Wednesday, March 26, 2014

a recap...

So Millie had another mini barrage of appointments earlier this week.

Wanna' know how they turned out?  ;)

The verdict: Millie's kidneys are growing and are withing normal ranges.



We did our appointments with no problems, other than an unusually crabby Millie. She underwent her renal ultrasound Monday morning and then we met with a rep. to get some more training and info on how best to use her new talker.

On Tuesday, we met with the neurologist.

It's funny. We weren't worried. Or overly worried. But when we don't worry, that makes us nervous. Every time we're not worried is when we've gotten the wind knocked out of us (e.g. her first MRI, her swallow study, etc.).

So we went into the appt. both calm and yet not so calm.

Happily, the nurse told us, even before the dr. came in, that everything looked quite good.

So, yes, Millie's kidneys are growing and are within normal ranges.

She is on the smaller side of normal, which is to be expected, but they're all good.

We talked about a range of things, from her current therapies to recent progressions to challenges, but everything was positive and rosy.

Happy dances...

We also began the discussion about how, or when, or if, we should take a look at taking her off her seizure medications. She hasn't had a seizure in quite some time and we'd like to see if she could be medication-free at some point.

Yes, it could be the meds that are keeping the seizures are bay, but it could also be that she's grown out of it and has overcome them too.


Come November, we will go in for a regular ol' EEG (not a 48-hour one) and then begin the steps to take her off her meds.


We're excited. Cautiously optimistic.

A lot can change in eight months of course, but to know that she is progressing as well as she is that the dr. herself is comfortable with the idea, it's just awesome.

We're feeling good.

- Bethany :)

Wednesday, March 19, 2014

Just because.

... because sometimes you need to just let them make a mess.

Or, really, sometimes you need them to just entertain themselves for three whole minutes.

* smile *

Actually, we've been trying to do more of this, what they call "food play" in her therapy circles. Millie has long, very long, had aversions to certain textures. There are some things she simply won't try to eat and some things she'll taste but not eat.

For instance, fruits. Real whole fruits. We've been on a fresh food kick again recently (which is a good thing) and she's really loving the cantaloupe, strawberries, grapes, etc. But she doesn't really eat it. She sucks on it, til all the juices are gone, and then, if you're lucky, spits it out into your hand. Otherwise, she pockets the leftovers in her cheek, sometimes for an hour, until she starts gagging or choking. Of course, on occasion, she'll accidentally swallow it.

It makes for fun times at home, constantly watching to see if she's going to choke...

But, really, it's great that's she's trying it. It's a real win.

Yet, there are certain foods she won't even try, dry crunchy things like granola, nuts or cookies.

So, we've been doing more food play, like letting her smear Cool Whip all over the table and "drawing" in it with crunchy breadsticks or granola bars. We'll hide little toys or animals inside and she'll try to unearth them.

The above photo, though, was more or less driven by necessity. I was trying to cook and had just opened a container of yogurt when Millie flipped out because she wanted it. So I gave her a dollop in a bowl as she also happily discovered the empty egg carton. It kept her occupied for a few moments so I gave her a few things of sprinkles too.

She had a blast.

And I finished making my muffins.

A real win-win.
- Bethany :)

P.S. Yesterday's preschool meeting was great. It sounds like it is going to work out quite nicely. We'll go back in early April to actually register her. But we're excited and Millie absolutely loved being there.

Tuesday, March 18, 2014


We are in limbo.

There are two early special-ed programs for children who are not yet school aged. The first, which Millie is currently in, benefits those from birth to age 3 (or just under, actually). Once the child turns 3, s/he is re-evaluated to see if s/he will receive center-based care (like a preschool setting).

Millie, barring any extraordinary developments, will continue to receive speech therapy into next year but we do not yet know whether she will qualify for center-based care. We're supposed to learn more later on, probably in May.

It's difficult for me to understand this. I try. I do. But the kid doesn't talk.

OK, she kind of talks. She says four phrases/words consistently: mama, dada, all done, and "bub-bub"  (which could either be bye-bye or bubbles, depending on the circumstances).

She is capable of talking -- just last week she said blue ("boo"), yellow ("yah-o") and purple ("pup") -- but it's never consistent.

So here we are, trying to lay the foundations for what will hopefully become her education, teaching her colors, letters, shapes, etc., but it's all a struggle. I mean, how do I know if she's understanding that "M" makes the "mmmm" song if I can't hear her do it?

Well, we've come to the proverbial fork in the road.

We won't know until May whether she qualifies for center-based care.

Meanwhile, the preschool Lola attended (at age 4) does offer a 3-year-old program, but the deadline to sign up is in April.

You do the math. The timing doesn't work.

So, after sending a few emails, we've come to today.

This afternoon, Ray and I (and Millie) will be meeting with Lola's former preschool teacher, who would be teaching Millie's 3-year-old program, if we sign her up. We'll be showing off what Millie is capable of doing and demonstrating the ways we've identified to best communicate with her.

We'll find out whether it all seems to be a good fit for everyone.

I see us moving forward with this preschool regardless of what happens with the district. Because even if she does get some kind of center-based services, more classroom time can't hurt. Every little bit helps, or could help...

I'm more anxious about the meeting than I expected to be, though I'm not sure why. We know the teacher fairly well, she's excited and enthusiastic, willing to try most anything.

Maybe it's because it's all coming up again, another renal ultrasound next Monday, a neurology visit on Tuesday. Nothing special, nothing of too much concern (that we know of).

Or maybe I'm just in a funk.

More to come.
- Bethany :)

Monday, March 17, 2014

science fun!

A little more than a week ago, we took the girls to our local science center, where they could explore the exhibits and interact with some of the animals there.

They had a blast.

Lola, especially, was really into the exhibits and learning how things work. Millie, well, she was just happy to be included in the day's fun.

