Saturday, June 28, 2008

Walking practice

On Friday, we went to see Miss Brandi again. She put me in this thing with lots of things that were holding me up in the air. First she put me on the walking thing like Mommy and Daddy use sometimes in the house, but then we decided to walk in the hallway.

It was kind of weird to be hanging up there like that, but it was ok. Miss Brandi was moving my feet for me and making me bend my legs. I just wanted to stand up tall or pick up my feet and swing.

We went for a long way, I think. But then I got tired. Right after this picture I got sad face and told Mommy I wanted to be done...and I told her really loud, too.

Friday, June 27, 2008

Mommy life: Where's Braska??

First, let me just say that for those of you interested in Baby 2, that info will be on the Mommy blog, as Braska's territorial about her space here. She's gonna milk this only child stuff for as long as she can, I'm sure. So if you want updates on that stuff, go there.

On to the stuff most of you prefer....Braska, of course! I looked up the other day and she was missing...gone from where she just had been. So we went a'hunting for her. Here's the journey...
And finally, just because it's fun.... more delightful giggles for those of you who can't get enough. If you haven't seen Grandma C's special giggle video, be sure to check it out. And just because it makes any day better....enjoy!

Thursday, June 26, 2008

So spicy it hurts

On Wednesday, Mommy and I had a busy day for sure. We met Miss Jessie for some lunch since she came to our town for a quick visit. We went to a new place that has food like our favorite Toro from home. It had some good salsa for sure.

Mommy gave me a taste and I liked it. She didn't even try it first because she was busy. Then she gave me some more, and I thought it was good. While Mommy was looking at the menu and we were waiting for Miss Jessie to come, I had a little more. Then Mommy tasted it too, and she said "Wooooo! That's hot!" She looked at me all surprised that I liked the spicy food, and she saw that I looked a little funny. My mouth was feeling all tingly and my eyes were leaking a little water. See?

See the water coming out from my eye? And my mouth was all moving around trying to stop the tingly?
Mommy gave me some cold waters, and it was nice in my mouth. She said she was sorry that she gave me the hot stuff, but I liked it alot, so it was ok. I even had more after I had some water! But just little bits...

Then we went to see Miss Stephanie so she could try to get me to eat some more. Mommy didn't get to go with us to the room this time, so she waited. I worked with Miss Stephanie and even ate some pudding for her. Mommy says she's gonna have to figure out how to watch so she can see what Miss Stephanie does to get me to eat.

Saturday, June 21, 2008

T-shirts and exercise

Thursday night while we were telling Grandma C and Grandpa J about our news, I wore my special shirt again. You can see how Grandma and Grandpa got excited on Grandma C's blog.

While the big ones were playing games, I found a new fun thing to play with. There's big things hanging in front of the back door and they are fun to make noise with and shake.

On Friday, I went to see Miss Brandi again. She helped me practice sit down and stand up and sit down and stand up and sit down and stand up. It was alot of work. She wants me to sit down different than I like to do it. She wants me to bend my legs in the middle, but I like to keep them straight and just fall back on my diaper. We did get to play with some fun toys though.

She had a super fun swing there! I sat in there and played. It was so much fun! She said I did good with staying up while she moved it around.

She has this crawly thing that they hooked me into. I tried to move my hands, but I don't like to move my legs like they want me to. I just want to sit up instead.

Here's a little movie of me trying to do the crawly thing.

There's also some other pics of me on Daddy's page too, if you want to look.

Thursday, June 19, 2008

Some big news

Little Miss Braska Bear decided to spring something on her daddy. Take a look.

Mommy report: 19 month update

It's hard to believe that Braska is coming up on 19 months in just a couple days. Just doesn't seem like that's possible. But what do I know... I've never done this before. I thought I'd kind of summarize where we are, partly for my use later, as the blog is my electronic baby book, and partly because there are a few of you out there who actually are occasionally interested in more info than just cute pics and giggles. Shocking, maybe.

