Wednesday, August 31, 2011

Music with myself

Today while KiKi was napping, I got the iPod to myself. Mommy put on my therapy music, clipped it on my shorts, and said I could go look in the mirror. What? I can walk around with my music? That’s GREAT!!

Mommy thought I was pretty funny. I did all kinds of silly things, like tapping on my nose in the mirror and talking with my chin on there. It felt funny and made me giggle. Mommy said it was good clean sensory fun.

I listened to lots of music for a long time. I went and asked Mommy to put on some more songs over and over. Someday I’ll figure out how to work that thing myself.

(If you wanna know how I'm doing with my drinking (no tube still!), Mommy's gonna write about it on her page.)

Tuesday, August 30, 2011

Tiny Dancers

Me and KiKi like to dance.  We like to dance a lot. We can dance in our regular clothes.  Like these… this was what we wore today when I went to school.  (We were playing “FREEZE!” for Mommy to take pictures. She used her phone, so they aren’t very clear.)

But since Grandma C has fixed it up so we can take a dance class in a few weeks, we got some clothes that will fit better for learning how to dance like big girls.

We got our pink things, kinda like swimsuits, and then we got these cute purple fluffy skirts.  They’re called tutus.  Duck has one on Word World when he wants to look TOTALLY terrific, so we figure we must look pretty good, too!

I just have to find my white skinny pants like KiKi’s, and we’ll be ready!  Dance class is doing to be so fun!


(Mommy note: I had decided that we wouldn’t be buying “dance clothes” since we don’t really know how the girls will do and if this will be something that works out for them.  But I thought I’d look and see how much things cost…. and they cost too much, in my opinion, and everything was too big for my tiny dancers.  But after a tip from a fellow shopper at WalMart, we stopped by Target to see what they had.  Their selection was nice, but again, far more than I’m going to spend. 

But as I turned around from the dance attire rack, the chaotic piles of clearance were right there… and peeking out from within that pile were two—only two—pink leotards, size L/XL.  The size made me laugh, but they looked about right.  I held one up to KiKi and it looked about right.  And the cost….  $1.74.  Yeah, that’s more like it.  The little purple tutus were also $1.74 each, so I splurged, and for less than $7, the girls have cute little “costumes,” as they call them, for dance class. Though I think we’ll skip the tutus for class, as Braska would be constantly distracted by the texture.  It starts Sept10, so we’ll see…I’m excited.)

Monday, August 29, 2011

Someone’s been sleeping in MY bed

(Miss Karen K, look at how she has BOTH of our blankets. Lots of K family love.)

Morning music

This is a good way to start a day. While Mommy’s getting breakfast ready, we listen to our “morning music.”  We like to hear songs that we know and we can sing with.  And we each get to have the music in our ears at the same time.  We like to use our iPod.  (Mommy says it was given to her, but we kind of sneaked it away to be ours.)


Mommy likes that when we sit like this with music in our ears, we don’t move at all except to sing along a little and flip pages in our books.  She says it’s nice quiet time for her.  And we don’t mind since we get to keep our fun music all to ourselves!  Mommy also likes that I don’t grind my teeth as much when I have music in my ears… and sometime she says she really needs a break from that.


KiKi and I can sing along with each other, and we can still hear Mommy when she talks to us.  It’s a good deal for all of us!

(Sometimes they listen to Peach Jamz, which is modulated for Therapeutic Listening, but we admit we don’t have the official headphones for it. We have borrowed them, but the ones we had were too big for Braska.  But she really loves the music, even though it sounds very weird to me.  KiKi seems to think it’s ok, too.)

Now it’s time to get ready for school, so the music will have to wait til later!

Saturday, August 27, 2011

Because we are dirty

Tonight we wanted to take a bath.  KiKi kept asking to take a bath, and Mommy asked her why she wanted to take a bath so badly. 

She said, “I’m really dirty, Mom.  I need a bath because I’m dirty.”

Then I said, “Yeah. I’m dirty, too. We wanna take a bath pleeeeeeze!”

Mommy said she didn’t know if we were really all that dirty, but it was ok if we wanted to get in the bathtub for some splashing fun. 

So we took a bath. We even got to turn on the water bubbles that splash around.

Mommy said we didn’t seem all THAT dirty, but baths are good even if there’s only a little dirt.

And then it was bedtime…  OH, and guess what?!?  I drank all my milk again today!  That’s 4 days with no milk in my belly tube!! I’m getting better at drinking good, too.  YAY!

Friday, August 26, 2011

Mommy report: Day 3 and counting. More eye surgery.

Yes, I’m ready to say I’m counting now.  Days tube-free. THREE.

Actually, close to 4…her last tube feed was Tuesday breakfast. But let’s not get too picky. I’ll just count full days.  Pardon my excitement.

She did great again today.  Though she did fight a little this morning in both eating and drinking.  Just was in a grouchy mood for a while.  But we managed. We took breaks and she got it all in. Daddy even covered a big part of that tonight… so it’s now a team effort, and that’s good.  Her total today was about 21 oz today, I think.  Possibly a bit more.  Go Braska!

