glad we caught it before she got really sick, thank goodness.

A new record!

Today Mommy took me to get on the silly scale again to see if I got any bigger. And I was! I'm bigger than I have ever been!


I talked to Miss Amiee again today while we were there. It's sad that she'll be gone to another place soon.



Thursday, June 28, 2007

Chatting with Pop



The last few days

Mommy's been pretty busy and kind of tired when she's done being busy, so there's some stuff we haven't been able to put up stories about yet. So I thought I'd just put up the pictures and tell you about them anyway.

Tuesday 6/26

I've been playing a new little game with Mommy where I look at her at the same time as my hand...she called it bowtie taxing or something like that that means doing some stuff all at the same time.


Tuesday night we went to Toro with Connor and his parents.


After dinner, Pop and Mr. Matt went to play cards. Miss Nico, Connor, and Mommy and Me went to our church to the playground inside. It's a big new place that lots of the kids like. We were the only ones in there at that time, so Connor had fun just running all over.


Wednesday 6/27
I napped this morning in my new favorite place, on one side of Mommy's lap against the big puffy part of the chair.


Miss Andrea came by today with Josiah to say hello.




And we went to the store where we got Pop's computer monitor to give it back to them because he wanted a bigger one. So we got a bigger one. It's really, really big.

I had a pretty good time just hanging out in my eating chair too.

Wednesday, June 27, 2007

Mommy life: Laughing at Pop

Muncher recounts very well a "peril of fatherhood" that occurred recently. I was there for the actual event, but I think I laughed more at the re-telling. Enjoy!

Perils of Fatherhood

Thanks Miss Tricia and Georgia!

Today the man that brings our mail to us brought us a box with a bunch of stuff in it. Mommy said it was from Georgia and her mom, Miss Tricia. They sent us a lot of stuff to help me get my food with the tube. Georgia doesn't need it anymore because she likes her food more now, I guess. Mommy told me she might just send me to see Miss Tricia so I can learn that too. As for this tube, I don't like it much, but Mommy says I have to have it for right now.

So thanks for the stuff!!! That is very super nice of you! Hi Georgia!!

Tuesday, June 26, 2007

Happy 18th Birthday, Auntie Joy!!!

Mommy report:Back to the tube

(Fair warning, possible TMI...I don't usually talk much about breastfeeding, but for the purpose of explaining the situation, it's necessary. I'm not all that comfortable with it, but maybe sharing will allow some good advice from some of you.)

So after an exciting discovery that Braska had gained 2 oz over the last 12 days, the afternoon yesterday started going downhill. She started acting a bit irritable and uncomfortable to start with. As I did my general analysis of the possible causes (yeah, I'm that way), I realized that previous to the 4 days that she's been sans tube, she had been consistently on it for 3 days, during which we'd filled her as full as possible. I had meant to have her weighed at the end of those three days, but I didn't get up to the dr's office to do it. That's important in that I think she probably had gained more at that point and is now down a little to the current 11 lbs 14 oz. I'm judging from how she fits in her clothes and her demeanor. The other factor is that while she's been nursing and taking solids somewhat better than normal the last few days, I have been worried and now feel sure that she still is not getting enough fluid since my milk supply is down.

Last evening while we were at Randy and Karen's she got quite fussy, and in a different way than usual. I started reviewing all the recent situations and was concerned that she was just plain hungry and possibly starting to feel dehydrated. She ate pretty well before bed, so I thought I'd address it further today. Two things changed that. First, I got up to pump at about 1:30 am (yes, after seven months...still pumping during the night...grrrrrr). It had been about 4 hours since the last time, instead of the usual 3 hour cycle during the day, but I only got about 40 cc or just over one ounce total. That's not a good sign, per past experience. This has happened the last couple nights, with the total decreasing each night. But she has been doing pretty well nursing during the day, seeming to get plenty each time, making plenty of loud swallowing sounds, which she didn't do previously, so I hoped that she was taking in enough. Then, she woke up at about 3:00 am. This is important because she doesn't wake up at night. And when I got her up, after I'd just pumped less than 2 hours before, she was anxious to nurse, so I let her try, and she seemed to be taking in some. That is, until she spit up everything she'd just had. She started throwing a fit, but made no tears. This was much the same as the last time she was dehydrated, although not as bad as then, thankfully. I woke up Muncher to walk with the screaming baby while I got things ready for the re-tubing. Once we got the tube in and food started, she calmed down and went back to sleep. I filled her full then and once more during the night, and this morning, although she's not back to her playful self, she's better and seems to be "juicing up" again.

So it's back on the tube for now... if it turns out to be more than a week or so, we'll have to walk the tough decision road toward the G-tube. In the meantime, I'm working to increase my supply to see if we can try it all over one more time. Here's hoping!

Feeling icky but getting stronger!