Feeding: She's not. Period. That's the short version. The longer version is that she does sometimes accept food in small amounts and very particular situations, but it's very rare. She's still fed about 99.8% by her g-tube. She does accept drops of "milk" (Pediasure) off my finger, and sometimes dripped from a straw, while she's getting her feedings, but that's about the only consistent element of her oral feeds. We're working to get started with new OTs through First Steps and privately, and they'll focus on feeding. We've also been looking into a few intensive feeding programs around the country, but we've found that it's highly unlikely that our insurance will pay for any of that, so we're trying the outpatient OT direction first. Just as a reminder... she has no physical reason for not eating. She has no esophageal or swallowing issues. She just plain chooses not to. That kind of makes it more difficult overall. But we're working on it. And I also like to point out that her feeding issues are NOT at this point caused by her Down syndrome. Initially it was due to her heart issues which are related to the DS, but she's gone far beyond the "norm" for feeding issues with DS. I just don't want anyone to misunderstand and think that this is a "DS thing." Her oral motor skills are actually pretty good, with her speech and all... This is just a Braska thing.

GI/G-tube: Her button is doing well. The granulation that has threatened to become a bigger problem has retracted and is not an issue for now. It is a natural part of having a g-tube as the body keeps trying to get rid of that foreign object, but thankfully, we're in good shape for now.

Cardio/heart: She is peachy as far as her heart is concerned. We've had no problems, all good reports, and she has her next check-up with her cardiologist and possible echo in November. We have no reason to believe there will be anything but a thumbs up then.

Gross motor: She's just getting ready to start regular PT. She's showing interest in standing and movement, though she is pretty firm about doing it her way. She is not crawling at this point, and she's not yet able to pull herself to a stand. She stands when propped into that position and when she can hold onto something. She can scoot around on her rear end some, but she generally rolls to where she wants to be and then sits up to get into things. She'll be getting her Sure Steps in the next month or so, and that will help with proper form for standing and learning to walk. One PT that we saw recently for an eval stated that she had "the lowest tone" she had ever seen. I said that's fine, but "can you fix it??" (This refers to low muscle tone or hypotonia, a common physical characteristic of DS, but not exclusive to kids with DS.) We know we can get her there, she's just gonna have to work hard.

Speech: She does really well with her communication, though she still has delays on the typical measurements. She can say a few words verbally: up, mama, daddy, fish. (In case you missed it, see yesterday's post.) There are a few more that she's doing sometimes, but we're not yet giving her full credit yet: badger (weird, I know...see here), teeth, and yes. She can sign several, at least some version of the sign, but it's a gesture which means the same thing every time, and she can use them in context to communicate, not just mimicking: yes, no, hi, bye, milk, please, clap. On the receptive language side (things she understands but cannot express yet) she has a bunch. Our faves to have her do for "tricks" are to give kisses and hugs, give five, put things in or out of something, splash, kick, wiggle, play music, and show her teeth. She also can lay down or stand up on command (standing with hands to grab onto). We're very pleased with how well she's doing in this. We're hoping to start with our new speech therapist in the next couple weeks.

Weight/height: She's now 18 lbs 4 oz officially. She's 28.5 inches long. She's definitely small, but she's not all bones, never fear. But it is funny that she doesn't have that little round baby belly.

Teeth: She got her bottom front two first, then her top front two, and now she's got 6 coming in at the same time. And they take SO long to come in! She's working on the two on either side of the upper front two and the bottom front two, and also two molars on the top. She's getting them in a "typical" order, and so far, no super sharp ones, so that's nice.

Overall health: She still has never had a sinus infection, ear infection, or other common sickness. She may have had a cold once, but we're not sure if it was that or her teething. But I think it's great that she's never had to have antibiotics or anything prescribed for any reason except her granulation on the button.

So that's about it I think. If you ever have questions about anything, please feel free to email me. My email is always in my profile (over to the right under Contributors). I can't tell you how much it means that we have so many people who care about our little princess. Thanks for reading her stories and watching her videos and enjoying all her cuteness!