Also today we had her 3-month check up from her May strabismus surgery.  Her results have been great, and we are all pleased.  In that time, though, her tip/tilt has become more consistent and defined.  This was kind of expected, in that when we fixed the crossing issue, the true nature of her nystagmus issues and the related accommodations showed up.  This is why we did NOT combine the eye procedures.

So we’re now in the process of planning for the modified Kestenbaum procedure.  It’ll be a little longer before it happens, though.  We are going to try to coordinate with her dentist, so that while under sedation they can also do a thorough cleaning and x-rays.  Dental visits are TORTURE for her and me.  Really bad.  Working out scheduling for the eye center and the dental team can be tricky.  Please pray with us that it’ll be able to be done relatively soon and combined as we hope.

What a crazy week. If someone had told me Monday morning that Braska would be drinking her whole fluid intake by Friday, I’d have laughed.  But she did, beginning Tuesday afternoon.  She proves us wrong once again!

Driving to the doctor

Well Mommy drove on the way here, but me and KiKi are pretend driving to the "check-up" in the play area.

I hope the eye doctor likes my new better eyes!

Thursday, August 25, 2011

Mommy report: Two days. Tube free.

Short and sweet.

Braska has had no tube feedings since Tuesday morning.  None on Wednesday, and none on Thursday.  She had 20 ounces of fluid yesterday, and about 23 today.  All oral.  Hard to believe, even though I’m right here for all of it.

It’s a struggle, but she’s showing improvement each day.  She hasn’t asked for “milk in my belly” at all, a favorite request of hers. 

I’m exhausted, but it’s ok.  Though the effort required of me at each feeding/drinking encounter multiplied greatly versus the super simplicity of the g-button, she’s the one doing all the work.  It is really hard for her, but she is managing like a champ.

Practice practice practice. Drink drink drink. That’s what’s on our schedule.

Oh, and tomorrow morning is our follow-up appointment from the May eye surgery. Expecting to plan for the date of the next one.

BLTN: Busy ears and busy hands

Sometimes special people give me special things…

I love letters.  All kinds of letters. Words, too.  But I don’t like doing things with my hands that are hard.  So when I got this nice present of big letter blocks that have a string that you put thru them, I decided to try it, even though I don’t  usually like to do those kinds of things.

And it’s even better when I have my iPod and my special therapy music in my ears.  Both of those were from special people, too.

Wednesday, August 24, 2011

Mommy report: 20 ounces. No tube. Nuff said.

What Braska looked like (pretty close anyway) the last time she had a fully tube-free day…..  April 2007.  (And those tube-free days were hurting her, dehydrating her, though we didn’t know it at the time… but no more!)

Clearly, that particular day wasn’t tube free.  Man, I do NOT miss that NG.  We don’t mind the g-button at all, but that NG tube was a pain!  In the picture above, she weighed 10 lbs 8 oz at 4 months old.  She was weighed again today by her nutritionist… and we met a new goal

Anyway, I’m beat from a long day, but I couldn’t miss documenting today’s victory. 

After our big celebration yesterday of record-demolishing totals of oral intake, I had hopes that we would get to the point that ALL her fluids in the day could be covered orally… but I didn’t think it would be now.

Today she took in over 20 ounces of liquid, (mostly milk, some juice) via sippy cup or open cup.  She also handled her calories,“entrees” as I call them… semi-blended soups, etc…and her much beloved yogurt.  One very successful day!

No tube feeds today!! None were needed!!

I acknowledge that there may be days that don’t go so smoothly, we may not be ready to count the sequential tube-free days yet.  But the progress is clear, and for that, I’m SO thankful!

Thank you ALL for your encouragement!!  I do so appreciate having so many wonderful people on this journey with us!

Tuesday, August 23, 2011

Mommy report: BIG news for a little girl

Kids eat. Kids drink. That’s what kids do. It’s built in. They just know how.

But mine doesn’t. Well, one of them does, but the other one, the older one, the way-tiny-for-her-age one doesn’t. (We will find out tomorrow if we’ve made our summer goal of 25 lbs! It’s going to be close…)

She’s been in feeding therapy for over 4 years. She’s made progress. Lots of it. But it’s VERY slow going. But this isn’t about that. (If you want more details about our feeding journey, please feel free to ask. I’m happy to address particular questions.)

We’ve been working on Braska’s oral liquid intake more diligently since the spring. The team initiated offering frequent drinks during her school day, between each activity, trying to increase her oral intake. She is up to about 3.5 to 4 oz a day (9am - Noon each morning). That’s a very VERY big improvement from a year ago! She only takes sips, like a mouthful at a time, (from a sippy cup with no valve) then she has to let go of the cup and swallow. This is done with assistance to hold the cup. Although she CAN hold it and take a drink, she is not at all motivated to do so on a regular basis. She will occasionally ask for a drink, take a couple of sips, and then be done. So we are still using her g-button for her fluids.

