Dress up party

Today we went to PaPaw’s church for a dress up party.  There were lots of people there all dressed up in funny clothes.  Me and KiKi wore our bug dresses, and everyone thought we were super cute!

KiKi doesn’t like people who are dressed up a whole bunch, like where you can’t see their faces or when it looks like somebody on TV or something. So she stayed close with Mommy most of the time.


I walked around by myself for a while because I’m not scared of the dressed up people.


There was a great big bouncy house for the kids, and I wanted to get in.  I don’t really jump much but I like to sit and let the other kids bounce me.


And I said Hi to Daddy through the strings.


And I slid down the big tall slide REALLY fast and fell over at the end.


I wanted to go do more, but there was a bunch of big kids in there and I was too small to play with them.  They were bouncing a lot bigger than I could do.

So I went and found a little seat to rest in.  It was close by Miss Cheryl and PaPaw’s cars, so I just rested with the beads a nice lady gave to me.


But KiKi had to come over too.  She likes to do whatever I do.


She wanted to go in the bouncy house, but she wouldn’t have liked everyone yelling and running over her.  So she just watched outside.


Soon it was time to go back to our church, and we were tired of the sun in our eyes.


KiKi even took her hat off.  And if you don’t do the dress up, you can’t stay at the dress up party.  So we said bye bye to everyone and we left.

Tomorrow night we get to do ANOTHER dress up party!  I can’t wait!

Having twins! [Down syndrome post]

Did you do a double take at the title?  Did you jump right into the post to get the “big news”?  It’s funny what a couple words and an exclamation point can do to some people.

We’re not having twins. Or babies of any kind.  Just to be clear.

I get asked a lot about how the girls are doing in terms of development and size, relative to each other.  Only a few times have I been asked when we are out if they are twins.  I think the difference in hair length is the big giveaway for most, at least that’s been the “tip-off” for a couple people who mentioned it.  But we do get a lot of comments about how similarly sized they are.

There have been many times in the last few months when I’ve thought that this must be a little peek into what it’s like to have twins.  At least for this little period we’re in right now.  Developmentally, they are so close in age in many ways.  Not all.  Braska still has Kinlee beat with speech and language, that’s for sure.  But Kinlee is picking up words and signs faster than I can keep up.  But with gross motor, Kinlee has passed Braska by.  Kinlee can climb more efficiently, walk steadier and more quickly, she is far more balanced and solid on her feet, and she has a great deal more stamina than Braska.  With fine motor, it’s the same story.  Kinlee can manage small things, open lids, sign some things more correctly, and she can push any button she wants with great accuracy.  These are things that Braska struggles with.  Though Braska knows far more signs, she doesn’t necessarily do all the intricate finger work correctly because her little cute, stubby fingers don’t cooperate with her.

Clearly, they are very different little girls.  But for this short period, one that will probably be fading away by mid-summer, they are interested in much the same things, entertained by some of the same things, and they function very similarly in the home setting. Soon Kinlee will be enjoying her role as the leader, which she is practicing currently when she gets the chance, and Braska will be following and learning from her.  And that’s ok.  That’s not bad, in my opinion. It’s just what is.

I’m not selling Braska short, and I’m not saying Kinlee won’t learn from her later on.  I think Kinlee will always learn from Braska, and there are definitely areas where Braska will maintain her “lead” for quite some time.  But the reality of developmental delays is that at some point, the younger child will surpass the older child in some physical and cognitive realms.  We’re ok with that, because we believe Braska is exactly who she is supposed to be.  She doesn’t just “happen to have” Down syndrome, and she definitely doesn’t “suffer” from it.  She was created just as she is, and though there are some times I wish I could help her in ways that I cannot, I wouldn’t change anything about her most core qualities and design.

