Saturday, March 31, 2012

91/366 Position song


Dance class is fun. It makes a Saturday happier when we get to start out dancing. You should try it!

**Sent from the land of Android via Verizon and my Incredible.

Friday, March 30, 2012

90/366 Surprise present for swim

The doorbell rang today and KiKi went to open it.  Mommy got there right at the same time and told her she can’t just unlock and open the door without Mommy’s permission.  She told us both that we have to wait for an adult to open the door to make sure we’re safe.  Man… there is just ALWAYS something new to learn!

The mailman was at the door to give us a package that wouldn’t fit in the mailbox.  We didn’t know anything was coming, so we opened it right away.  This is what was in there….

It’s called a Puddle Jumper, and it’s like the one that Jack let me borrow.  I just love to swim with this, because I can do it all myself, moving around and playing without holding on to anything.  Since we need to give Jack’s back to him, our extra special secret shopper got it for me!  What a nice surprise!

All day I kept asking Mommy to take me to the Y to swim.  But we couldn’t go today.  I hope we go soon!  AND I’m ready for summer at Miss Cindy’s now!

Thanks, secret shopper!

Thursday, March 29, 2012

89/366 Mommy life: Sweet on sweet

Tonight as I came in after work to check on the girls, this was what I found…

I’m sorry—and I am not a mushy type of parent, just ask my friends—but come on.  That is all KINDS of adorable. 

Kinlee prefers to be holding a hand or cuddling an arm that’s lying across her as she goes to sleep.  If she happens to be in “the big bed” in our room, she must sleep right up against one of us.  And this drives me nuts.  Really.

So not only is it a surprise to see them asleep in Braska’s bed together, but it’s so sweet to see Kinlee cuddling up to her sister to get that physical connection she seems to need for falling asleep.

My bet is that this won’t last long, as Braska is a really really light sleeper, like her mother.  I’m thinking that KiKi will end up in her bed or the recliner before too long.  But while it lasts,  it’s just adorably sweet.

Wednesday, March 28, 2012

88/366 Lotsa swinging

Mommy had to work today before Daddy got home. So we went to Grandma C’s for a fun afternoon.  We went to the grocery store, and we had some lunch. Then we went to the park close to their house.  The swings there are really good, and since we like to swing for a very long time, Grandma C had to use lots of arm muscles today. 

Thanks, Grandma C, and I hope your arms are still working ok tomorrow.

Tuesday, March 27, 2012

87/366 New reading buddies

On Tuesday nights, we go Ella’s house.  We get to play with some friends and the adults stay upstairs and talk about God and Bible and stuff.  There’s snacks, and we get to watch movies or play outside.  I love it!  I always remind Mommy on Tuesday that it’s time to go to Ella’s house.

Tonight, after we the adults got done and we all came back upstairs, I sat down with Mr. Chris and Miss Abbey to do some reading.  I just to got to talk with them last week a little more, so now I can just ask to sit with them and they’ll read to me.  Isn’t that nice?  Mr. Chris plays music at our church and Miss Abbey is a doctor.  Since I LOVE music and I get to see lots of doctors, it just makes sense for me to have them as new friends!

Monday, March 26, 2012

86/366 Special family surprise day

Today was very very busy. We had a special surprise this morning. Can you guess where we went?  There’s a hint there…

Does this help some more??

Lots more pictures to come soon!  We had a GREAT visit!

Sunday, March 25, 2012

85/366 Good hiding place

When Mommy or Daddy comes home from being gone, we always hide so they can’t find us when they come in.  It’s just a funny game we like to play.  Sometimes we hide behind the couch or under cushions or in the laundry basket.  Lots of times we hide under blankets, too. 

Today, when Mommy got home from work, she found us like this…

We thought it was a really good hiding spot.  But it was a little bit crowded in there. 

It took her a while, but she did find us.

Saturday, March 24, 2012

84/366 Dancing barbecue

Today we went to dance class, then to Grandma C’s for a while. 

When we got home, Mommy was back from her meeting today, and we all went to Mr. Chris and Miss Kayla’s house.  They invited us to come over for barbecue.  I had the best place to sit while we were watching Mr. Chris do the cooking outside.


