Thursday, August 30, 2007

Lots of smelly stuff

I went to see Miss Laurie today to see if I'm any bigger. And I am a little bit!

Mommy took me with her to another hair place, and they did some weird stuff to her. It also smelled really funny in there too. I kept getting tickly nose and Achoo's came out of me. While Mommy waited for something, I got to play on the fun chair with her. And there were lots of lights to look at too. Mommy looks kind of silly though.
While Mommy was getting her stuff done, I played with a new doll that I got in the mail today from Mommy's cousin Melani. Aunt Chris sent it to us. I like it a whole lot. Thanks a bunch!!!
Tonight I did some extra smelly stuff and Pop had to make some funny faces while he was cleaning me up. I pulled some tricks on him too. Just when he thought I was all clean and done, I made a little more mess. He was laughing and squishing his nose up at the same time.

Happy Birthday, Papa Beagle!

Mommy report: Overall update

I thought it might be time to kind of bring everyone up to speed on where we're at, in adult terms. :o) This might be a little long, but so many of you are so kind to ask about what's up that I thought I'd just put it all out there at once.

General health--Braska is doing well, hasn't been sick yet (except for rotavirus, of course) with any kind of cold or ear issue or anything, and for that I am SO very thankful. I think that's quite an achievement for 9 months, myself. Her heart seems to be pumping just fine after the repair, which is now 6 months ago. Seems like yesterday and 3 years ago all at the same time. Her thyroid is functioning properly, and her other labs have been good. EXCEPT for the last two draws which have shown increasingly elevated hemoglobin. (Very minimally elevated, though.) No one seems to be too concerned about it, but they are keeping any eye on it, I guess. We'll have it checked in 3 months at her one-year visits if not before. But we hope it's nothing. The only thing mentioned is that it might be an oxygen issue of some kind, which sounds like it needs to be checked out, but no one seems in a hurry at all and they all say it's nothing to worry about. So I won't, for now.

Therapies: occupational and developmental--These are going well. She continues to cooperate most of the time and is getting stronger, but it's all about when she decides she's going to do the next little thing. When she wants to sit, she will, and until then, there's not much we can do to entice her. The therapists have both noted that we have yet to find a toy that motivates her to do anything really. The only thing she reacts to every time is an open hand coming toward her face slowly. That's about the only time she will reach high with both hands and grasp quickly and firmly. She takes it directly to her mouth and gums like crazy. Any other toy may garner a gaze, and sometimes a lackluster reach, but that's about it. She's a picky one, that's for sure. She has become much more generally energetic in the last week or so, probably due to an increase in her amount of milk per day. Since she doesn't really indicate hunger at all, it's hard to know how much she needs/wants. Which brings us to the next category...

Feeding--Inconsistent is the key word. She will do several things, but none of them with any consistency. She will eat solids pretty well, but usually only once a day, and usually that is in the evening. She eats green beans with rice, sweet potatoes, squash, and beef with applesauce, each in little bits, and if she's in the mood that particular day. But she'll eat bananas and banana pudding about any day, as well as applesauce (not baby, big people applesauce), peaches occasionally, and pears rarely. She definitely likes her sweet things. She still refuses to suck on a bottle, but she will sometimes chew on it and swallow what she gets from that. She will take drinks from a particular sippy cup if they are given in small doses, but only a few at any sitting. Our big challenge is definitely to get her to take fluids, so most of her feedings are still done by NG. She's getting about 24 oz a day in 4 feedings, which we just went to about a week ago. Like I said above, she has responded to the increase in amazing ways with more playfulness, more general movement, wiggling, etc. She's always been happy and content, but she is now a bit more animated and less likely to sit still on a lap, which is good in the big picture, I guess. Louise was very happy with her first time to watch Braska eat yesterday, and she is optimistic that we'll be able to make strides toward being independent of the tubes, but probably not soon enough to avoid the G-tube. So about that...

G-tube--I talked to the GI dr's office again this morning and they're determining if we need to have any testing before we get on the schedule for the PEG process. (For those of you who are less "internet-familiar" you can click on PEG process to go to a description of the whole deal.) I would guess that we're looking at possibly the week of the 10th or the 17th of September to get it done, unless there are more things they want to check out first. I should get a call back later this morning about that. I'm resigned to the fact that it needs to be done, so it's ok. We'll handle it like everything else, learning as we go. Mostly I'm praying for no complications to what should be fairly "routine."

It's amazing to look back and see how far we've come. I find it hard to even remember how life used to be, and that might be a good thing in some ways. For now, we're moving forward and smiling as we go. She's a real peach of a kiddo, I must say, and I'm thankful for her everyday.

