Stringing letters [Down syndrome, fine motor skills, OT]

My teachers at school are just the best. I like all of them so much. And it’s so much fun to see what new things we’re going to do everyday.

Miss J had a fun new thing for me to try a few weeks ago.  They are LETTERS! My favorite thing in the world!  Miss J helps me learn how to use my hands better and make them stronger, which is really hard for me.  But these fun new letters are so great I don’t even mind doing them for practice.

Then the coolest thing happened…. I got home and there were MORE letter beads, just like my ones at school!  It was like magic! Somebody special loves me a whole lot, I think!


KiKi plays with them too, but they are my special toy to practice with.  The first day we had them at home, Mommy let me play with them some after KiKi went to nap.    Here’s a little movie for you to see…  check out my skills!

Make an on-line slideshow at www.OneTrueMedia.com

Mommy note:   Neat things to note in this clip…
~~Fine motor is a VERY difficult thing for Braska.  She has only been in regular fine motor focused therapy for about a year, because prior to that most of her OT time was focused on feeding.  It is one of the areas that she shows the most delay. But we’re not bothered by that.  She’s doing great! She now has two OTs at school (the best two, in my opinion!), one for feeding and one for fine motor. (They are a GREAT team and overlap a lot in each area.)
~~ Suddenly every letter was her “fav’rit”. As in, “Oh, the letter U, my fav’rit!”
~~Most of the letters you will hear her say “makes the ___ sound.”  This is something we’re working on, mostly because Kinlee is obsessed with what everything starts with and what sound all the letters make.
~~You’ll notice phrases “I better go get it” and “I do it again” and others.

Mommy life: A peek at the future

Maybe it’s because music is part of my core nature, maybe it’s because I have a daughter with Down syndrome, or maybe it’s because it’s just an inspiring story.  No matter why it caught my attention, I’m glad it did.  (Thanks Ria for posting!)

It’s really short…take a look.  I just LOVE seeing girls about this age who are just living life. Who knows where Braska will be and what she’ll want to do, but it’s fun to think about her in an opportunity like this.

(video embedded below)

I couldn’t quit focusing on her speech and articulation… so good.

Now if only we could commute to that class once a week…

A good day to be 4

I had a great day. It was really busy and there’s lots of pictures to show you, but I’m gonna go to bed and get some rest!

Happy birthday to me!

31 for 21: Well DUH mom!

Last night we were cleaning up the living room, and the panda pillow pet-type thing that lives in the corner was returning to his home.  Braska came over to me as I was reattaching his little strap to make the panda appear versus just the pillow. 

She said, “Panda bear.” 
I said, “That’s right.”

Then I waited a second and remembered something we’re supposed to be working on.

I asked, “Braska, is this a panda bear?”
She said, “Yes.”
I asked, “Is this a horse?”
She replied, “No.”
I asked again, “Is this a panda?”
And she said, “Yes. Panda bear.”

Simple as it may seem, this is a big deal.  We’ve been working hard on yes/no preferences for a long time.

You see, usually, if you ask Braska what she wants, she’ll answer with whatever was the last option in the list.  And if you ask a yes/no question, it will always be “Yes” or “Yeah.”   You can ask her if she wants pizza for dinner, and she’ll say, “Yeah!”  But try to offer her pizza and you’re out of luck.  She’ll push it away and say, “Nothankyou!” 

So her marvelous SLP has Miss L has been working on this with her, and I’ve been trying to encourage more opportunities like this, and here we see results! Woo!

For anyone who is working on this particularly, here’s the instructions I was given.  (Note: Braska’s big motivators are letters and numbers.)

I’m to show Braska a letter and ask her what it is.  She will tell me correctly.  Then I ask, “Braska, is this a dog?” (The key being to choose something that is as far wrong as possible….not just another letter, but something far out.)  She should answer, “No,” of course.  But usually, she will continually answer “Yes,” until we tell her to try again and repeat the question along with a cue sign for the correct answer.

