Thursday, November 29, 2007

Mommy report: One-year appointments

Sorry to be getting behind in posts.... want an excuse? Here's my best attempt...

The important part of our last week was the One-Year Day O' Visits, as I've been referring to it. Tuesday we spent all day, 9 am to 3 pm, at St. Louis Children's, seeing multiple people in 7 different visits. And no, there was not time for lunch, it was just one to the next. We're hard core.

First we saw the audiologists, where we went in the big walk-in soundproof box so that Braska could ignore pretty much every attempt to get her attention. She liked the lights but she wouldn't cooperate with the process as they wanted her to. So nothing conclusive there. I have no worry about her hearing. I can whisper across the room when I return from being out of the room for a while and she immediately responds and looks. She is the queen of selective hearing though. Great at ignoring, that one. They want to try again in 3 months.

Then it was back to the waiting room to wait for the ENT. Check out Miss Big Girl.

He was great. He held her for a few minutes while he talked to us, saying that way he wanted to get it in while she wasn't yelling at him.

When we went into the microscope room so that he could check out her ears and clean out the wax, she didn't have such a fun time.

The nurse held her head while I tried to console while holding her hands. She wasn't fooled one bit. Luckily, she recovers almost immediately when the irritating factor goes away. Our pediatrician hasn't ever been able to see her eardrums since they're so small, so it was nice to have someone actually be able to see them and verify that things are ok. He said she did have a bit of fluid in one, so we're going back in 3 months to have another look. He gave us the whole speech about the probability of tubes in her future. No surprise there.

Then it was downstairs to wait for the DS center appointment. Starting on the scale.... 14 lbs 12 oz! Slowly climbing...very slowly.

We first got to see the resident Dr. A, who was very nice.

The cool thing about the DS center is that they make everything so darn easy. Alison is the nurse practitioner who also handles the schedule coordination, and she has also been the one who has put in lots of extra time with me to solve some coding issues with our insurance that we've been working on since her six-month appointment. She schedules everything, all the specialists we need to see, in one day, all lined up. There's no way I could get that accomplished without a big ole' headache, so that's HUGE to me. One even got cancelled a couple months ago (she schedules them 6 months out) so she rearranged all the others to the new date.

Dr. G is the genetics/DS specialist that, with Alison, sees the DS center kids on Tuesdays. We didn't see her this time, but we had a good visit with Dr. A, the resident, and with Alison too.

It's kind of neat because for a few visits-- nutrition, cardio, and genetics-- we sit in the same room and they come to us. In between, Pop climbed up on the table with her to sneak a nap.

Alison said she thought Braska looked great, that she had "thrived" since her visit 6 months ago. The issues we brought up--teeth, spine, and nutrition--were dealt with and she got us hooked up with others when necessary. (We'll see the dentist there in a few months probably just to set a baseline and for a jaw evaluation. We'll see the nutritionist soon again. And the spine is was something brought up by the OT, concerned about how it protrudes when she sits up. Alison says it's a combo of her lack of muscle control--slouching--and partially due to her just plain being so darn skinny.)

Dr. J, cardiologist, came in and checked her out. He said everything sounded ok. He confirmed that we didn't need to do premed, meaning that we don't have to premedicate her for dental things, etc. This is new with the cardio guidelines, as up til about 8 months ago, it was still protocol to do premed in this type of case. He also said he didn't think we needed to worry about the RSV injections, Synagis, this year. We didn't have them last year either as she was too far into the season when we had the chance. Unfortunately, our pediatrician's staff (temps) sent in the preauthorization incorrectly so the insurance denied the series of injections this year. I could appeal, and I could win, but it's a very tedious process, so I thought I'd see what the docs thought before I went through it. Dr. J said, of course, that she could get RSV and could get quite sick, but it would not be life-threatening like it would have been before repair of the AV Canal. And since she has shown no symptoms of continuing issues after the repair, and since she's not in day care, doesn't go to the nursery at church, and is rarely around other little ones in close proximity that she isn't considered high risk. Since we did the super-careful-winter-protective-procedures last year, we'll just reinstitute those and save her the pain of the shots. I'm actually glad we can skip them.
Dr. J sent us for an echo to see how she's looking in there. It went well, with help from Pop and me trying to keep the hands busy and away from those appealing cords and cables. Dr. J came back after and said she's in good shape. No problems at all. Love those reports!

