Tuesday, July 30, 2013

a fresh start

After sulking all last week, I pledged to pull myself together this week, to not focus on the the what-ifs about Millie's newest test order, but to optimistically plow forward.

I want nothing better than for Lola (and Millie) to have a fun-filled week.

Also, I've been a wee bit panicky about Lola starting kindergarten in a month, knowing that I probably haven't been quite as focused on her skill development as I should be.

So I came up with a plan.

I read something in Parents magazine the other week about taking kids outdoors, bringing along some paint-sample card things to match outdoors plants or objects to their corresponding color.

I took that idea, tweaked it a bunch and introduced Lola yesterday to a new adventure game: Lola's Scavenger Hunt.

Now you should know, I am not a crafty mom.

In June, we made an egg carton crocodile, and halfway into that five-day project I regretted it. Adding insult to injury, the stupid crocodile fell apart about 35 minutes after we finished...

 (Nummy Merida snack...)

So this was outside my comfort zone some, but I really want to make this week super fun for Lola.

First, she got to pick out five crayons.


Then, once outside, using one crayon at a time, she got to match the color of the crayon to something outdoors.

She took the picture of the object next to the corresponding crayon...


And then we went inside to make a chart.

Five lines. Each one was more or less the same: First, she colored in a box with the corresponding color (i.e. green); second, she used a pen to write the word for that color (green); third, she colored a picture of what she found that was that color (a green chair); and then she wrote the word for that object (chair).


She loved every minute of it. More than once, I had to tell her to slow down because she was so excited about doing the next color she was rushing through the current color.

She was so proud of herself.


And, as an added, unexpected bonus, she announced afterward she would hang it on her wall in her bedroom so when Ray comes home Saturday, he can see what we did all week.

"So Daddy can know what we did when he wan't home," she said.

Ideally, we'll do this nightly, once Millie goes to bed, so Lola can have some one-on-one time with me.

I figure it's a good activity for indoors or outdoors and we can even do it if we run errands (they might think we're odd taking pictures inside the grocery store, but we'll go with it).

If nothing else, it gets her excited to practice writing and gives me a chance to help her polish some of her still-developing reading skills in advance of her first day of school in September.

First day of school.

First day of kindergarten.

How did she get so big so fast?!


- Bethany :)

Tuesday, July 23, 2013

sigh

Well, that's what I get for gloating.

We feel so incredibly great with where Amelia is at. We really, truly do.
But more tests are on the horizon.

I mentioned something, kind of in passing, at our neurology checkup last month, something about Millie's left eye. She wasn't doing it that day when we actually saw the neurologist (that would be too convenient, ha), so the doctor asked that I email in a photo or two.

Those photos now have prompted a third sedated MRI for our sweet girl. And a few other things as well, mainly blood work stuff.

Honestly, I do think it's all precautionary, that it won't end up being anything.

And in the last ten hours, I have occasionally wondered, Are we putting her through too much for no real reason? For just a possibility?

But you know what? I've thought that before and been proven wrong.

More than once actually.

So when the neurologist and the neuroradiologist both agree that a more detailed look is warranted, yeah, we're going to follow their advice.

Even if we don't really want to.

Trust me, none of us wants to put Millie through this. None of us.

We have a couple of months before the tests. So that's a good sign, I think. No one is telling us to take her in ASAP. But we have been told to monitor her closely and to report any notable observations.

My one regret? I forgot to mention the eye thing to her pediatrician on Monday, when Millie went in for a regular ol' wellness checkup. After going over her medical history, he asked me if she was now all done with her diagnostic testing and such and, honestly, I was so un-worried about the eye thing that I forgot about it. All I thought to mention was that they want to continue to monitor an abnormality in her kidneys.

So now he's going to get an order for a pre-op appointment this week and think I'm nuts.

Oh well. My own husband reminded me today that he often thinks I'm nuts too.

* smile *

- Bethany :)

Monday, July 22, 2013

Dinnertime!

You know those super laid back, relaxing weekends?

The ones where you lounge around, simply hanging out at home, no plans, just leaving everything on the back burner for another day?

Yeah that was not our weekend.

Ray announced somewhat casually on Thursday that he was going to do our long-planned-but-never-accomplished eat-in kitchen project. Since it wasn't presented really as a choice - and I've always wanted to get it done - I didn't object.

Here's a timeline.

We bought our house in April 2010 and immediately began addressing the rather sad-looking kitchen.