The fact that she’s getting this is so neat.  She’s really starting to take all this crazy good, well-articulated, speech of hers and combine it into useful language.  And that’s fun.

Monday, when we picked her up from my parents’ place, I realized I hadn’t called the school first thing to tell them she wouldn’t be there.  So I said, “I forgot to tell your school that you weren’t going to be there today.” And I went to get the phone. She came with me and said, “Call Miss A___.”  Yep, that’s what we did.  She connected that telling the school anything would mean that we should call Miss A.  Nice.  Good stuff.

Mommy report: Skill surprises

I’m a horrible blogger lately.  No excuses except life. 

BUT--

There’s a couple things I just don’t want to forget that have happened lately relating to Braska’s development.

• We’re just beginning work on potty training.  I won’t go into great detail because that’s not really me in an area like this.  Suffice it to say that both girls are loving the process, and even though they’ve been totally fine to go for quite some time now, especially Braska, they’re picking up pretty quickly on the routine.  We’re not in “full training mode” or anything, but the preliminary work is going well.
• When I drop Braska off at school in the morning, she is to take her backpack to her cubby and then we go wash her hands and find her nametag.  The other morning she took her backpack (which is actually too big for her to wear…causes balance issues even though it’s a mini-backpack) and carried it right to her cubby.  Leaned over and patted her name on the bottom of it and said, “Braska’s cubby.”  Nice!  We know that she can recognize her name, but it’s been reinforced a couple times lately and with others besides just me, which is fun.
• She also can do her washing-hands and nametag-finding procedures by herself, too.  I generally help her enough that I don’t realize what all she can do herself.  I stepped back one day, not intentionally, but she didn’t wait for me and continued her morning routine just fine!  She stepped up to the big sink (on her stool), turned on the water, reached for the soap (automatic motion sensor kind…waited appropriately), didn’t quite get it scrubbed all around before it got washed off, but oh well.  She rinsed and turned the water off.  Then she stepped down (with assistance, steps are still very hard) and walked to the paper towel dispenser, pulled the rope 3 times like they’re supposed to (counting loudly “one! two! three!”), tore off the towel, dried her hands and walked to the trash and said, “Throw away!”  She marched her tiny self over to the table and found the correct nametag and said, “Braska’s nametag” and handed it to me to put on her back.  I told Julie that morning that I clearly have been holding her back by helping so much each morning.  She doesn’t need so much!  Amazing!
• Her teacher also told me that she can identify her two friends’ names from her own and will say each of them correctly when shown the names.  (On her “small class” days, two days a week, the class is just two little boys and Braska.)  The teacher held up one name and Braska proclaimed clearly, “Dominic!”  Then they showed the next, and she said, “Braska!”  And then the third one she studied for just a sec and said, “Colter!”  Apparently this has happened more than once and in various name order. I had no idea… 
• We’re preparing for her IEP meeting at the end of October.  Not too much to prep for this time, though. Our team is good, she’s met many goals, and I think we’re in good shape for this next year.
• She’s now good with her letters—upper AND lower case--thanks to Preschool Prep.  She can do her numbers 1-10 on sight and in order.  She can count to 20 consistently.  And she’s got at least 8 shapes down as well.  She’s doing well matching items of the same color, but she still struggles with naming colors appropriately.  She always says *a* color, but it’s not always the *right* color.
• And NO SICKNESS YET!!!  (For Braska, that is. Kinlee’s had it, but Braska’s not caught anything! Woo Hoo!)
• Her feeding is picking up a little, though it’s very slow. She’s just starting to agree to chew on something once or twice, and only if it’s in a pouch (so that pieces aren’t coming out into her mouth, which bothers her greatly).  But with a Ritz cracker, she will bite a piece, sweep the large pieces out of her mouth with her tongue, but she is handling the little pieces and crumbs pretty well. This is a HUGE improvement.
• Still no drinking of any real quantity. No straw success yet.  But she can raise an open cup to her mouth and sometimes get a little.  We only put a tiny bit in or she ends up soaked!  But she’s becoming more cooperative with the work process.  Our feeding therapist/OT is GRRRRRRREAT!