Just for those of you who prefer pics to details and jabber about therapy, here's a few more from the tiny pool days last week.
Now how do I get it back in here?

Sorry, they just don't come any cuter than that.

Wednesday, June 18, 2008

Stuff to say

We've been trying to take some movies of me doing some of my tricks, but sometimes I don't want to do them for Mommy right then. Here's a little bit for you to watch. But there's lots more. We'll practice more and then maybe I'll do all my tricks for you.

Monday, June 16, 2008

Daddy's Day Weekend

It was a nice sunny weekend here, and we got to see almost our whole entire family in two days!

First, I played in the tiny pool with Daddy on Saturday morning. He's usually at work when I play in it, so it was fun to have him there.

Then Saturday we went to dinner at Uncle Jody and Auntie Skye's house, and all the rest of Mommy's side of the family was there too. We're kind of a big crowd. This is Mommy, Papa Beagle, Daddy and me, Uncle Ryan, Auntie Joy, Grammy, Auntie Julia, Uncle Jody, Auntie Skye, Auntie Rachel, and Mr. Patrick.

After dinner, the boys went to watch TV and the girls were in the kitchen talking.

Grammy had some ice cream and cake, and she gave me a little bit. I decided I would taste a little, and it was pretty good. All the girls were doing "Yay Braska" and clapping for me when I took bites, so I took some more.

I think this is a funny one. Mommy and Grammy are making faces like mine. They're silly.

Here's a little movie of me tasting some more.

On Sunday, we went to Grandpa J's church and then went to Miss Cindy's house after so we could play in the pool and stuff. She has a pretty neat place!!

We were the first ones there, so we took some pictures before we got ready to swim. Miss Cindy has a neat place where some water falls down over some great big rocks, so Daddy showed it to me and told me all about it.

Then I sat all the way on top of the rocks by myself!

Then we sat by the pool and I stuck my toes in the water.

When Grandma got there, I told her all about it.

I got to ride in my float and on the big people float too.

It was pretty fun to be in the pool while Daddy, Grandpa, and the uncles were playing silly games.

After we got out of the pool, the boys played some games and Grandma, Mommy, and me went to the movie room in Miss Cindy's house to watch a movie. I played with Grandma most of the time so I didn't watch too much of the movie. When we got home, it was bedtime, but that's ok. It was a good day!

Friday, June 13, 2008

Therapy playtime!

Today me and Mommy went to a new place where I'm going to get to play with new therapists. I'm gonna have so many appointments to go to!! But Mommy will tell you about all that in a few days. We went to meet Miss Stephanie and Miss Brandi. They're gonna help me learn to eat and learn to walk.

This is Miss Stephanie. Her letters are OT. She's going to help me use my hands better and learn how to eat. I'm not sure about that eating part, but I'll give it a try. She did some fun stuff with me today while she was seeing what I can do.
She put me on this big bouncy ball, and that was fun. I love to bounce!

Then she put me on my back and started moving the ball! It was weird and felt funny, but I kind of liked it after a few times.

Then she put me on my belly. It didn't even hurt my second belly button, and it was fun! I was giggling and everything.

She gave me a thing that makes color on the end, called a marker. I haven't ever played with these before, so I wasn't sure what to do with it, but it was fun to bang on the chair. And then she let me play with the paper. My favorite!!

Then she put me in a chair and gave me some different foods. First she gave me pudding, and I took a little bit. Then she gave me some spicy bits of smokies, and she snuck it in my mouth. It was kind of yummy, but I don't like bits. I didn't get mad at her for trying though. It turned out to be kind of fun, even if I didn't really eat anything. She let me play with it some, but I don't like icky stuff on my hands. I'm silly that way!

After I was done with Miss Stephanie, I went down the hall to see Miss Brandi. Her letters are PT. She's gonna help me learn to crawl and walk. She told Mommy I need to get Sure Steps to help me, so we're gonna do that. We thought we might be needing them.
I'm going to go back to see Miss Stephanie and Miss Brandi every week for a while. Yay!