Then it was off to the eye center and Dr. R. She got dilated and was pretty good for the exam. Her nystagmus (wiggly eye) is much better, but her esotropia (crossing inward) has increased, as has her farsightedness, so we got the dreaded prescription for glasses. It's dreaded by me, anyway. I can't imagine how we'll keep them on. And I'm a little sad to put something in front of that little face, but I'll get over it. I'm working on finding frames. We go back to Dr. R in 3 months.
And finally, it was to the lab for thyroid and CBC. She's a champ, and the phlebotomists there are SO great. They are quick! And she's usually such a hard stick. Got the results for this today from Alison, and everything's peachy. Yay!
All in all it was a good day. She lasted pretty well through all the prodding, poking, dressing, and undressing. It was SO helpful that M was able to be there to help out.
A week from today we go back to St. Louis for follow-up on her g-button and a swallow study. Seriously, I don't know why I don't just move back...

Saturday, November 24, 2007

Car time, friends, and more family

Saturday we played more games at Grammy and Papa's house in the morning while Mommy got ready to go. Grammy helped me on a horsey that bounces. I think it'll be more fun when I get a little bigger. Mommy says this toy has been around for a very long time.

Then we left and drove a while to Mr. Justin and Miss Julie's new house. They live farther away from our house now, but they live closer to Grammy and Papa's house, so we went to see them for a quick visit. I played with Macie and Morgan, but their little sister Millie is still in Miss Julie's tummy. I can't play with her yet. Morgan was napping when we left, but Macie came down to tell me bye-bye.

When we finally got to Grandma C's house that night, Miss Karen A. was visiting from Kansas. Mommy always tells me how good Miss Karen took care of us when I was a tiny baby. We miss her since she moved away far. She brought me a birthday present! I got to open it and play with the paper, which is my favorite part. It was some neat music CDs and a cute machine to play them in.

I played for a while in all the fun, crunchy paper that was in the big bag. I showed Miss Karen A. how much I can play now since I'm bigger than when she was here last time.

She had to go back to Kansas, so I didn't get to see her after I went to bed.
Thanks Miss Karen!

Friday, November 23, 2007

Holiday after holiday

Today is Christmas. Yesterday was Thanksgiving. That's what Mommy says. I'm not sure that's right, because everyone else seems to think that Christmas is a little bit away. She said it's because we won't be seeing Grammy and Papa and the aunties and uncles on this side of the family at Christmas. So here's how it went...

Auntie Rachel and Mr. Patrick came on Thursday morning. We got to play a little and I showed her how cute I looked in one of the outfits she got me. I found a nice, comfy place to sit, too.
She wanted to see the beginnings of my teeth that showed up. Yup! I'm getting teeth! So I was checking out her teeth too.

All Mommy's sisters played with me and took lots of pictures.

Auntie Joy and I watched some Baby Einstein.

After Thanksgiving dinner, and after alot of football watching by the big people, we decided it was time to open presents early. We didn't want to wait til the morning time. Uncle Jody was there and he had to go home, so we wanted to open while he was there.

This was part of my present pile. Isn't that just silly!?!

Pop started opening one for me and then he let me try some. I liked the crunchy paper.
I got alot of neat warm clothes from Auntie Rachel and Uncle Patrick. I also got some fun books and toys from the aunties and uncles.

Today we played some games this morning, well, I watched while they played on something that sounds like We. The big boys played lots of funny games with it and I cheered for Pop.
Then we had Christmas Dinner. Two big dinners in two days! Grammy is a good cook, though, so we had lots of yummy food both days. Since Uncle Jody wasn't here today, I got to sit in his spot. It was fun to sit at the table. Pop even gave me some food, but I didn't care about that. I just let it sit on my tray. I was having fun just making noise on my tray.
Auntie Joy read me some books while the big kids played some more.
Then Auntie Rachel and Mr. Patrick left to go home. Tomorrow we'll drive some more in the car and go see some friends. Then we'll go to Grandma C's house. I don't think we'll have more holidays, though.

Wednesday, November 21, 2007

My birthday!

This morning when Mommy came to get me out of bed, she said it was my birthday. That means that one year ago I came out of Mommy's tummy. She said today was going to be my day every year. When I get bigger, I'll get to do some big kid fun things, but since this is my first one, I'm just gonna hang out with Mommy and Pop as we go to Grammy and Papa's house. That sounds like a good day to me!

Pop's cousin Larae (yeah, that's right..she's got my name!) from Alaska sent me a really neat blanket for my birthday! Isn't it pretty?! I love the bright colors and I just look at them and roll around on it. It's so fun! Thanks Cousin Larae!

Since we're leaving to go to see family today and we'll be gone for a bunch of days, I will try to tell you about all my fun times in a few days. Happy Thanksgiving everyone!

Sunday, November 18, 2007

Surprise at church!