That’s all for now… I’m exhausted from a night of both girls being up numerous times last night.  Not sure what was up, but they really ganged up on me last night.  Hoping for better sleep tonight!!

Me ‘n Jack: New teachers, new room, new friends [Down syndrome, preschool]

Today was the first day of school!  I didn’t get to stay the whole time since I’m not all the way better from surgee yet, but I had a lot of fun while I was there!

 

Me and Jack decided to wear our shirts that he got for us on his trip a few weeks ago.  He came to my house before school so we could take some pictures.

 

“Good morning.”


Braska: “We’re not going in the house. Pictures are outside today. You ready?”


Braska: “Come over here, and we’ll let KiKi in the picture with us.”

Jack: “What if I want to just stand here?”


Girls: “Is he going to sit down?” “I don’t know.” “Does my hair look ok?”


Braska: “What if we kind of sit like this?  It’s what the cool kids do.”


Jack: “Ok, I’m here. What now?”

Girls: “Just wait for Mommy to take the pictures. Do your hands like this.”


Jack: “You want cheese? I’ll give you cheese!”

Braska: “Don’t look now but he is being goofy again. No! Don’t look!”

KiKi: “He’s still pretty cute, though.”


Then we took some more pictures in the hall by our classrooms.  We’re not in the same class this year.  I don’t really like that, but at least he’s right next door.  It was really weird to go to meet new friends without Jack.

”Are we done yet?  It’s almost time for school!”


”Please, God, help me make some fun friends in there.”


”Here’s the plan… if you miss me, just knock on the wall three times and we’ll meet in the hallway.”


”I like my cubby, but seriously… why can’t Jack be in my class with me? Where is he?”


Me and Jack both had good days at school.  Tomorrow I get to stay the whole time because there’s only 3 kids on my small class days.  Then next week I get to go regular all the time!  I like my new teachers and I think my new friends are really nice too.

 

While Kinlee was waiting for me to get done at school, she played on the pirate ship.

 

She went around and around and around and kept going down the slide.


Then she found some great big balls. Almost big as her!


Here’s some little movie of Kinlee playing.  (Grandmas like these kinds of movies.)

Make an on-line slideshow at www.OneTrueMedia.com

YAY for school!!!

Comparing comparisons [Down syndrome, siblings]

Today I received an email from a blog friend (who I didn’t recognize immediately…sorry!) asking a question that prompted what I have been meaning to post about for a while.  So I asked permission to share the email and response, removing identifiers, for a couple reasons.

1. I don’t like to rewrite things when I don’t need to.  Who has the time?
2. I know there are SEVERAL of you other blog buddies out there who can relate to this situation, and I’d really love to share your input with her as well.

So read along, and please share your thoughts…if you want to do a post of your own, or you already have one that’s relevant, leave a link in the comments. Thanks.  Online support is VITAL, I think. I’d be lost without all the things I’ve learned from the other “DS moms.” (I know…not PC.)

______________________________________________

Her email:
I have a 2 1/2 year old who has down syndrome, and an 11 month old who is 'typical'.

My question for you is: how do you not compare them? At 11 months, V is doing more things than R did at 18 months. 

It scares me how fast V is learning and reaching milestones.  I am ashamed that I even compare them at all.  It's so hard to watch R at her therapies, struggling to climb stairs, or say a word, or stack a block, yet V can do those things and we haven't even showed her!

I'm sorry. I don't mean to vent. I just thought you might have some advice for a mom with an older child with special needs and a younger child who will soon surpass the older.

Thank you.
_______________________________

My response:
Hi,

I’ve been debating a post about this, formulating it in my head very recently.  Funny that you happened to write today.  I don’t know that I have any great advice, but I’ll share how it looks for me.

