Saturday, March 30, 2013

meet Mustang!


So ... we bought a dog!

Or, rather, a puppy.

It all started yesterday, when we went out after work to look at a male puppy.

Everyone had warned me, "If you're bringing the kids, you're buying a dog tonight."

"No way," I protested. "We have plans both Friday night and all day Saturday. We can't get a dog."

And, like usual, I was wrong.

We all fell in love with Mustang.

And we brought him home immediately.


Ray and I stumbled on Mustang, a 12-week-old miniature Dachshund, online while just looking at a few potential doggy options. Really, we weren't thinking about a canine companion until at least mid-summer, for the girls' birthdays.

But then we saw and read about Mustang. And, since our college mascot was a Mustang - and both Ray and I were student-athletes at that university - we took it as a sign.

We just had to meet him.

Really, Mustang is fitting in quite well.

So far, just over 27 hours into this new relationship, he is bonding most of all with our older daughter.

Lola carries him around, chases him, lets him chase her. She cries when she has to go to bed without him and worries about him when she isn't there to watch him. She gives him food and water, helps us take him out and gives him all sorts of toys to play with and blankets to sleep under.

They are best buds.

"I want to keep him forever and ever and ever and ever," she says, every few hours, to just make sure we aren't taking him away. "Lucy can be Millie's kitty and the puppy - what's his name again? - he's my puppy, no one else's."

Yeah, we're still working on sharing, on the concept of a family pet...

Millie is just a wee bit less sold, I'll be honest.

She is quite interested in Mustangs and intrigued. But her face is at the perfect height for puppy kisses and we're still trying to teach Mustang about personal space and all of that. But we're always right there to separate them. It's just going to take some time.

Lucy, the cat, is even less excited. But the puppy likes her, the cat is just adjusting a little.

We all are.

But so far Mustang has been a terrific dog, a great addition. He is sweet, cuddly and happy. He rarely barks and hasn't snipped or anything yet. He cries only when left alone.

He's fitting in very well, learning his place around the girls and us. He seems quite happy here.

We hope so anyway. We know we're happy to have him.

Welcome home, Mustang.

- Bethany :)

Sunday, March 24, 2013

Turning a corner...

Wow. It was an incredibly exhausting - and rewarding - three days.

In short, it was all good news. Millie is making great progress and everyone is pleased with where she is at and where she is headed.

After I ran the 5K Saturday morning, we drove to the Cities to spend time with family before all of Millie's testing got underway Monday.

But come Monday morning, it was time for us to begin heading to St. Paul.


Very, very slowly.

Thanks to a "snowstorm" (maybe 3 inches of snow?), we were reminded, yet again, why we love living in Bemidji. It took us 27 minutes to go 3.2 miles.

Once at the hospital, we got Millie all registered and admitted. Her room was much more spacious and comfortable than I assumed it would be. That was a nice, welcome surprise.

But shortly thereafter, it was time to get things moving. We took her to another room and Ray and I had to hold her down as medical personnel attached the EEG leads to her head.

It is really interesting to learn your strengths as a parent as you go through some of this stuff.

Ray, for example, doesn’t handle these kind of situations so great - having to hold Millie completely still, fighting to keep her immobile, listening to her wail and reach for you to comfort her.

Yet, that stuff doesn't bother me much at all.

But sitting in the one hospital room for 48 hours, not being able to go anywhere or do anything? That killed me.

Whereas Ray handled that part like a champ.

So I guess we complement each other.

Anyhow, getting the EEG leads attached was the hardest part of the week. But it was over in about 45 minutes. To ensure that they stayed in place, they wrapped Millie’s head in gauze and taped it down. She also got her own special backpack to carry with her for the next couple of days to hold all of the necessary equipment.

Once that was all done, she was happy-ish again. 

Later that Monday, we had our initial consultation with the geneticist, who talked us through Millie's trisomy diagnosis. She also outlined the different scenarios that could have led to her obtaining it. Honestly, I didn't understand much of this at all. All I got out of it was that further testing was needed, and not on Amelia. So Ray and I had our own blood drawn for analysis.
Because of Millie's chromosomal abnormality, the geneticist also ordered an ultrasound of her bladder and kidneys. And a heart echo. Just to be safe.

So, Monday afternoon, Millie had an ultrasound done on her kidneys and bladder.

All came out just fine.

Ray stayed with Millie Monday night. I guess her Monday afternoon nap wasn’t the best idea; she refused to sleep that whole night.

(He sent me this picture about 10 p.m. while complaining that our child would not go to bed.)

I arrived at the hospital bright and early Tuesday, and after hanging with Millie for about 15 minutes, suggested that Ray try to get her to rest for a bit.

And they did. For about 30 minutes.

So sweet.

A little while later, she then had her swallow study.

Overall, the swallow study was much improved. We can again allow her to have liquids - yay! - but we will continue to monitor her and see if she struggles in the future.