Thanks for taking the time to come by so often and keep up with us. It does so much good to my spirit to know there are so many friends out there who care enough to check in. And it's even better when we get to read your comments!!!

Wednesday, August 29, 2007

Therapy x3

This week has been super busy with therapy times. My new schedule is to have therapy three times one week then two times the next, then three times the that.

So on Monday, Miss Judy came. She tried to get me to sit up some and play with things. She brought a toy that I liked from before with bears on it. But it was hard to grab onto the bears since she had me sitting on a big ball. But I did it! I grabbed one!

Then she put me in a little tub thing. I didn't think it was too much fun, but it did make it easier to sit for just a minute.

On Tuesday, Miss Robin came, and she made me work pretty hard. She wanted me to make my arms strong, she said, so made me hold myself up for little bits of time and we rocked.

It was a little fun, but I got tired of it after about the 9th time!

Here's a little action if you want to see me go a little.

Then today, Miss Louise came to help me eat better. I thought I'd show her how good I can do, so I ate green beans, banana pudding (lots of it!), and drank just a little juice and a little milk too. Mommy told Miss Louise I was showing off for her. We're going to keep practicing. Miss Louise told Mommy some things that might help me like to eat better, so I think she's going to try them. Something about eating all together as a family, but I don't think we've done that, so I'm not sure what it means. Pop isn't so much a fan of it, but at least Mommy and I can have dinner and talk, she says. That sounds like fun anyway.

Saturday, August 25, 2007

Lights and angels

I like things that are bright or shiny and sparkly. I like toys that have lights on them, but I really like big lights. We have some big lights in our house in all of the rooms, so I like to look at them. Mommy doesn't like me to look at them for a long time, so she sometimes doesn't turn them on. But the lights in the room where we make the food are my favorite because they're the brightest ones. I sit under them when I play sometimes, but Mommy says she doesn't want me to hurt my eyes, so she turns them off. I just keep looking at them waiting for them to come on again. They are still pretty interesting even when they're not all lit up. Mommy caught me looking when I was supposed to be playing...but she still wouldn't turn them on for me.

Pop had to work today, so I didn't get to play with him as much as I like to. He's not supposed to have to work on Saturdays, but they are doing a big thing of some kind, so he's been working a whole bunch extra. We'll be glad when he gets to be home more.

Today after he got done working, he went to lunch at Toro without me! Mr. Manny wanted to see me, so Pop took me back to see him when Mr. Manny wasn't so busy. And guess what?! He had a present for me. Isn't that nice? It's a cute angel that says a night-night prayer.

I like it alot. Thanks, Mr. Manny!

It was nice to get to see Mr. Manny and Miss Chayo too. She always comes over to say hello to me when I'm there. It's so fun to get to see friends while Mommy and Pop have dinner.

Friday, August 24, 2007

Sleep and eat

This morning I was tired after I played in the bath for a while. So I napped in Mommy's office while she worked on things. Belle must have been tired too.
For lunch, Mommy and me met up with Miss Janet and Cede. Guess where we went?
Yep, that's right. To El Toro...where else? And Mr. Manny was there, so he came to talk to me a few times. I even sat with him a little bit. He's really nice to me! You should go there so you can see how nice he is. Tell him I sent you!

Thursday, August 23, 2007

All checked out

Today I went to see Dr. Y since I just had a birthday this week. He said I look pretty good, and I didn't even have to get any shots!

Miss Laurie weighed me, and I am up to 13 lbs 4.5 oz, so that's pretty good too. I'm very sad since Miss Laurie is not going to be there anymore. Who's gonna put me on the silly scale?? But I know where she's going, so maybe I'll go visit her sometime. Hope you like your new place, Miss Laurie! But I'm still a little sad.

Wednesday, August 22, 2007

Holding on

We have had a pretty busy week around here, and I've been taking some naps here and there, so I haven't had too much time to write stories for you. But today I did some stuff I was pretty proud of. Mommy's always trying to get me to grab things, and I just don't want to. I like to push stuff around, but I don't see why they want me to hold on to things.

I was playing on the bed in Mommy's office when I found some bells. They made a neat noise, and I usually like to watch them, but this time I thought it would be fun to make them go some more. So I found out that I could shake them around and they would make lots of fun noise! Mommy was pretty happy about it, and I think I might try it some more.