As you might know, my girls are 27 months apart, Braska will be 4 in November and Kinlee is a few days away from 17 months.  The simple answer is that I DO compare them, sometimes just because they’re my kids and I think every parent marvels at how different and how similar their kids are, no matter what their chromosome count is.  Sometimes I enjoy looking at how Kinlee at 17 months is the same size Braska was at almost 3 years old.  It’s fun to me, not to Braska’s insult, but just because I enjoy their differences.  I love to take pictures of Kinlee in things that Braska wore, though now, they are wearing many of the same things!

That said… there are times when it’s not as “cute” to compare, and I’ve found that recently I’ve been faced with the hardest issue.  It surprised me, but I’ve had to deal with it a little more than I expected.  You see, Kinlee and Braska basically started walking at the same time…Kinlee was 13 months, Braska was 40 months.  Braska has progressed well, is getting stronger, and has gained better balance, but she is still very wobbly and very much a “new walker.”  Kinlee sped right past her, handling steps more skillfully, climbing more, balancing better, almost running at this point.  Braska is significantly delayed in her gross motor—it is one of her toughest areas, as she has severely low tone.  We know this, we knew this would happen, and it was ok.  I’m not too bothered by the walking issue.  BUT in the past couple months, Kinlee has taken off in her speech and language.  This is Braska’s STRENGTH!  Braska’s done extremely well with speech and enunciation, especially in the realm of kids with DS, and we’ve been very proud of her.  We work with her, but it is clearly a natural strength of hers.  With Kinlee fast approaching Braska in the speech “race,” I realized the other day that soon, ALL of Kinlee’s skills will be beyond Braska’s.  And that was hard for me.  I could deal with Kinlee passing her up in the weak areas, but once she overtakes her in the area of strength…what else is there?  She already uses “yes” and “no” more appropriately than Braska, who only this past week has started using “no” when she has a preference that would make it the right choice.  She can make her requests, follow directions, and understand a more complicated situation much more easily than Braska can.  It’s all a little hard for me to accept, but yet I am excited Kinlee is doing so well.  How to live in both of those worlds?!?

I never expected this to be a concern for me.  We don’t really struggle much with what Braska “can’t” do. I’m fine with her pace of learning, I expect her to do her best, but I don’t care too much about where she falls on a chart or in comparison to other 3-year-olds.  And yet, I’m hit by this situation of Kinlee preparing to fly right by her in the milestone sprint she’s on.  What to do about it?  I don’t know.  I must refocus back on the fact that Braska is a phenomenal kid, just like she is. She is by far the sweeter, more compliant, consistently happier, easier to deal with, and more loving child.  And I love that about her.  Kinlee is pretty great in her own right, but she’s a challenge in many of these areas, which I think is probably to be expected, and yet we don’t really KNOW what to expect. 

I do SO get what you mean about how the younger can just GET things, like without being taught specifically for hours and hours before producing a result.  It’s been amazing to watch Kinlee surprise us over and over.  Last night I took her to the store with me, and she looked over at the side while I was choosing a loaf of bread and said “Buns!”  And she was right.  They were hamburger buns.  Something we NEVER have in the house.  I think we’ve used them once at her grandparents a couple weeks ago… how in the heck did she know that?!?  And animal sounds… we basically were reviewing with Braska, as we often do, just playing the “what does it say” game, and Kinlee knew them all right on after the first time through!    I can’t get over how one day she doesn’t know (fill in the blank) and the next day she knows it completely!  Braska has serious feeding issues, is on a g-tube, and isn’t anywhere near feeding herself, because she doesn’t really want food in the first place.  Kinlee was given a spoon, shown how to use it once, and she has a decent grasp of it.  Not that it’s perfect, but she gets it.  Amazing!  We often refer to Kinlee as the “superhero” of the family.  But then Braska is the one who has endured open-heart surgery and thrived with beauty and grace throughout the whole struggle!