I didn't have a very good night last night, and I think Mommy's going to tell you about that, but this morning I didn't feel quite as happy about playing as I do most of the time. I just know that I had to have my tube in my nose again during the night. But it's good because now my belly's good and full.

Miss Robin came this morning to help me with my exercises. I used to think it was all play, but it's starting to seem kind of like work. I showed her how I could roll over from my tummy to my back, but that's just because I don't really like to be on my tummy unless I'm sleeping. I did think the color fan thing that she brings to play with was pretty neat, so I looked at it for a while.


She also had me practice holding up on my arms, which I don't like very much, but I tried hard to do it for a while, and Mommy and Miss Robin were very happy.

Miss Robin was helping me, but I was working pretty hard too!

Monday, June 25, 2007

A little bit up

This morning Mommy decided she wanted to see if I had gotten any bigger on the silly scale, so she took me to see Miss Laurie, Miss Amiee, and Dr. Y. I haven't had my tube in for about 4 days, so she wanted to see if I'd been eating enough to get bigger. And guess what?!?!?!? I did get a little bigger!

(11 lbs 14 oz. That's up 2 oz from 12 days ago.)

It was pretty exciting that I was up a little bit, even without my tube lately. Mommy was pretty happy for sure. It was sad to find out that Miss Amiee is going to be not working there anymore soon. She's going to work closer to her house, which Mommy says is always nice, so I guess it's ok that she goes. We took pictures to make sure I can remember my pals though.

(Miss Amiee, me, and Miss Laurie)

And since Dr. Y wasn't busy, I thought I'd like to have a picture of him, too. He's good at taking care of me!


Tonight we went over to Maddy and Gracie's house so Mommy and Pop could watch a funny show with their parents. I wasn't feeling very good, though, so I didn't get to play much. My belly was hurting, so I told Mommy and Pop all about it. Maddy and Grace had a good time playing though.

Sunday, June 24, 2007

New friends

Today we got up, got dressed, and went to church like normal. After church, it was nap time for me and Pop. This afternoon we went to a picnic with alot of other kids who have an extra chromosome like me. Mommy says this is the local group of families called the Down Syndrome Network. Mommy and Pop got to meet some of the parents and talk about stuff. I got to see alot of kids who liked to say hi to me alot. It was pretty fun, even though it was really hot outside. I would show you a picture, but Mommy got so busy she forgot to take any of the new friends. There were games and food and lots of kids having fun. I think I'll be able to play games someday, but for now I just sat with Pop and watched.

Mommy life: Thank you notes

It's no secret that life is crazy in our house lately. And it's no secret that we have been blessed by gifts of all kinds from all over. So here's the issue... I was raised to always send thank-you notes for gifts and acts of kindness. Over the past seven months, I have sent many a note, mostly mass produced with info about Braska and with little personal notes and a signature, in order to keep up with them with what little spare time I can find.

I've fallen behind again, so let me just say to all of you who check the blog often and are "due" a thank you note.... We appreciate greatly every gift, whether it be for us as parents, for Braska to play with or wear, or to help with her medical bills. Thank you for your patience. That you think of us and choose to share with us is humbling and truly amazing.

So know that I'm still working to get caught up. I've got a batch going out today, in fact. If you know of anyone who would like to receive an official acknowledgement sooner rather than later, please feel free to let me know. I'd rather be reminded than to forget and offend someone who has been so kind as to share with us.

Saturday, June 23, 2007

Mr. Tom and Miss Betty

Today I got to see some more friends who came to my house to visit. Mr. Tom is our friend Mr. Brent's dad, and Miss Betty is Mr. Tom's wife. They live in Missouri, kind of close to the town where Grammy Jan and Papa Beagle live, and they come into town to see Mr. Brent sometimes, and it's so nice that they come to visit Mommy, Pop, and me.

Today they were on their way to Indiana, so they came by to spend a couple days with Mr. Brent. Thanks for coming by to see us, too! Hope you have a fun time in Indiana!

Friday, June 22, 2007

Extra visiting day

This morning I woke up in the place where we borrowed a bedroom last night. I forgot where I was at first, but then Mommy was there so it was ok. We went back over to see Macie and Morgan again, which was so fun! We thought we were only gonna get to see them one day, but we got to play two days!
The first thing we did was pose for pictures since we forgot to do it yesterday. These are my friends Morgan and Macie.

Then their daddy, Mr. Justin, came home, and he played with me on the floor. Morgan wanted to hold me some so her daddy helped. I like cuddles, so it was fun for me.
Macie and Morgan took turns sitting in my seat, and then Morgan tipped Macie right over!
Finally it was time to go, so we said goodbye and went home. It was nice to see Pop for a little while before he left to play cards tonight.