We also did a little dancing with Miss Kayla in the kitchen.  It’s always a good time in the kitchen when you get a little dancing going!

Friday, March 23, 2012

83/366 Family breakfast visit

This morning we went to breakfast with Mommy’s aunt and uncle. They were going through our town to see some more of their family.  I met them before, but I was pretty little, so it was fun to meet them again.  And KiKi was a tiny baby last time, but she wasn’t shy or anything.  Sometimes she can be shy when she meets new people.  It was a yummy breakfast. I had grits.  I like them a lot with butter and salt in there.  Mmmmmm.  (Daddy still thinks I’m silly that I like to eat them.)


Thanks for breakfast, and thanks for our cute ponies!!

Thursday, March 22, 2012

82/366 Laughing lunch, big Ben, tech tricks

On Thursday, I don’t have to go to school, so we get to just hang around home in the morning.  Then we got all dressed and went to meet Daddy, Grandma C, PaPaw John, and Miss Karen for lunch.  I ate some really yummy broccoli cheese soup and then had some fun giggle time with Grandma C and PaPaw.

We got goodbye kisses from Miss Karen, because she has to go back to Kansas on Saturday.  We always love to see her.  She has taken good care of us since we were born. (Little secret…We hope she can live closer to us again someday maybe.  Shhhhh….)

After lunch, we went over to Ben’s house to play a bit while our mommies had a visit.  He is way bigger than us, but it’s SO much fun to run around and play with him!

Tonight Mommy went to work, and I helped Daddy get some of his work done.  He fixes computers.  And this one is Papa’s computer that got broken by the lightning.  I showed Daddy how to take some of it apart.

Then you have to take these wires and plug them in over here.

Daddy learned quick, and then I let him finish so I could go play.

Another great day full of good stuff! 

Wednesday, March 21, 2012

81/366 Four friends, One great WDSD!

Today was SUCH a busy day! We did so much stuff for Happy Down Syndrome Day! (That’s what we called it when we saw people… we told lots of people!)

We got together at school early so we could take some pictures.

Sometimes us girls giggle about stuff, and Jack just ignores us.

There will be more soon… but Mommy was up most of the sleeping time last night getting ready for today, so we’re going to bed now.

Hope you had a great day!!!

Tuesday, March 20, 2012

80/366 Getting ready for tomorrow

We had school, friends come to play, fun at a friend’s house, and lots more stuff today.  But what’s the cutest thing we did today???  WE made this…

THAT is for me to wear tomorrow… Blue and Yellow, of course! 

It’s World Down Syndrome Day!  3.21.12   For 3 copies of the 21st chromosome… that’s what I have!  I’ll tell you all about it soon!

Monday, March 19, 2012

79/366 remembering the button

From September 10, 2007. The day the PEG procedure was done and the g-tube was placed.

From November 15, 2007.  The day the first button was placed.

Today was all about checking to see how the stoma was doing.  And really, we didn’t need to do it at all.  There has not been one single drop of leakage since the button came out last night.  Now THAT is a recovery process I can enjoy!

Sunday, March 18, 2012

Big News!!!! Button Free!!!

Mommy note:  Tonight as we were leaving the in-laws’ house at about 9:45pm, I heard an “Uh-oh” and turned around to see PaPaw holding Braska button.  It was not attached to her. 

We all kind of paused, I said flippantly, and half joking, “Well, I guess we’re going to be done with that now.”  I then quickly had anxiety start creeping in.  Over the next minute or so, quick conversations happened, and M agreed that we were probably ready to just let it stay out.  We were 45 minutes from home, had no supplies with us to reduce the balloon (which was still intact, weird as that always seems to me) and put the button back in, so we had to make some decision pronto.  Break the balloon in order to get it back in and hold the stoma open---but we don’t have a back-up button at home---OR just call it done and move on.

I called our nutritionist right then, not realizing until it was ringing that it was 9:45pm.  After a quick chat with her, and her assurances that she felt Braska was also ready to let the button go (we have discussed this recently, possibly planning to take it out in the next month or so), I agreed that this was our pivotal moment.