Would I want to change Braska to make her “keep up” better?   Nope, not at all.  I’d love it if she were to be able to learn more easily or grasp concepts more fully, but I don’t know what other things we might lose in that adjustment that I’m not willing to let go of.  I have come to believe, once again, that she is precisely who she was designed to be, and I can only adore her for being so purely that.  There is no pretense to her, she doesn’t try to be what she’s not.  She’s 3, she’s a girly girl,  and that’s all that’s there.  And I like it that way. 

I don’t know if this helps any, but I can only encourage you that there are a lot of us out here who are in the same boat.  I have a few blogger friends who have a kiddo with DS as the oldest and then another one within the next couple years.  It’s amazing how similar our stories are, and yet how we each handle it with our own style.  If you wouldn’t mind, I’d love to post your question (names removed, so you wouldn’t be identified at all, if you like) so that some of the other moms in this position could offer their insight as well.  Would that be ok with you?

The day that Kinlee uses her first full sentence in a more concise and language-appropriate way than her sister, I’m going to have trouble with it, even while I celebrate her accomplishment.  I hate to see Braska be truly “behind” her little sister, but I know that Kinlee is going to be a great leader for her to follow after.  Braska will benefit greatly from Kinlee’s being “ahead” of her!

Many blessings… love them like crazy, and celebrate them, no matter how quickly or slowly they got to the sweet spot. :o)

_____________________________

How would YOU answer the question??

Braska: Last school day, for now [Down syndrome, preschool]

Thursday was a big day for me.  It was the last day of school for a while.  And it was the last day with Miss Natalie and Miss Sue.  They are my favorite teachers, so I wish they could just always go to school with me.

Before school, we took some pictures… you probably figured out by now that Mommy ALWAYS takes pictures. 


Mommy says this is my Sincess Kennedy smile.  It makes her think of my friend Kennedy when I make this cute face.


Then we went to school.  This is my classroom.


When we first get there every day, we have to wash hands. First we turn on the water.

Then we get soap and wash wash wash! I love looking in the mirror, and Mommy tries to get me to look at my hands so I can do a good job.  But it’s way more fun to make silly faces in the mirror!


After we turn the water off, then we get a towel.  We pull on the handle 1, 2, 3, and then we stop.  We tear it off and dry our hands.  Then it goes in the trash.


Then we can get our nametag off the table and go play.  Well, after we match our picture on the board with our name.  But I just like to go play!


When it’s almost time to go home, I get to sit in this little chair when we all sit around on the floor and listen to a story and sing some songs.  I like to sit in it even when we’re not singing or reading.
 
When it’s time to go, we all get our backpacks and sit at the table.  Jack is sitting like a good boy at the table waiting for his mom.


Here’s me and Jack with Miss Natalie.  She is our teacher.  We like her a lot!


This is Miss Sue, and she helped me a lot when I wasn’t big enough to walk yet.  She is SO nice!


I gave Miss Sue some extra hugs while we were getting ready to go.

It was a pretty exciting day.  Now I have a few weeks to do other stuff with Jack before I go back for Summer School!  I can’t wait! I love school!

Do you know your letters?? [Down syndrome, speech]

Here’s my last movie for you to watch. Here’s the first and the second if you missed them. At least until I make some more!  This was when I was working on my letters and numbers… you can say them along with me if you want to practice, too.

Make an on-line slideshow at www.OneTrueMedia.com

I like it when… [Down syndrome, speech]

We got a really fun book at the library a few weeks ago, and it is my favorite!  I know all the pages and I can even sit and read it by myself when Mommy is busy.  She saw me reading today and thought we could make a movie.  Usually she doesn’t talk to me when I’m reading, but she said this worked a little better to keep me going.  I can take a long time to read a book!

So here’s a little movie…

Photo and video editing at www.OneTrueMedia.com

(Mommy note:  She had just refused a nap, thanks to a 5-minute snooze in the van.  She is a little sloppier than usual, but I think you’ll get the idea…)

There’s two more movies from today, but I’ll show them to you tomorrow. Make sure and come back to see them!

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.

Growing up numbers

Today Miss Cathy came to see me.  She helps me make sure that I’m eating good healthy things and getting enough cal-lor-ees.  She has one of those silly scales that I have to sit on to see how big I am. 