Comparisons can be dangerous, I know. But I am comfortable that we are enjoying this time that they are so nearly matched and we’ll celebrate them both as they grow and progress through the next stages.  We cheer Braska when she takes a bite with proper mouth and tongue position and when she closes her mouth around her straw, even if she doesn’t drink, because this is huge!  And we cheer Kinlee when she eats her whole meal by herself—veggies, meat, pasta, fruit, and all, washed down with a big cup of milk.  Different celebrations, but the same excitement for each.  We’re impressed with them both for all they do, and just because they look so similar in size right now doesn’t mean that we don’t recognize their individual needs.

It’s fun that they can share clothes. It’s fun that they both love to wear bows in their hair.  It’s fun that they both like to hold hands and walk to the car after church.  They will change, we will change, and all the elements around us will evolve as we go through life.  But for now,  it’s kind of fun having this little tiny glimpse of what it might be like to have twins.

Windy Weekend: Part 1

Remember when I told you about my long ride and showed you the silliness me and KiKi were having on the bed??  (If you forgot, you can go here.)

Well, we had a really fun weekend with lots of nice people and some new friends.  We went to Aunt Karol and Uncle Jim’s house a bunch, and it was fun every time!! They have lots of kids to play with and some great toys.  I’ve got a LOT of pictures to show you, but I’ll do it a little at a time so you don’t get too tired.

We got there on Thursday and Mommy had to get our things out of the car. Here’s what me and KiKi did when Mommy wasn’t looking.


Then we went to watch Jade run.  She is SO fast!  Uncle Jim and Aunt Karol took us right down by where she was running so I could see really good.  We said, “Go Jade!!!”  (Well, I was thinking it, but there were alot of people around that I didn’t know, so I didn’t say it loud.)  It was REALLY windy the whole time, so Jade had to work super hard to run fast.


We got to meet lots of nice people.  Most of them were brothers or sisters or cousins of somebody.  That is a really big family up there!


When the sun was going away, it got a little chilly, so I put on my warmer shirt that they gave me. This is when the wind was blowing so hard that I almost fell over.  I said, “Whoa!!”


I did lots of walking, too. I’m getting pretty good!


Me and KiKi held on to the fence and watched everyone walking around and all the kids running.    

Can you see what my shirt says???

It’s special for Laynee because she was always the best cheering girl and the prettiest girl at the running games.

We slept alot that night because we were so tired.  That always makes Mommy happy when we sleep good and don’t get her up in the night.  It was a good day!!

Come back to see more pictures and stories tomorrow, because the next day had more fun. (and a little scary parts too I think!)

Playing in the sun

Yesterday we went outside in the front yard to play a little bit.  It was really nice and sunny, and we didn’t have to wear our coats or anything.  Mommy put some sunglasses on me that she got me when I was a tiny baby.   Since I have glasses for all the time, I have never tried them, but today we did, and I thought they were pretty cool!  They’re called Frubi Shades!  Funny name!


Mommy took some toys outside for us to play with.  I don’t like grass, so we had things that we could play with on the hard part.  I haven’t used my walking toy much lately since I can do walking without it most of the time, but I thought it was fun to play with it outside.  Mommy wouldn’t let me go for a walk by myself though…I kept trying to go where the cars go, so she made me turn around.

KiKi didn’t feel very good still, so she wasn’t wanting to play much.  And she doesn’t like the sun.  Oh, and she REALLY doesn’t like me to wear sunglasses.  She got very upset til I took them off.


But she finally found a flower that she thought was pretty, so she played with it a little while. 

I pushed her on my little bike with three wheels but we didn’t take a picture because Mommy was trying to keep us from tipping over.

We had a pretty good time, but we didn’t stay out too long.  It was pretty warm in that sun, so we went in and played the rest of the day.  But it felt nice to be outside a little!

Christmas dress-up, part 1

I’ve got so many cute things to wear for Christmas, so we’ve been trying to take pictures to make sure we remember them all.  (Some of these are ‘specially for Miss Karol, but we’ll let all of you see, too.)

Mommy keeps trying to take pictures of me and KiKi together, but we don’t ever look at the camera at the same time.  That makes Mommy growl sometimes. But look how cute we are!