Thursday, June 21, 2007

Goin' a'visitin'

This morning Mommy and I went to see our friends that live in a different town . It was kind of far away, but I slept most of the trip. We went to see Miss Julie, Macie, and Morgan. Mr. Justin was out of town. We just played and stuff there. They're moving farther away soon, so we wanted to get in some more play and talk time before they left. Mommy forgot to take pictures today since she was busy talking with Miss Julie and everything, but we're going to see them tomorrow so we'll take more pictures.

Grammy Jan, Auntie Joy, Auntie Julia, and Uncle Ryan have been at camp this week, and it worked out kind of neat that they were doing a show tonight in the same town where Miss Julie and the girls live. Mommy says kids from churches all around come to this camp and spend a few days learning songs and plays and stuff. Then at the end of the week, they do shows for everyone. We decided we would go and surprise Grammy Jan and watch the show. They were really surprised to see us, and the show was very good.

Here's me and Grammy.


Mommy's Auntie Hyla and Uncle Ron came too, so it was nice to see them again. I sat with Auntie Hyla during the show since Mommy was taking pictures and stuff. When it got all quiet, I took a nap, too.


First it was Uncle Ryan in the band. (back row middle)


Then it was Auntie Julia's turn in a funny little play. She was very funny.


Here's the choir. Auntie Joy and Grammy were in there. It sounded really good. I liked the music alot.


Here's Auntie Joy (left) and Uncle Ryan (red shirt) in a little play, too. They were both really good. They were supposed to be on an elevator or something.


After the show, there were lots of people who wanted to see me and everyone stood around and talked alot. So when we left, it was time for me to eat and go to bed, but Mommy was kind of tired too, and she said she didn't want to drive two hours to get home in the middle of the night, so we just went to a place where they let you use a bedroom.


It was really nice, but we were tired, so we just went to bed. I liked the bed alot, it was so comfy!

Wednesday, June 20, 2007

Just a quick note...

We've been a little busy, but I wanted to show you a picture from today. We mostly were busy at home, but we ran out to the store and saw some pretty flowers. I thought they were nice.


We're going on a trip tomorrow, so I'll tell you about that then.

Tuesday, June 19, 2007

Workin' out

Miss Robin came to see me this morning. She makes me work pretty hard now. I practiced rolling over, and she seems to have figured out my game. I heard her tell Mommy that I know how to do it, but I just like to be on my back so I can see my hands. How did she know that?!? So she made me show her that I could do it, and it made everyone happy to see me flip over. But I don't really like being on my tummy, so I just leaned over to the side and *flip* I'm back on my back. I hope Mommy doesn't think I'm just gonna do this whenever she wants, like to show off and stuff. I'll do it when I want to, though.



Miss Robin also brought a neat thing that makes sounds when you push on it, or when you lay your head on it too. It was fun but it's alot of work to move my arms when I'm on my belly.


Miss Robin decided to help me get stronger in my arms by doing some exercises that Mommy said were kind of like baby push-ups. I didn't care for these much, but Miss Robin said I did pretty well at them.

Monday, June 18, 2007

Monday again

This morning it was time for Miss Judy to come visit again. This time she brought me some pretty cool toys to play with. This one was a favorite. I could just touch it and it would make sounds. I like sounds. Mommy's going to see if she can find where to get one of these, but she said they were around when she was little, so they must be really, really old.

This was another fun thing. It kind of made some noise too, but it moved pretty neat too.


I figured out how to have fun with it with my feet too!!


Mommy and I went to the store this afternoon. We went to pick up some things, and we got a neat thing for me too! I'll tell you about in a minute... Here's me at the beginning of shopping.

Here's me at the end of shopping.

When we got home with our stuff, Pop put my new thing together. It's a chair that I sit in to eat. Mommy says it will help me understand when it's time to eat. I don't know about that, but it is pretty fun to sit in it. It has the same neat pictures on it as my car seat, my wheels, and my play place where I take naps sometimes. Can you think of anything better? Hmmmmmmmm.

I had a nice dinner of macaroni and cheese as my first meal in the new chair. Mommy thought it might be good to try something my Pop likes, since she says I eat just like him. And Miss Judy said this morning that it might work. I liked it ok, so I think I'll have some more tomorrow!

Sunday, June 17, 2007

Pop's day part 2

Happy Pop's Day to my bestest Pop!!!!
Today we went to church later than we usually do, because we were tired. I think I looked pretty good, too.


This afternoon, me and Mommy and Pop got in the pool for a while. It was pretty fun. I have a new little floaty thing to ride in, but Mommy says it is still too big for me. We played for a while, and it was nice. The water felt like bathtime water, and Mommy says that's because it's been so hot here. Before we went outside, Pop put a bunch of stuff all over me so that the sun wouldn't make me too hot.


Miss Karen, Mr. Randy, and Grace and Maddy came over tonight. Mommy cooked on a big box with fire outside for dinner. Maddy put her cup in my swing for a ride, and Grace thought it was funny.

Tonight Pop went out to his hammy while he made his Father's Day calls. I think he likes it!