My new numbers are bigger than I’ve ever been!  The scale said 23 pounds 4 ounces today.  And I was 33 3/4 inches tall!  Woo!  I’m getting bigger!

Mommy says I still got alot of growing to do, but it’s good that I’m trying hard.  My jeans have not been fitting me very well lately because my belly is getting smaller.  (And I don’t really have a belly anyway!)  I even had to change my pants at school today before Mommy left me for the day because my jeans wouldn’t stay up.  Ha!  I had droopy drawers, Mommy said.

Me and KiKi can wear the same pants, but KiKi is a little shorter, so I need my pants to be a little bit longer.  But when we wear our summer clothes, we can wear the same ones.  Isn’t that funny??  I need to get to working harder to grow so KiKi doesn’t get bigger than me real soon!

KiKi did her numbers today, too.  She was 21 pounds and 4 ounces.  And she is 31 inches tall.  So she’s going to catch me soon, I think.  She already has a bigger belly than me.  I think it’s funny when we’re in the bathtub to play on her belly like a drum because it’s kind of big and out there.

We’re getting bigger.  I guess that’s what we’re supposed to do.  But Mommy and Daddy are trying to get smaller, so I don’t know what’s going on with them.  Maybe they want to get little like me and KiKi because we’re so much cuter!

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.

Mommy report: Update, part 1--Feeding

Dishes, showering, laundry—all on hold.  I just can’t keep putting off an update on this girl or I’ll forget all this before I can get it down.  Since this is my main record of Braska’s goings on, it’s important at this stage.

We’ll start with feeding, and there will be at least a few other categories to follow soon.

To refresh for anyone who might be a newer friend here on the blog, Braska doesn’t eat orally, not regularly, never has.  She has a g-tube/button, and she gets all her nutrition via Pediasure through her button.  She has no medical issue that causes this problem. This is not a “Down syndrome thing.” She chooses not to eat.  She does not show hunger or thirst, and she couldn’t care less if she eats or not. This is a behavioral issue.  Even with our ability to feed her without her help, she still has always been underweight.  At 34 months, she is just under 22 lbs.  Because her weight is low, we cannot do more stringent caloric challenges (holding back on nutrition/food/milk, causing her to become more physically hungry and want food) because she’s not got any weight she can afford to lose in that process.

The day Kinlee was born, Braska ate some pudding, if I remember correctly.  But she ate that day, and the following days.  It was very small amounts at first, a tablespoon or two on a good day.  Sometimes only a spoonful, but we offered it and required that she eat something a couple times a day.  After about a month, she was eating fairly consistently at the 2-3 tablespoon mark, usually twice a day.  We started up again with her nutritionist/feeding specialist, and I could tell immediately that it was not going to be a good thing.

You see, the smallest thing can change her course when it comes to feeding.  A strange person present during feeding, an unpleasant experience because she’s too tired.  A little choking sensation, though recovered quickly, can ruin her for days.  When the nutritionist came that day, I had a bad feeling.  She’s not a bad person, but I just had a gut feeling it was too soon for Braska.  And I was right, unfortunately.

She refused to eat for her, and she then refused to eat for me for the following 3 weeks.  Yep, it can go just like that.  She decides she won’t eat, and that’s it.  There’s no “oh, she’ll get hungry and eat” thing.  She can go days without food or drink and still not ask for it.  She’s shown that by ending up in the hospital when she was younger.  Super stubborn is her thing.

With alot of work, we got her back to eating a little, and she has continued to progress slowly.  We cut out her feeding time with the nutritionist, and made those visits only about making sure she was getting enough and doing a weight check.  This has gone well.

Most recently, she’s been surprising us with how much she is accepting.  Generally, her habit has been to just taste things.  She would accept as much liquid (like a sauce or something) that would remain on a fork.  Not much.  But taking quantities of food has never been something she’d do.  She also has always been a high-flavor girl, preferring tastes that are very spicy, highly seasoned.  Nothing as bland as baby foods or unseasoned vegetables. 