Today I got to see a friend from when I was a tiny baby. Miss Dayna was at church!
We didn't even know she went to our church! She said that her family just started coming a few weeks ago. Isn't that fun?! She was so surprised to see me and said I was so big! Mommy gave her a few of my new pictures, and she gave me some good hugs.
Tonight Mommy and me went back to church for a soup supper. I'm not sure what that's all about but there were alot of people and they all kept talking about all the pie they were going to eat. I just walked around with Miss Debbie, then I fell asleep.

Saturday, November 17, 2007

Good morning

This morning when Mommy came in to get me out of bed, I was watching for her.

Friday, November 16, 2007

Simulpost: Time to DO something

For those who are skimming and in a hurry, read this... if you are one who is planning to get Braska something for Christmas (I realize that's not all of you, of course) please grant us this wish... FIRST donate to one or more of these Angels, then if you choose, feel free to wrap up something for her. But I would largely prefer that you spend your money on them...they need every penny, and we simply don't "need" for anything. If this means that Braska has no "actual gifts" under the tree, then so be it! And the same goes for gifts for me! Let us know who you donated to, so that we may add them personally to our prayer list of special friends. Here's why...

Lately, I've had an especially sensitive heart toward the kids of the world, especially disabled, who are in such poor conditions in institutions and orphanages. This is a new thing for me, not new that I care, but that it's been bothering me so much. Braska and I have been praying every single night for these children, that God would comfort them and somehow not let them experience the pain and emotional neglect that is inevitable. I've gotten where I can't hardly think about it without crying and just wrapping Braska up in big hugs. No child should have to live without interaction and human contact. It's making me have a whole new view on adoption, even though I've always had a heart for it.

The stories are here if you want to familiarize yourself with some of the problems. It's heartbreaking, and I've been asking God to show me where I can start to actually DO something. I am tired of just hearing, crying, and feeling helpless. So this is where we start.

Others are DOING something as well...Meredith and her family at Cornish Adoption Journey is right now waiting the call to get the time that they will fly and pick up precious Aleksa, and there are other adopting, too. Michelle at DownBlogger had a great post and a call to action as well. Several others of you have posted to spread the word.

For me, this is the first thing that popped in my mind. If you were going to pick up a cute outfit for Braska that is $15, then please send that $15 to Reece's Rainbow's Angels. If you want to get the outfit too, then go right ahead. :o) I'm not trying to take the gifting joy from you, but I want to share a more important joy with those who desperately need it.

At least take the time to go look at them, see that they're kids too. Consider donating as a family, DS network, Sunday School class, small group, or neighborhood. They want no more than to be loved, and every child deserves that...every child.

Thursday, November 15, 2007

My tube is gone

Today we went to St. Louis but now we're home. It was alot of time in the car, but I napped a little and I talked to Dollie some too.

Here's some stuff that we did:
They put me on the silly scale, and I was 14 lbs 10 oz, so I got a little bigger.

Then they tried to put a tight thing on my arm, but I didn't want to wait for it, so I decided to play with it instead. The nurse lady just decided that she didn't need the numbers anyway, so she let me play.

I also found plenty of the toys I like that Mommy calls tubes and cords. There were lots of them there!! There was one on my bed that I liked alot, and I kept playing when Mommy was trying to keep me still.

Isn't this a neat curtain? It has a picture on it that looks just like the big silver thing that we see by the big water river when we go to St. Louis!

After they did some stuff to my belly that I didn't like very much, Mommy came back in. I felt better then, and I even told her Hi.

Mommy and me went to get some lunch downstairs.

Then we went to see Grandpa J after he had been to the hospital today too. Uncle Ethon was there, but I didn't remember him so I got a little scared. Mommy said we'll see him again next week, so I can remember him then.

After we got home, I played a little on the floor. There's a new thing on my belly. Where did that come from??

Simulpost: All done

(I don't have time to write two for those who check both, sorry to be repetitive.)

Wow, that was quick. I laid her on the bed, walked out, played a little solitaire on my phone because they said I wouldn't have time to even log on to my computer, and they came to get me in about 9 minutes. That's quick. They didn't even give her ANYTHING, just pulled the PEG out (that HAS to hurt!) and then put the new button in. I'll have pics later, but for now, we're good and grabbing a bite to eat before we swing by Grandma C's house on the way home.

They said she screamed when they held her down and such, but by the time I returned to the room, she was calm and happy and not even red-faced. She is such a tough cookie! Thank you, God, for such a tough little girl!

Made it early

I'm at the hospital today, we just checked in, and Mommy says they'll start getting me ready soon for my new button. I'll tell you more soon. I'm just talking to all the nice people in the waiting area while they wait too.