We did it one piece at a time.

We painted first.

Then Ray replaced the counter tops, the fixtures, the fan, stuff like that. (I couldn't find pictures for some reason, strange...)

Then, in early 2012, he tiled the floor.


This spring, he did the backsplash.


But through it all, the same old round oak table remained.

Really, the table is quite functional - it works just fine. Even after we broke the part that slides out so you can get an extension in and out, we really couldn't justify getting rid of it. Not to buy something new when we planned to build a custom eat-in kitchen.

But I was getting rather eager to replace it. The old table - its oak color - didn't match our new kitchen at all and, more importantly, its shape was awkward. It just didn't fit in our rectangular, galley-style kitchen.

So after three years of saying what we planned to do, this past weekend we actually did it.

(Or, well, Ray did.)

First, he made the built-in bench (with storage!).


And he put the tile table together...


Then, we went out shopping, looking for new furniture, figuring we would need an ottoman or storage bench of some kind for the other side of the table, and a black chair for the end spot.

After not finding anything we loved and finding it was going to be a bit more expensive than we wanted to spend, I had a ta-da kind of moment.

Instead, we bought some spray paint.

And I made our brown chairs black.



And our old, beat-up chairs look brand new!

It all came together perfectly. I am absolutely thrilled.



My goal was that it would all be done by dinnertime Sunday and we could sit down and have a family meal on our new table all together.

And we did exactly that.


With frozen pizza.
* smile *

- Bethany :)

Thursday, July 18, 2013

less 'special'?

No one ever sits you down and tells you that your child is now considered special needs.

Or at least no one did with us.

There was no set point where Ray and I looked at one another and together decided, "As of today, Amelia is now considered our special-needs daughter."

It came gradually.

Even after we first learned she was developmentally delayed, I always considered her just "behind," perhaps a wee bit lazy.

As the therapies piled up, she just needed "some extra help."

For me, I think it kind of set in when we found out she couldn't drink liquids.

And then, once she starting having seizures and was diagnosed epileptic, it became a given.

But, at the risk of sounding blasé, it was easy to say, then, that Millie was a special-needs kid. She wasn't walking, wasn't talking and was eating this chalky, gross concoction of thickened milk.

Today, as Millie is confidentially walking with some degree of ease, is signing with confidence, and even talking some (just a little bit at a time), it's harder to accept that term as easily.

Honestly, if it wasn't for her genetic diagnosis and her actually receiving early intervention services from our school district, I don't know if I'd even consider her special needs.

And I know, in my own mind (and heart), that I expect it all to be temporary.

There was a time, not long ago at all, when Ray and I tiptoed together through potentially difficult conversations.

We'd breezily start talking about a planned bathroom model and it would turn into a discussion about our long-term housing plans.

You could hear it in our voices as we realized we were approaching dangerous ground. We'd go from a lighthearted debate about tile colors to talking about "when the kids will be out of the house" and someone's voice would catch, too aware of that silent if.

Talking about the girls' college funds? If.

Retirement planning? Grand-kids? If. If.

That if remains, yes. But as I watched Millie walk about 100 yards today, going from the car to the hospital entrance and down about three hallways, not falling even once, I could feel it dissipate some more.

Things are good. Really good.

(Insert not-so-silent prayer here that they continue down this path...)

***

On a (somewhat) related note...

I figure I should keep track of where Millie is at in regards to her language.

I know at some point in life I'm going to want to know what she was doing when. So here goes.

In May, after about four months of consistent, steady training, Millie finally caught on to signing.

Her first sign was more.

Then she added help.

Soon, she was proficient at several signs:
more
help
please/mine
drink
eat

Next came cracker.

And then a modified version of music.

Two weeks ago, I met with a therapist who is very familiar with Millie's challenges but we hadn't seen her in a couple of months. She was shocked - pleasantly so - at how well Amelia is doing and how quickly she is catching onto new things.

She recommended that we introduce two new signs a week to continue to both build her vocabulary and challenge her.

So I just randomly chose to introduce dog (note: she knows this as dog, not puppy) and yogurt (which does not apparently, have a "real" ASL sign so we are using this one).

She caught on to those quickly (though she just thumb-sucks for yogurt right now).

We now are working on thank you, mommy, and daddy.

Next up, I believe, will be sister, cat, and outside.