But lately she has been taking baby foods, straight from the jar, sometimes with added fat and calories from various sources.  And she has taken an entire 4 oz jar at a sitting on several occasions in the last couple of weeks.  That’s a BIG deal around here! She is also becoming much more willing to take whatever is offered.  She hasn’t really rejected a food in a while.  She’s also taking sips from a sippy cup with no no-spill valve in it. Very small sips, but it’s something. No straw, no open cup, and of course, no bottle.

She still doesn’t ask for food. She will not remind us that it’s time to eat if we’re busy and don’t offer solid food. But she’s accepting it when offered with greater consistency. Sometimes she will still get obstinate and not want to open her mouth, but she can be coerced with minimal work.  That’s great progress for her. 

Textures and self feeding are still a long way off.  She only takes pureed foods, yogurt, pudding, with the most textured accepted food being baby oat cereal with Pediasure or juice.  She takes it a tad thicker than Kinlee does, but still not that challenging.  For now, we’ll continue to work on quantity.  Soon we’ll try to address textures, attempting to chew (which she will NOT do at all), and self feeding.

Feeding issues are so frustrating.  And I’ve yet to find any other kid who is as old as Braska, has no medical issues related to feeding/digestion, and still refuses as thoroughly as she does. It’s not like she only eats 5 things, or she only wants PB&J with crackers for breakfast, or she won’t eat her vegetables at dinner, or even that she’ll only take a bottle. It’s lonely in this kind of position, and there’s not alot of info out there, but that makes our progress even sweeter.

We know very well that she could decide tomorrow not to eat for days, weeks, or months.  We always rejoice with a bit of a guarded sense.  But I’m glad she’s come this far.  We’re working very hard to protect the experiences so that we don’t suffer any setbacks. I’m proud of her that she’s come to this point.

Stay tuned for update, part 2—gross motor.

Braska: Wanna know how big?

Mommy likes me to keep track of how big I’m getting, so she wanted me to put it on here so she won’t forget.

Yesterday we went to a place and they checked to see if I had gotten bigger.  When they put me in the little chair that tells them if I’m eating good, it told them I was 22 lbs.  That’s really big!! I think that’s bigger than I’ve ever been before!  And then they made me lay down on this big hard thing to see how far down my feet went.  I did not like it at ALL!  But when they let me get up, they said I was 33 1/2 inches.  I think that’s good, but I’m not sure.

Anyway, I’m with Daddy and KiKi at Grandma C’s today so that Mommy can have some quiet time at home.  We’ve been kind of hard on her this week, and she was asking us to start being good girls again…especially KiKi.  She was really bad.  I’m the good girl, don’t worry.

Trading a sure thing for a question mark

I have mentioned before that our service coordinator with EI is the best. And she is. Or she was. Today was her last day with First Steps, and I’m not anywhere near happy about it. Sure, I wish her well, she’ll be a great asset at her new place and she’ll do a wonderful job. The kids will be blessed to have her.

But we’re less than 3 months from transition from EI to school. It’s a BIG transition. I’ve done my homework and I’m continuing to learn, but I was SO counting on her to make sure we got through it safely. The timing is just so plain sad.

And, though I’m trying to be open-minded, our new coordinator is new to the First Steps system, and that is enough to make me not feel confident. He’s probably very nice, he’s probably really smart, and he’s probably good with kids, but will he be full of experience and knowledge when I need it most? We’ll see… I’ll hope so. I’ve just come to find out today that some that were in her caseload are going to a much more experienced person. Since we’re transitioning in less than 90 days, it would have been nice to be in that crowd.

Thankfully, I’ve recently gained another ally in the process who I’ll be leaning on even more now. I’m going to be setting up a meeting with her next week to touch base and get on the same page. She’ll be involved with us for the next 3+ years at Braska’s school, so I’m looking forward to that.