Wednesday, November 14, 2007

Mommy report: New record

During feeding therapy today, Braska decided to try a few new things, and show off a few others. She ended up taking almost 7 oz total (finishing 1 partial jar, downing a whole one, and starting a 3rd), which is a record, for sure. She showed off for Miss Louis with some raspberries, mouth full of food, of course, and with some very passionate short bursts of some apparently important information that we couldn't quite decipher.

Here's some visual evidence of the other recent mealtime fun.

A common theme during feeding therapy sessions has been Louise telling me that I have to let Braska make a mess, which I'm not good at doing. I tend to want to keep hands clean and all mess on the bib only. Today, I succeeded in letting her go at it. And we ended up covered in mush...both of us.

Tuesday, November 13, 2007

One-year picture day

Today I went to a place where they took a whole big bunch of pictures of me. Mommy kept asking me to smile and trying to get me to laugh, but there was just too much to look at. She said she was proud of me that I did good, though. Hope you like my pictures. I'm almost one!

Message from Mommy:
The lyrics from the song for the montage are below. This has been a favorite song of mine (by my fave guy SCC) but only tonight, after I'd already put it in, did I realize how really fitting it is. Funny how God does that...

I can see the tears filling your eyes
And I know where they're coming from
They're coming from a heart that's broken in two
By what you don't see
The person in the mirror
Doesnt look like the magazine
Oh but when I look at you its clear to me that

I can see the fingerprints of God
When I look at you
I can see the fingerprints of God
And I know its true
You're a masterpiece
That all creation quietly applauds
And you're covered with the fingerprints of God

Never has there been and never again
Will there be another you
Fashioned by God's hand and perfectly planned
To be just who you are
And what he's been creating
Since the first beat of your heart
Is a living breathing priceless work of art and

Just look at you
You're a wonder in the making
Oh and God's not through no
In fact he's just getting started and

Monday, November 12, 2007

Couch time

Tonight I got to play with my Pop a little.
He was letting me roll around on the couch, and Mommy doesn't let me do that because she says I'll fall off. Pop told her we should just see if I could do it. Silly Pop...of course I can do it!

I didn't fall though, don't worry. They caught me. Once Mommy had to catch me quick, but it was ok. That was the end of that game though. Mommy said that was all.
I tried to roll back to the other side, but I kinda got stuck a little.

It was fun, but when it was all over, I just thought I'd rest a bit.

Saturday, November 10, 2007

Saturday trip

Today we went on a trip to see some of our friends who moved out of our town a while ago, Miss Nico, Mr. Matt, Connor, and Lucas. It wasn't too long a trip in the car, and I napped most of the way.

When we got there, I sat by Lucas and we played a little.

Mommy wants me to be sure to tell you that she didn't leave me this close to the edge of the table except just for the picture. I'm not going to jump out or anything...

While the big kids played in the playroom, I sat in Lucas's bouncy seat. It had neat noises and some little fish on it.

Connor had lots of toys in his new house, and his cousin Audrey was visiting to play with him. When I get bigger, I can play with them too.

I played in Lucas's gym too, but Connor wanted to come play with me in there. We played the "I'll let go if you will" game.
I told Connor some secret stories, then he told me some too.

I took a nap all cuddled in the couch when I got tired of playing.

And when I got up, I played some more with a neat toy that had music and lights like my favorite!

It was a fun trip. Pop helped Mr. Matt and his dad build a great big swingset for Connor and Lucas. They worked all the long day. We will get to go back and play on it someday. That will be fun!

Friday, November 9, 2007

A little better

I'm not feeling so icky the last couple days, but I have had some stuff in my nose that makes me try to itch it alot. We have done some fun things, so I have a few pictures for you.

A few nights ago me and Mommy went to see Miss Sara and Ali. Ali wanted to play but I didn't feel like it so much.

I was a little grouchy, Mommy told me. She brought my toys and my blanket, but I just didn't want to play on the floor. Ali goes all over the place real fast. Mommy says I should take lessons from her.

I did find a fun thing that Miss Sara had. It's like one we have at home. Mommy pushes the buttons and the people on the TV change.

I have been playing with my chewy tubes that Miss Louise gave me. I like to shake them alot even though they don't make noise. Mommy says I'm supposed to put them in my mouth, but I don't think so. When I did try it once, it was kind of fun to chew on them, but mostly I like to shake them.

Tonight we watched some TV while Pop got his decks ready to go play with the guys. Mommy says I should give a Braska Bravo to anyone who can tell us who that is on the TV and what show it was. Any guesses?