It's been really fun to watch her progression. And, as she's taken to signing, we do here more verbalization as well. Her favorite thing to say is still "Hi Dada!" We also hear "all done" quite often and occasionally I'll get a "Hi Mom-mom."

One of the funnier surprises has been how enthusiastically Lola has picked it all as well. Sometimes, she even signs instead of talking herself. (Which I can't decide if that's a good thing or bad thing?) We'll be playing tickle or throwing her onto the couch and she'll come up signing for more before she can even get the words out.

So yeah, we're having some fun times in the Wesley home.
- Bethany :)

Wednesday, July 17, 2013

Tuesdays...

I used to play tennis.

In college, I spent up to three hours a day on the courts, pretending to have a forehand, hoping my opponent would hit to my backhand or give me a decent volley opportunity.

But after graduation, marriage and kids, I gave it up.

Yet, I always missed it.

Last summer, I tried to join a local women's double league but wasn't able to, for a number of reasons.

This summer, I decided to try again. I wasn't able to fully join up - I didn't know anyone who would be my partner - but I was offered the chance to occasionally sub for those unable to attend. As luck had it, after I agreed, I got an email from a woman looking for a long-term sub (about seven weeks).

Three weeks ago, I drove to the courts for the first time, both excited to step onto the court again and also nervous because I hadn't played in more than five years, since long before Lola was born.

It took me a few games to find my backhand, about a set to find the remnants of my serve. And I'm still searching for a forehand.

But I'm playing again.

And thanks to a newly developed fondness for running, I'm chasing down shots previously unattainable (I rarely actually hit them in, but I am, at least, getting to them).

Tuesdays have quickly become my second-favorite day of the week (after Sundays, when Ray is guaranteed to be home).

Between office hours, night meetings, doctor appointments, therapies, house-cleaning, dog-walking, kid time and much more, I don't have a ton of time for just me during the week.

And, yes, I feel a little guilty spending money to pay a babysitter to watch my kids so I sneak off to the tennis courts once a week.

But then I hit a winner, perhaps drop an ace down the T.

And it's completely worth it.
- Bethany :)

Tuesday, July 16, 2013

Lost in thought...


This is what I figure they're plotting...

Millie: "OK, so I'll have a diaper blow-up at 7:22 a.m., just as Mom is tying to get me and Lola out the door to day care..."

Mustang: "And then, as she turns to get you back inside, I'll go bolt and hide under the car so she can't get me into the kennel."

Millie: "Yeah, and then Mom will just have to give up and stay home and play with us all day!"

Mustang: "And I won't be home all alone again!"

Millie: "Hmm, you know, this might work even better if we get Lola involved."

Mustang: "Oh for sure, she'd be a great ally. She can really throw a wrench into Mom's plans."

Millie: "We might even be able to stretch it to two days at home if Lola was on board..."

Mustang: "You're not aiming high enough. With Lola's help, if she was completely committed, we could stretch it to a week. Easy."

***

You know life is good when you're imagining conversations between your 2-year-old and puppy dog.

Happy summer.
- Bethany :)

Friday, July 12, 2013

Dear Lola...

 

Dear Lola,

Lots and lots of people tell you how very much you're like Mommy. You look like me, you whine like me, you pout like me, we even share mannerisms.

But make no mistake: You're incredibly, giftedly different.

You are so compassionate. You stand up for your friends and animals, begging us parents to not get too mad at Mustang when he poos in the house or chews through the ottoman, spreading fuzzies all throughout the house.

You're sweet. You think of other people constantly, wanting to draw them pictures to brighten their day and let them know you're thinking of them.

You're challenging. In a fabulous way. You never accept "just because" as an answer. If you're asked to do something, you want to know why. Status quo doesn't work for you. You like to find new ways, new ideas. I ask you to clean your room and you fight back, asking instead, How 'bout we make it really, really, really messy and then pretend we're in the "Elmo in Grouchland" movie?

You're silly. Mommy moved the couch to sweep underneath, sadly turning down your never-ending requests to go outside to play. Ten minutes later, you had the cushions piled high in towers and you were jumping, flying, from one to another.

"This is the best playground in the whole world!" you shouted.

You lift people up, never cut them down. And for this, in particular, I pray it continues, that as you get older you always remember to find the good in people and the positives in life. It's harder than it sounds. But you're so good at it.

One day you wanted so badly to go outside and I kept telling you it was raining. But that was just fine with you, "We can play with our umbrellas!"

You're so optimistic, always finding the silver lining...