It’s not the worst thing ever, it’s probably a really great thing for her, but still, I’m bummed that it will mean a less-than-smooth transition. It’s selfish, I know.

We’ll sure miss her, no doubt!

Braska: I love Signing Time and Miss Rachel!!

Last month, some guy broke Daddy’s window on his car when he was at work and that guy took some stuff from our car.  He took my movie player!  Can you believe that??  (You can read more about the story here and here and here.)

One of the movies I got at the library was in the movie player, and the guy threw it away.  Why wouldn’t he want to watch it?  That’s what I wanna know!  Anyway, since he threw it away, we had to pay the library for the movie, and Mommy talked about it on her page.

Miss Rachel, the one who I watch every day on Signing Time and Baby Signing Time, saw Mommy’s story about it, and she left her a note.  They talked a little and Miss Rachel said she would send me a new movie since that guy took the other one I borrowed from the library!  Isn’t that super nice!?!

So the other day we got a box from Miss Rachel and this is what it had in it… (Remember, you can click on pictures to see them bigger.)

Can you believe all that stuff??  Me and Mommy were SO excited!  I just kept telling Mommy “I want Baby Signing Time movie please!!” 

There are some cards that have words and pictures of the signs on them.


Here’s the movie that the guy took from us.  Miss Rachel even wrote me a note on it!


And she sent T-shirts for me AND for KiKi!  


This is a picture of Miss Rachel and a note to me.  We’re gonna put it in a nice frame so I can keep it forever!


And this is the movie that she sent so that the library could have theirs back too!!
  

There are also some fun things like stickers in there for me and KiKi to play with.  They go on our skin.  Mommy says it’s like a taa-too.  Oh, and there’s CDs too so we can listen to the songs and sing along when we can’t watch the movies!  I tell Mommy “I want mooosic, please!”

Isn’t that the nicest thing you ever saw?  Miss Rachel did such a fun thing for me because she sent me my favorite things ever.  Signing Time movies!!!

Thank you, Miss Rachel!  I am watching them lots and lots.  And I especially like to sign “wind” when I lay on the floor by the thing that blows cold air out at me.  I always tell Mommy “Cold! Brrrrr! Wind!!”

If you don’t have Baby Signing Time movies, you should go get some right now!

(Mommy note: The signing has just really taken off, another spurt, except that she can verbally say all the words too.  I hope to have some video of her latest stuff very soon.  The full-sentence requests are just plain amazing, I think!  And once again, many thanks, Rachel!!)

Braska: Swaaaiiiiiiiiiing!

I just love to swing.  And when I want to go outside and play on my swing, I tell Mommy really loud! "A-side! Swaaaaiiiiing!" That's what I did today.

First we went to church, of course...that's what Sundays are for, you know. I wore a new outfit from Miss Linda from Daddy's work.  She's so nice!

(Pssssst...don't tell Mommy I told you, but I wore this outfit last week too when we were at PaPaw's church for Daddy's Day.  Mommy doesn't like for me to wear things two Sundays in a row, but since we were at different churches, it was ok.  Just don't tell that I spilled the beans!  Here's a couple pictures from last Sunday at Grandma C's house.)

Daddy took my Sunday pictures today since Mommy was getting dressed and was in a hurry.
 

Me and KiKi both smiled for Daddy.  Mommy was surprised!


I got a picture of me with Miss Carrie and Miss McKenna today.  They're my friends at Sunday School and they take very good care of me.


After church, we went to the store and came home.  I got in some play clothes and we all went outside since it was a nice day.  It's been so HOT at our house for the last few days!  Today was much better, so we could go out for a little while.

Mommy said I look all grown up.  I do! I'm a big girl! I'm 2!


Since it was so nice, when I asked Mommy to "swaaaaiiing!" she said we could!
 


Tonight KiKi tried out one of my old toys.  I told her how to do it.  She liked it alot.  Maybe she'll put up some pictures on her page.

It was a pretty good day!  I like when it's not so hot outside!  And I LOVE to swaaaiiiinng!