Yesterday, we had a bit of a discovery. I learned that Braska was keeping a little trick just for Miss A in class at school. She was taking continuous drinks. Like without letting go of the sippy cup, swallowing and then taking in more. This is HUGE! There is no way to describe what a big deal this was for me to hear.

So we tried it a little in feeding therapy yesterday, and I did it again last night a couple times. The trick, we were told, is to sing ABCs or some such song while holding the cup up for her. This is no surprise since singing is often a hit and a motivator for her. Last night she took about 5.5 oz orally, and I was thrilled!! It is A LOT of work for her to do, and it’s still a slow process, but she’s doing it!

Today, she took about 3 oz at school again, then when we got home, I offered her milk via cup several times. She was willing to tolerate me holding it up for her to try to swallow. No doubt, some does leak out when she struggles with it, but she is taking in far more than she’s losing. This afternoon, she took 6 oz from her cup in a matter of just about 10 minutes! I was SO excited!!!

BUT… that wasn’t all…

Tonight, she came and asked for milk. I took her in and set her on the counter in the kitchen, and we did several drinks. She didn’t lose hardly any, and I found a good rhythm of how long to push her and when to give her a break. She took ANOTHER 6 OUNCES!!! So from noon to about 9pm, she had 12 ounces orally!!!!!

I hesitate lately to even write about these things, because we have found that even people who have “feeding issues” under their belt are light years ahead of us in the journey. We’ve yet to meet anyone who has a situation quite like ours, with the limited fluid intake ability combined with the general non-interest in food (though that’s improving here too) AND the inability to chew at all at her age of almost 5. Zero. Zilch. We cheer lately when she closes her teeth on something, and it is good. But we’re a long way from handing her a french fry and watching her eat it.

So it’s ok if you can’t imagine what this means or truly empathize. You can still celebrate with us as we dance around in the kitchen and hoop and holler about the strides this girl is making.

This is HUGE!!

Monday, August 22, 2011

BLTN: Wedding days 2

The big day was Saturday. Everyone was dressed up all pretty!

Auntie Cheryl and all her cousins and friends…

Grandma C and me…

Daddy and his brothers…Uncle Levi and Uncle Ethon

All four of us in my family…

KiKi and Xander did a great job!  They walked really good, and everyone thought they were so cute!



It was a really fun day!  After the wedding, me and KiKi went to Auntie Rachel’s house to play with Grammy while Mommy and Daddy went to the rest of the party stuff.  We had fun too.

Sunday, August 21, 2011

First day of preschool 3rd year chatter

Here's a movie of what Mommy calls my silly chatterbox talking. I was excited on my way home from school on Wednesday, so she just recorded a bunch of my silliness... See if you can tell what I'm talking about! If you can't understand something, just ask and I'll tell you what I said.

Friday, August 19, 2011

BLTN: Wedding days 1

Uncle Ethon got married to Miss Cheryl.  Now she’s Auntie Cheryl! KiKi was a flower girl and so she had to go to the practice to make sure she knew how to walk at the right time!

Everyone had to practice… Auntie Cheryl, Uncle Ethon, and PaPaw since he was doing most of the talking.


I just watched what everyone was doing.… and Shay and Auntie Janice did too.

First, KiKi did a practice by herself, before everyone got there.

Then KiKi practiced with Xander since he was gonna walk with her. 

She got tired of standing up there though and so she sat down.

After practice, we went to Miss Cindy’s for a super  yummy dinner and lots of visiting with people in our family that I didn’t know very good.  But they were all pretty nice.

Tomorrow is the big wedding day!

Wednesday, August 17, 2011

BLTN: Too cool for first day of school

I love school, and I was really excited to go again this year. (I talked all about it here. )

But when we got home that day, and Mommy wanted to do pictures, I was too busy reading my book.    So this is all she got.  I’ve got things to do, ya know… can’t always be just posing for pictures.

Monday, August 15, 2011

Me n’Jack: Long time, no play!

Today Jack and Dashlyn came over to play for a while.  Miss Julie had a meeting so they came to our house. 

I was glad to see Jack again.  It’s been a long time since we’ve been able to play together, and I missed him!

We played for a while in the playroom and had lots of fun, and we also went to the living room and watched Bob the Builder.   Jack called all his family on the phone while he was watching, and Dasha read one of my books.

Mommy put us all on the couch for a picture, and we *almost* all looked at the camera.

It was so much fun to play that tomorrow WE are going to THEIR house while Mommy gets her hair fixed.  We have a big fancy weekend coming, so all of us have to get ready to be extra pretty. Uncle Ethon is getting married!!! I hope Mommy gets my dress all finished!

Tonight we went to meet my teacher and all my friends for this year of school.  I am happy that I got my same teacher from last year, and I got Miss J and Miss L to help me learn special things again!  It’s going to be fun to have lots of the same people helping me.  All my friends in class will be brand new, and they are SO BIG!  They are 4 like me, but wow…so much bigger!  Mommy said she didn’t know 4 looked so big on other kids.  School starts Wednesday, and I think it’ll be fun!