This is the moment we have been working toward for 5 1/2 years. 4 1/2 years with the g-button. 

So we put a makeshift bandage over the stoma, which was not leaking one drop, even though she had just had a late meal, and gave hugs and goodbyes.

As we were leaving in the van, I said a quick prayer that it would be all good. That she will continue to do as well as she’s done.  That the stoma would heal quickly and without complication.  And that I could adjust to this new strange life.

Because it seems like it is a new strange life, and it’s only 90 minutes old.  I suppose when everything has been about feeding, and getting off the tube “someday,” and being a mom of a tube-fed kid, it just feels really odd to have a sudden change in identity and shift of goals. 

But it’s a good strange. A positive odd-ness.  I’m excited…

Braska did stop to look at what was happening, she seemed slightly confused, but went right back to wrestling and playing immediately.  She’ll not miss it one bit, if my guess is right.

So celebrate with us, pray for her continue progress, and if you’re on this journey, know that it CAN happen…  I am realizing that I never really visualized that this day would come.  But it’s here. And I’m going to have to adjust to this new button-free “normal.”

78/366 Ball stuck in the tree

Today we were at Grandma C’s house.  There was a ball stuck in the tree, so we tried to get it out.  But we just got another ball stuck… So Daddy tried to climb up there.

It didn’t work.  There’s two balls still stuck up there.

Saturday, March 17, 2012

77/366 Watching the big storms

We had loud storms at our house today, and lots of thunder and lightning.  Daddy likes to watch the storms, and so we climbed up on the couch to look out there too.

It was a good spot to watch the rain.  And we didn’t even get wet!

Friday, March 16, 2012

76/366 Raahhrrrrrrr, I’m a dinosaur. And other talking bits.

Sometimes I like to pretend to be a dinosaur.  I’m a T-Rex, with little short arms.  See?


Mommy report: Speech/language

Braska doesn’t really want her speech therapist to know she can talk.  And that’s unfortunate.  She’ll show just enough to get by, but nothing like what she’ll do with other therapists or in more comfortable environments.  The SLP is very very sweet, so it’s not like she is difficult for Braska to deal with.  I’m not sure what B’s reasoning is.  But she just will not do much spontaneous talk around Miss C.  It boggles my mind, because Braska is a chatterbox, no doubt. She talks almost constantly at home.

But after talking with Miss C the other day, I decided to jot down the things Braska said for just a little snippet… then I emailed her the “findings.”

*When climbing up in her chair, "all safe and sound!"

*She picked up my phone sitting there in front of her and said, "Hey, that's MY phone!" when I tried to take it back. "I call Grammy," then putting the phone up to her ear pretending, "Hi Grammy, Ok, Bye."

*As I pour a drink, putting her hand out like she is stopping me "That's enough, that's enough!"

*She paused between accepting bites and started panting, "Like a dog, woof woof"

*Asked what Kinlee is eating, "Kinlee likes curly noodles"

*In the kitchen, as M walked in..."Dad, come on over."  He walked to her. "No, not this side." She pointed to his chair on the other side of her, "Go on that side."

*Randomly, "Hey, what the heck?" (We're not encouraging this one... )

*She started throwing her head back and roaring... I asked, "What are you doing?"  "I'm a dinosaur.". When seeing Daddy do an impression, "You're a T-Rex!". When daddy tickled her... "You got me." When daddy left room, she waved and said "Bye little T-Rex!"

*Again between bites, "Siblings are brothers and sisters."  This is from Sesame Street, watched earlier today.  Siblings was the Word of the Day

*After she finished her bowl of soup, "I ate the whole thing!"  Then she added, "Now we go to Ella's house!"

*She randomly said, "Hey, its a tuba."  I asked her, "What's that from?  She yelled, "Super Grover 2.0!" (Sesame Street again.)

All that was in the span of about 15 minutes, all at the table while she was eating and interacting with others. 

*Then later...On the potty, "Mom, I'm ready for wipe."

*Tonight, while I'm typing this, "Mom, can I sit with you?"  I told her she could.  She said, "Thanks, Mom. What are you doing? Working computer?" 