I also found out that my butterfly makes neat crunchy noises, so I've been shaking it around some too. Can you see my shirt? It finally fits me, Miss Mary! Thanks! I bet some of you family might like it too!
I haven't really wanted to eat much lately with the spoon, and I think Mommy's not happy with me about it. I did eat some mashed up bananas today, the big people kind, and that made Mommy happy. She always wants me to eat lots of bites, but I only want one or two. She says she's going to have to help me get food another way, and I don't know what that means. I hope it's easy like the way I have now. I have a new friend, Miss Louise, who will be coming next week to start helping me with food. Mommy says she's very good, so I'm supposed to behave really good for her.

Tuesday, August 21, 2007

Sad face, happy day!

Miss Robin came on Monday this week, and I was just not in the mood. I didn't feel very good, so I didn't do the exercises like I was supposed to. I did like the ball for a minute, but not long.

Today is my 9-month birthday!
I had to go to the hospital place where the lady poked me with something really sharp, and it HURT!!! Mommy held me but she couldn't make it stop. The good part is that they only had to poke me once, but then they moved it all around in there! They shouldn't be allowed to do that!!

Here's some pictures that we took 3 months ago and Mommy never had time to put together for everyone to see. I was littler then, but I thought you might still want to check them out.

(Note from Mommy: They are done in all black and white, then again in color, so if you like color, skip to the middle. :o)

Monday, August 20, 2007

Mommy life: Little Gabi's gone home

Little Gabi went to be with God this morning at 12:50. I can't imagine the pain her parents are dealing with. Please pray for their strength and comfort. Click here to see the post by her daddy.

Hug your precious ones today.

Sunday, August 19, 2007

Mommy life: Calling our prayer team for Gabi

I've recently found the story of little Gabi, and it has really caught my attention. She went in for the same surgery Braska had, and she has had complications in the hospital for more than 7 weeks now. I can't imagine how difficult this must be to watch for her parents. They are excellent examples of trusting in God through the darkest valleys.

She is at a very critical point right now, so I ask that all you that were part of the powerful prayer team when we needed it so badly would now pray for little Gabi and her family in Kansas City. Lord, send extra angels to watch over and comfort this family. Heal her little body, please.

Friday, August 17, 2007

Birthdays and buddies

I almost forgot about the birthdays today!

Happy birthday to Auntie Rachel!!

Happy birthday Miss Karen!!

Sorry I was kind of late!

Tonight Miss Jennifer and Olivia went to dinner with Mommy while I stayed with Pop, but then they came to see me at my house and we played some. Olivia is so fast! I hope I can move around like that someday!

Thursday, August 16, 2007

New place to play

Miss Janet brought a fun new thing for me to play with today. Cede doesn't need it anymore because she's a big girl, so I get to use it for a little while. Mommy says it will help me get stronger, and it has neat lights and music. I even figured out how to make the music go, so that's pretty fun too! Thanks for bringing it over, Miss Janet!

Wednesday, August 15, 2007

Hair day

This morning Mommy and me went to a place where a lady cut Mommy's hair. She said she had too many bad hair days, so she wanted to try something different. (If you want to see how the haircutting went, click here.) I was very good, Mommy said, while I waited for her to be done.

After we left the haircut place, we went to the baby store near by. That's not where you get babies, but where you get baby stuff. Just so you know. Mommy got me a thing to go on the Bumbo seat that will hold my toys for me to play with. She called it a tray, and I think it works pretty well. I played with it a little but then I had to take a break. I'll keep practicing though.

Tuesday, August 14, 2007

New baby friend!

Monday Miss Judy came to see me but I wasn't really in a very good mood to work on things. Mommy says I didn't do my best, but I was tired!

Last night I felt more like playing, but I was having a little trouble seeing the lights on my toys.

Today Miss Robin came to see me. Mommy helped me show her how I've been sitting in the Bumbo seat that we borrowed from my friend Cede. Miss Robin said I was doing a good job.

At lunchtime, we picked Pop up from work and went to see our new friend, Lucas. I'm not sure if that's how to spell his name, but it sounds like that. He is Connor's new brother that was born yesterday. His mommy is Miss Nico and his daddy is Mr. Matt. He surprised them by coming a little bit early.

While we were at the hospital, we got to see Miss Carla in the place where I was when I was a little baby. She took care of me for a long time before I got to go home with Mommy and Pop. I was kind of tired, so I didn't show her all my tricks, but she was happy to see me anyway. I'm glad I don't have to stay there anymore. This time I got to leave with Mommy and Pop, and that's good.

Sunday, August 12, 2007

New Toro friend

This morning I got to wear my new dress that Auntie Rachel brought for me on Friday. Pop said I looked like I was going to play tennis after church. I'm not sure what that means, but Mommy said it meant I was cute, and that's good!

Pop was playing with me before we went to church, and Mommy says its obvious that I belong to him. I wonder what she means.