This is a cute sweater that somebody gave me, and there’s little Christmas things on my shirt underneath the sweater too. 

[Oh, and the blue things on my legs are my ther-uh-togs (Theratogs).  Miss J at school helps me learn to walk and get stronger, and she’s letting me use these.  They help me ALOT!  I’m walking better with my walking toy all the time, and sometimes I try to do a step or two myself.  It’s hard work though!!]

This was a present from Miss Karol… isn’t it so cute!  That’s what I always say when Mommy gets my clothes out…”Cute!”
 

Braska: 31 for 21: Silly girl walking

I’m working hard on my walking with only holding one hand of Mommy’s and taking steps by myself sometimes too!  Here’s a movie we made at Grandma C’s and PaPaw’s on Sunday.   I was showing off a little, but everybody kept cheering for me!

Mommy report: Update, part 2-gross motor

Again, to review, Braska is 34 months old, she rolled over at 8 months, she sat independently at 13 months, and she crawled consistently at about 25 months. Over the last year she’s slowly conquered pulling to a stand, cruising, and taking steps with two hands help.

Braska has PT every week.  She loves her Miss “An-juh-wa” very much, and she performs better for her than almost any of her other therapists.  She has really taken off over the past few months since we’ve been having some sessions in the motor therapy room at Braska’s school.  She LOVES that room and is totally energized when she’s in there. They swing (a favorite always) and climb and do little obstacle courses while crawling.  She especially loves the space maze, which she has finally been able to master—all three levels—all by herself.  I often say that if we ever were to win millions, one of the first things I’d do would be to build one of those rooms on our house and fill it with all that cool therapy stuff.

She slowly worked her way through pulling to a stand with help, doing it on a flat surface (like a wall, nothing to grip) and cruising down the couch and then a flat surface, like down the hallway.  In the last month or so, she has started to try to stand up on her own, and she can sometimes do it for a second or two, but usually only once, then her little legs don’t cooperate after that.  She likes to be upright, though, and she spends alot of her days standing at the toy chest, the couch, Kinlee’s ExerSaucer, or at the front door looking out.

A couple weeks ago, her PT told me that Braska’s teacher at her pre-preschool said she had taken a step at school.  I was surprised.  We tried to set her up for repeating it at home, but she just lunges once she’s standing, not moving her feet. 

Then last Friday she took a step going from a chair to the couch, and again I was surprise.  Sunday we went to M’s family’s house for football watching, and Braska blew us all away by standing up from her little wooden chair in the middle of the room and taking 2 steps to the coffee table.  This was the first time she had done that unprompted.  Everyone got all excited and then she did it a few more times between people on the floor with her.  We debated if we get to count that as her “first steps,” knowing that it will be a long time still til she is officially walking, but I think we’re going to give it to her.

Her biggest issues are that she is just plain one of the lowest tone kids that some of our therapists have seen.  We have had this comment shared with us on several occasions.  She just has to work SO hard to move herself at all.  It doesn’t help, I’m sure, that she’s so darn small and light. She doesn’t have much muscle mass at all.  She struggles a great deal with her core strength especially, and even with her SureSteps, she has a hard time keeping aligned right and balancing on her own.

One thing she has down pat is crawling…finally.  She is a speed crawler at this point!  Don’t turn your back because she will be gone!!  She has also mastered climbing the stairs by herself, and pretty quickly, and she is just now getting the hang of going down the stairs the proper way.  We don’t let her do it unsupervised yet, but she’s making great progress there.  She loves to climb up on the couch or into the recliner.  Any climbing she can do is fun for her.

Overall, she’s working hard and gaining strength, but it is just a VERY slow process with her.  I’m guessing at this point that Kinlee will walk before Braska does, which will be weird, but it’s fine.  In the end, it doesn’t really matter.  And I can catch them easier if they’re crawling anyway!!

Stay tuned. Update, part 3—speech will be next.