*And later, she bumped into me while she was climbing up next to me on the couch.  She said, "Oh, sorry Mom." And she gave me a kiss on my shoulder and said, "I love you, Mom, I love you."  Then she followed with, "I want some applesauce.  Mom, how 'bout some applesauce? Mom!  I want some applesauce, pleeeeeease!"

*As she was sitting next to me, she leaned back against the couch and didn't like that she had a hair clip in her hair that didn't feel good as she flopped back. "Mom, ouch. Get the clip. Get it out, please."  And then after I took it out, "Thanks, Mom, that's better."

*And one of my faves.... this morning, and many mornings, at the breakfast table, "Aw, Kinlee, you're so beautiful.". KiKi replies, "Thanks."  And Braska says, "You're welcome".

Thursday, March 15, 2012

75/366 Beans, lots of beans

We like to play with our bean box. We scoop and we pour them. We dump the cups out then we fill them up again.  We dig in there sometimes, too.  Beans can be pretty fun.

Wednesday, March 14, 2012

74/366 Library visit

We got to stop at a new library today and read some books. That sure makes for a fun afternoon.

**Sent from the land of Android via Verizon and my Incredible.

Tuesday, March 13, 2012

73/366 Tot Lot Tots

After school today, we got to go to the Tot Lot with Jack and Dashlyn.  We picked up some drinks and yummies and ate our lunch outside!  I like this nice weather!

I tried to climb on a big thing.  I didn’t get up very far, but I tried really hard!

KiKi tried to climb it, too, but she just decided to go run around on other things.

One of our other friends even showed up while we were there, too! It was a fun playground trip!

Monday, March 12, 2012

72/366 Walking in water

Kinlee played in the water that was coming out of the garage while Daddy was cleaning it out.  She even put on her rain boots.  kikioutside
It was a great day to play outside, she said.  I decided to stay in and read books and listen to music.  It was a great day for that, too.

Sunday, March 11, 2012

71/366 Bye to my cousins

After 3 days of seeing my cousins on their visit to Grandma C’s, we had to give hugs and say goodbye today.  They had to take a trip back home, and I have to go back to school tomorrow. 

Before everybody left, we took a few pictures.
Xander (3), Braska (5), Shaylin (6), Kinlee (3)

We had SO much fun playing together.  And even before we got away from Grandma C’s and PaPaw’s house, I was tuckered out and snoozing.

It was a super fun weekend for PaPaw’s birthday and lots of family playtime!

Saturday, March 10, 2012

70/366 When Mom is busy

Tonight we went to play with our cousins again and some other friends too.  While we were playing, Mommy and Daddy and lots of other adults were playing a game where they try to answer lots of questions.  When they came to get me after, my face was all red again, and it was all crusty with goo. I was too busy playing to ask for a tissue. Mommy made a face like ewwwww, and then she went and cleaned me right up. 

But Mommy and Daddy's team won, so yay!

**Sent from the land of Android via Verizon and my Incredible.

Friday, March 9, 2012

69/366 Girl cousins

Tonight my cousins came to town.  Cousins are way fun to play with! (There's a boy cousin too, but he didn't want to be in the picture. He just wanted to be with Grandma C.) We all got to play for just a little bit at Grandma C's house. We wanted to stay more, but its really late. We will get to see them tomorrow, so yay!

**Sent from the land of Android via Verizon and my Incredible.

Thursday, March 8, 2012

68/366 Poor little nose

I’m feeling a little better… but my little nose is hurting so much from all the icky snots coming out of it.  And my mouth hurts from these pesky big teeth trying to get in my mouth.  I’m ready to feel better.  We did find a way to help my nose get better a little… Desitin Creamy. Amazing what it can do for a super ouchy nose.

Wednesday, March 7, 2012

67/366 PaPaw’s Birthday

We went to take PaPaw to lunch for his birthday today.  grandskids1

When we got back to the office at the church, before we left again, I got to play in Grandma C’s chair.  We went around and around, and it’s WAY fun!