And who knew bubbles could be terrifying? Pop!

But it was the animals that stole the show.

From seeing the birds up close...

... to examining snakes...

... closely.  

Way too closely.

I kid, I kid. I mean, really, I was quite impressed. The kid that is terrified of many, many things proved, once again, that she's actually pretty fearless.

Note the tarantula.

Fortunately for us adults that were getting a wee bit creeped out (yeah, OK, that was just me...), there were other, more adorable, animals to visit with...

Like rabbits.

And walking sticks.

We were there for nearly two hours. And the girls were not thrilled when we said it was time to leave. It was a super fun day and I'm so glad we went. 

And so were they.
- Bethany :)

Thursday, March 6, 2014

family time

This has been a long, borderline miserable winter. I mean, we expect cold and snow during these months, but I can't remember it ever being this cold for so very long.

So we find our amusement indoors wherever we can and try to be creative.

This past weekend, we spent a good thirty minutes on the staircase.

What walks down stairs, alone or in pairs
and makes a slinkity sound?
A spring, a spring, a marvelous thing!
Everyone knows it's Slinky.
It's Slinky, it's Slinky,
It's fun, it's a wonderful toy.
It's Slinky, it's Slinky, it's fun,
It's a wonderful toy.
It's fun for a girl or a boy.

Lola at the top, she'd get the Slinky going while Millie (and Ray) would try to catch it at the bottom. Meanwhile, Mustang was yapping away, trying to figure out what the darned thing was. He'd kind of lunge at it, making a play to get it, but quickly back away, afraid it was going to attack him back. It was rather humorous.

Millie was quite impressed.

It's funny how many little games there can be withing one big one. Millie's personal challenge was to get her hands on the Slinky every single time. Lola's goal was to get the Slinky past her, to get it to "walk" completely get down the staircase without getting stuck or falling.

Every now and then, success.

- Bethany :)

Wednesday, March 5, 2014

my 'baby' no more...

About two months ago, I took the toddler potty out of storage.

I cleaned it. I set it up. I learned the ASL sign for potty.

We waited. I was in no hurry, but I did want her to see it, to understand what it is, who it is there for.

About a month ago, she began sitting on it. Fully clothed for pretend potty breaks.

A couple of weeks ago, I made her sit on it naked, before bathtime. She screamed.

We backed off, and waited some more, letting her come to it in her own way, her own time.

About a week ago, she began signing potty, then running over to the bathroom to go sit on the potty, again fully clothed.

A few days ago, Millie was ready for bathtime. Ray figured he'd give it another try. So he asked if she wanted to go potty. She happily went over, sat down, and went tinkles!

Since then, she has used her potty about six or seven times, each time without fail.

This morning, when I went to get her dressed, she flipped out, signing "no" very emphatically every time I went to put on her diaper. She wants big-girl panties like Lola.

So, it looks like we have our plans for the weekend.

Potty-training. I was really kind of hoping to wait until it warmed up a bit. But she's apparently ready, and we don't want to miss the window to at least get started...

My littlest little "baby" no more...

What a big girl.

- Bethany :)

Tuesday, March 4, 2014

Lola the gymnast!

Lola had her first gymnastics "meet" on Saturday. The gymnasts went through each event and did their routines (with coaching). They were then scored by judges, so everyone who scored over 9.0 would get a blue ribbon, 8.0 a red (which was actually pink because they were out of red), 7.0 a white, and so on.

Lola was in the youngest group, of course. And once we realized it was a "meet" and not a simply show, or demonstration of what they've been learning, I didn't know how she'd do.

 Here's how the day went...

1. Begin stretching.

For Lola, that translated into looking around, confused and overwhelmed, as everyone else gets on the floor and stretches. But we were happy she was on her own down there, and not too scared. I mean, really, she wasn't crying or begging me to stay with her. So this was a good start.

Eventually, she sat down and made a few half-hearted attempts at stretching.

2. Warm up.

I take this as the kids were asked to line up...

And then jump...

 Lola always gives it 110 percent.

Afterward, Lola looks a bit bashful, almost like, "Oh my, did I do that in front of everyone?" I love this expression.
 3. Then it's time to get things going. And Lola gets excited...

She spots us cheering her on from upstairs, "Hi Mommy!"

Millie gets excited because she saw Lola and Lola saw her!

Hi Sissy!

That's my sister!


4. Lola's group heads to their first event, the vault.

Lola starts to get nervous...

Now, the vault is something she's never really done before, that I'd seen anyway (though I'm sure they work on it in class). She does the little springboard, but I'd never seen her to do the full, big one. Every time I've suggested it, she shakes her head and moves away.

But on Saturday, she was first, and she flew.

 Right up to the top.

She immediately earned her first ribbon, a pink.

She was very happy. Very proud of herself.


5. Then it was time for the beam. Considering that she has her beam in the living room, you'd think this would be her favorite or best event, but it's not. She gets really nervous on the "big" beam, so far off the floor.

But she got up...

And then came down...
(Look at her feet, they're actually not touching the beam, she is just beginning to topple.)

She earned a white ribbon.
6. Then it was time for the bars. Her favorite event.

And, like we knew she would, she shined.

Another pink ribbon.

7. The floor was last.

This is one I never know what to expect. She does well in somersaulting and her jumps, but she has struggled at cartwheels. Plus, this event is directly in front of the whole crowd of people who came to watch their kids  perform.

So I didn't know how she'd do.

I didn't take pictures. I snuck down and videotaped it instead. (More on this later, the video apparently is not working. )

Anyhow, she did wonderfully! Her cartwheel was awesome.

She earned another pink ribbon as her meet came to a close.

Afterward, she was walking on air, so incredibly proud of herself.

 Our little star.

- Bethany :)