At church, Pop sat me on the chair in front of him while everyone was singing and clapping. He helped me clap along, and I thought that was fun.

After church, we went to El Toro with Maddy and Grace and their parents. We were sad that Miss Martha wasn't there, but we met Mr. Manny. He was really nice, and he is Miss Martha's cousin. She is working at a newToro in a different town, so we think we'll go see Mr. Manny from now on. Mommy and Pop said we might get to drive over to where Miss Martha works for a special dinner sometime. For now though, Mr. Manny is my buddy! Hi Mr. Manny!

Mommy keeps trying to get me to eat still. She says lots of you are praying for me to eat better, so that must mean it's important. I don't get it, but it seems to frustrate Mommy that I don't eat more. I've tried alot of foods lately, but I only like little bits of them. And I don't like to drink much at all. I just don't see why I have to work on it so much.

Saturday, August 11, 2007

Pre-season practice

Pop says it's pre-season for the Bears, and they had their first game tonight. So we got dressed and ready to go. Uncle Ethon got me this outfit when I was a new baby, but it just now fits. Just in time for football!

Anyone know why Pop wouldn't let me wear this if it wasn't for Da Bears??
Oh, by the way...they won! Go Bears!

Friday, August 10, 2007

Family day

Today Mommy and Pop and me went on a trip to Mommy's Aunt Hyla's house. She lives kind of far away, so we rode in the car for a long time. We went there to see all of Mommy's aunts and uncles, sisters and brothers, and some cousins too. Everyone from Papa Beagle's side of the family was there except for Cousin Tracy and his family. Great Grandpa Don even got to come for a little bit to eat lunch with us. He doesn't always remember people, Mommy says, but he remembered me! I think that's pretty special.

I swam for a while in Aunt Hyla's pool with Auntie Rachel and Auntie Julia while Pop was watching me. I was kind of thirsty and there was all that water in there, so I just put my mouth right in there to get some, all open and everything. I guess Pop thought I put too much of my head in the water too quick, so he took me out.

I spent some time playing with Miss Skye too, while Mr. Patrick and Uncle Jody watched TV. Uncle Ryan was reading. The other ones just talked alot when they weren't in the pool.

Here's all of us together...
Thanks for having us all to your house, Aunt Hyla and Uncle Ron!

Tuesday, August 7, 2007

Working and growing

This morning Miss Robin came. We worked alot on sitting up, which I don't really like. I can't see her when I'm sitting that way. But I found a way...

She was just helping me a little bit when Mommy took this one.

Then she made me get on my knees and hold myself up with my hands. I can't look at them when they're so busy! But Mommy was super proud, so it was fun.

Miss Robin brings lots of neat toys, and today she had a little white dog that wiggles really fast and hums when you push it's nose. I like those kind of toys alot.

Later we went to run some errands that Mommy needed to do. Anyone guess where we are here? We were picking something up for Mr. Tim who is in Belgium.

And then we went to see Miss Laurie at Dr. Y's office for the silly scale again. Mommy was happy because I got out of the 12's. I'm finally 13 pounds!

Mommy report: Biopsy results and a GREAT post

I got a call from Dr. R (the GI) last night, and he said the rectal biopsy was negative, showed her nerve cells are all as they should be, so no Hirschsprung's here! Good news for us! I knew it wouldn't be, as she just didn't fit the symptom list consistently, but it's good to know for sure. He said that since she is improving, although slowly, with her feeding, we'll give her a few more weeks and reevaluate then regarding the gastrostomy (G-tube) procedure. I still hope we can avoid it. Her lab work looked ok, just a few things that were only the itsiest bit off, folic acid and B12, so were going to follow up with Dr. Y, her pediatrician to keep watch on that.

Also, I want to encourage you to take a few minutes and read this post from Michelle at Big Blueberry Eyes. I know many of you read her blog regularly, but she does an exceptional job at responding to some questions about raising a child with DS, and I think it is SO well stated that I encouraged her to see about publishing. If you have now or ever do have a friend who struggles with a prenatal diagnosis of DS, or even finds out at birth like we did, please share this with them. I think it could save some beautiful little lives. Plus, it is good for us parents, too. Fantastic, Michelle!

Sunday, August 5, 2007

Splashin' Sunday

Today Pop covered me up with pillows when Mommy wasn't looking. It was kind of fun and felt all squishy, but I couldn't see very good.

Mommy and me got in the pool today for a little while, and I tried out my new suit. Thanks Auntie Rachel!!

It was a good day for swimming, but Mommy tried to keep me out of the sun most of the time. We have a shady corner where there's a new tree growing bigger, so it makes a nice place for me to play.