You're also incredibly supportive of everyone, our little cheerleader. Mommy and Daddy spent a lot - a lot - of time focusing on Millie in the last year. Never once did you complain. Instead, you were right there, encouraging her and applauding her victories, sometimes louder than us.

You predicted several months ago that she'd be walking on her second birthday and no matter how hard I tried to explain that she might figure out how to walk while she's 2, she likely wouldn't be doing so by her actual bith date. You insisted I was wrong.

And she proved you right, learning to walk a week beforehand.


You just smiled, "I always knew."

Maybe you did. It wouldn't surprise me. You and Millie seem to have your own, unspoken language. You two sign back and forth, sometimes real signs, sometimes just pretend made-up ones and you both laugh hysterically, sharing private jokes.

I suggested once that maybe we - just you and I - should have a special Mommy and Lola day.

But you got sad, "Millie would miss us."



You're a great big sister, Lola. The absolute best.

But even better, you're a wonderful girl.

An incredible person.

Five years ago, you made me Mommy and brought into out lives countless laughs, tickles, hugs and kisses.


But you more than anything, you brought love.

Huge, incomprehensible, limitless love.


Happy birthday Princess.

Love,
Mommy :)

Monday, July 8, 2013

smart

Millie loves to take her shoes off. And her socks.

She's like me in that one little way: She hates things on her feet.

One day last week, on the way to day care, I heard the unmistakable sound of disconnecting Velcro.

I turned around quickly, wagged my little finger at Millie and said, nicely, "No, no, no."

She grinned. Then did it again.

And a game was born.

The next day, again on the way to day care, I heard her beginning to un-Velcro her shoes. Another finger wag from me prompted a mischievous grin from her.

When I heard it a second time, I turned around and saw her wagging her finger at me, mouthing the sounds, No, no, no, no.

She was smiling so broadly.

She's smart.

So smart...

This past weekend, Ray was trying to get a little one-on-one time with Lola, which is incredibly difficult for him because Millie LOVES her daddy and rarely leaves his side. (She cries whenever he leaves a room; we believe this is because of his week-long absences this summer for work.)

Anyhow, Ray and Lola were trying to do a puzzle. Millie began ambling her way toward them so I tried to intercept, trying to get her interested in spending time with me, "Millie, come see Mommy. Should we play catch with a ball? Mommy go get a ball?"

Before I could actually go to get one, she turned her back on me, walked deliberately toward the fireplace, where we keep all of Mustang's puppy toys and grabbed a doggie ball.

She brought it over to me, grinning so very widely.

And yes, it was quite slobbered on and I would have much preferred to go get a princess ball or something.

But she was so proud of herself.

So I sat down, about three feet from her and gently rolled the gross little ball toward her.

... and the silly puppy came out of nowhere and snatched it right up, just before Millie was about to grab it.

Sad, right?

Fortunately, that prompted a game of its own: Chase the Puppy Dog.

It all worked out anyway.

***

I should acknowledge at this point that, yes, we did have a few appointments two weeks ago while we were visiting the Cities.

Both went pretty well. Millie is doing great and everyone seemed noticeably pleased to see her walking and signing.

We received a lot of information, much of which we're still digesting. Science was never my forte.

There weren't any super-involved tests done, but they did draw blood, which I had not been expecting. No calls on it yet, so I'm assuming that means it all came back normal. But I'll probably call later this week to follow-up on it all.

We return in September for a check-in again with the neurologist and to re-do an ultrasound to check on her kidney. A previous ultrasound showed a not-yet-concerning abnormality that we need to keep an eye on, so that's the plan for that.

Overall, again, we're so pleased with how Millie is doing.

This past Fourth weekend, she was even talking, so clearly. She was saying "Hi Daddy" (her favorite, most clear two-word pairing), "hi kitty" (second), and some single words as well, such as hi, yay (a new word!) and mama.

One of the skills we're supposed to work on is to continue to praise her signing skills and yet also continue to encourage her to verbalize more. So new words, improved, more frequent talking, is great.

This should be an interesting week, to see how far she is coming along.

On Wednesday, she and I meet with a school district speech therapist she hasn't seen since March, I believe, before she was signing regularly.

And, on Thursday, we go for her regular therapy appointments at the hospital. But she hasn't been there in three weeks due to schedules, etc., so they haven't even seen her walking steadily yet.

She's doing so well.


- Bethany :)