We went to Grandma C’s and PaPaw’s house for some playtime.  We worked on a puzzle with my name in it.  KiKi is really good at knowing where all the pieces go. 
(Mommy note: Kinlee was doing the states puzzle recently and saw that the Illinois piece had a picture of an ear of corn on it.  She said she didn’t know why there was corn on there, there should be a Chicago Bear on there! )

KiKi asked PaPaw how many he was today, and he didn’t say anything. So Mommy said “40.”  And then she said “plus 20.”  And since I don’t do that much math yet, I just left it at that.

Before we left, we had a family group cuddle.  We love group cuddles.  Especially when we get to be right in the middle!

Happy Birthday, PaPaw!  Glad we got to spend today with you!

Tuesday, March 6, 2012

66/366 Reading and Driving. Separately.

I’m really tired and going to bed, but I’ll share a couple of quick pictures.

(Mommy note: I have not had a full night’s uninterrupted sleep in months.  One of the girls—usually Kinlee—has been waking up each night. Sometimes it’s been both girls. Last night it was both girls, but Braska ended up having me up from 11:30pm to 5:30 am, then up again at 6:30 am for the day.  Congestion is the culprit. And she just won’t breathe through her mouth! We are praying for a surprisingly peaceful evening!)

After baths today, and before we took our rest time, KiKi read me a book.

Tonight we took one car to pick up the other car from the car shop. So while Mommy and Daddy switched our seats around, me and KiKi decided we would pretend we were going on a trip.  She was the driver, I was the silly one.

Monday, March 5, 2012

65/366 A day in our p-jammies

I didn't go to school today since I haven't been feeling good. So KiKi and I just played and flopped around in our p-jammies. We watched some Sesame Street this morning, too.

Mommy looked in my mouth today and found that I have big lump spots in the back behind my big teeth. She says I'm working on getting new teeth and that might be why I'm not feeling good, and it might be why I'm wanting to chew on my fingers and stuff. She got a good tip on that from a friend.

No school tomorrow either, so I hope I feel better soon!

**Sent from the land of Android via Verizon and my Incredible.

Sunday, March 4, 2012

64/366 Highs and lows

Mommy had a meeting at work this morning, and while she was gone I started feeling bad again.  I got really REALLY hot (104.8) and cried a lot on Daddy.  I slept for a few hours after Mommy gave me some medicine when she got home.

I felt a little better when I woke up, so I played with my blocks for a while.

KiKi plays with me, and when we need to move the blocks, which are kind of heavy, we do it together.  That’s called cooperation, and we’re practicing it so we get good at it.

It’s bedtime now, and my fever is gone. I’m down to my normal again. (96.5-97)  I’m going to bed because I am tired, and I need good sleep tonight.  I can’t go to school tomorrow since I was so hot today, so we’ll stay home and rest.

(Mommy note: Braska has taken to moaning the last few weeks on and off but more frequently as time goes, not just when she’s not feeling well—that I know of—but it’s been much more this afternoon.  I can’t identify the problem, but it seems she’s needing something.  Similar to her teeth grinding, which fluctuates as well, we can’t figure out what need is going unmet… since sensory issues are my guess.  We can’t just hand her pretzels to chew on because she doesn’t chew crunchy things yet…  if you have thoughts, do share…  We always appreciate other parents with experience.)

Saturday, March 3, 2012

63/366 Jacket for two. Fever for one.

Today, Daddy took us to dance class.
We have cards that we give to Miss SJ each week and at the end we get a sticker.

Sometimes we sit in a circle and make ourselves really small and then we count to 3 and say “SURPRISE!!!” with our hands and feet out real fast.

Then we went to Grandma C’s house.  We played, but mostly I slept.  I was not feeling very good. 

KiKi watched the movie with Daddy and Grandma C.
(Can anyone name that movie?  Be specific!)

When Mommy got home from work, I got some medicine and was feeling a little better. So we all played for a little while.

KiKi got in Daddy’s jacket with him.  It looked pretty funny!

I played with my blocks.  They have my name on all of them.  But I like the side with the letters on them.

I took lots of naps today, but I am ready for bed again.  Mommy gave me some more medicine, so I hope I can feel better tomorrow.