She still was not chewing so we will continue to work in therapies to improve her eating abilities.

But she is coming along and that is wonderful.

On Wednesday, she was disconnected from the EEG after about 48 hours of monitoring.

Free at last (of the EEG leads, not quite time to go home...)!

This was the test I was most unsure about: What would it find? Lots? Nothing?

More than anything, I was just hoping (?!) Millie would have one of her staring/blank episodes so they could catch it on both the EEG and video.

And, sure enough, she did.

In a review of the test, it was determined to not be a seizure, so that's wonderful.

Overall, the EEG showed no seizure activity.

While that doesn’t rule out that she may be having them - just not during the 48 hours that they had her under monitoring - that was great to hear.

She still has had two confirmed seizures, so she has been diagnosed with epilepsy secondary to her chromosomal abnormality. She will remain on her anti-seizure meds. We assume those are working and fighting off more frequent seizures.

After that was complete, it was time for the heart echo.

I was a bit nervous about this one because she had to stay still for about an hour as they did an ultrasound of sorts on her chest. We had to practically hold her down for the renal ultrasound, so I didn't imagine this would go that well.

But the EEG leads were gone and Elmo was on TV.

Millie was as happy - and still - as could be.

The trip ended with the MRI.

As we waited for things to get going, Millie found some familiar toys to keep her entertained.

This was Millie Wednesday:

Millie getting ready for her first MRI, last September:

The MRI went just fine. She woke up groggy but tolerated the sedation well.

Even better, the MRI showed improved brain development (or, for those interested in the technical wording, increased myelination of the white matter) from the MRI that was done in September.

And that is awesome news.

We are extremely happy.
- Bethany :) 

P.S. Here is a bonus image, which didn't quite fit in with the narrative above.

My mom and I took Millie for a wagon ride throughout the hospital Tuesday evening, before getting her ready for bed.

She was so happy to take a little break from her room.

Such a sweetheart.

Saturday, March 16, 2013


That's me, at the tail end of my first 5K.

We got a few inches' worth of fresh snow last night and the temperatures were hovering right around 5 degrees. So I was more than a little nervous as I waited at the start, wondering if I dressed appropriately or if I might lose my footing.

But I did it. And I stayed vertical the whole time!

I had just one goal: to run the whole thing without stopping.

I did that.

A second dream kind of goal was to break 30 minutes.

I didn't do that.

I finished, unofficially, in 30:16.


I guess it gives me something to aim for next time (next time?).
- Bethany :)

Friday, March 15, 2013

Disney Diary, Day 6

(An ongoing recap of our nine-day trip to Disney World.)

So ... are you getting sick of these yet?  * smile *

I'm actually loving them. I get to relive my warm-weathered vacation, day by day, as I look out the window at the mounds of snow and ice.

Anyhow, Day 6 was Thursday and we realized that morning just how fast the trip was going. Soon, we knew, we would be back on the airplane, flying home to the tundra of Minnesota.

So, we quickly put those thoughts out of our mind and took a day to ourselves, heading to Downtown Disney that morning for some shopping (one of my all-time favorite activities).

We checked out some impressive Lego creations...

And Lola said hello to a few favorite princesses...

We tried to grab lunch at Planet Hollywood (Ray really wanted a burger) but it was booked for a private event.

So we instead checked out the boat from "Forrest Gump."

We ended up eating at what would become one of our favorite Disney eateries: Pollo Campero/Bodie's All American. It was kind of a healthy "crunchy" kind of place, seemed organic and vegetarian-ish, which isn't exactly our thing. But it didn't matter at all. Great food.

After lunch, we shopped quite a bit more. I got a new dress and T-shirt (both with fun leather details) while the girls got some toys.

It was a good time.

But it was getting really hot. And Ray was kind of hitting the wall.

Se we went back to the resort. Lola and I left Ray and Millie in the room for a much-needed rest as she and I hit the pool.

We actually didn't spend much time in the pool at all.

She fell in love with the splash pad (which, if you know Lola at all, is rather noteworthy because she's terrified of having water on her face).

But not that day.

She was running, jumping and soaring through those sprinklers, laughing and squealing the whole time.

Afterward, we went back to the hotel, but Ray and Millie were still sound asleep. So Lola and I played a bit out around the resort.

(Can you see her, hiding under the tusk on the left? 
The "elephant graveyard" was a lot of fun.)

We stayed at the Art of Animation in their standard Little Mermaid rooms. As a property, we loved the resort. It was bright, fun and incredibly kid-friendly.

Each section had a theme - our rooms were obviously Little Mermaid-inspired.

There also were the Lion King suites (which is what I'd fight for, personally, if we were to go back).

Cars suites.

And Nemo suites. Each section had its own pool, but the biggest pool, in the center of the resort, was Nemo-inspired (which is why you see clown fish in the background of some of the splash pad pictures).

The whole resort was great.

My biggest complaint - and this is a reach because I, myself, actually liked the exercise, but Ray was occasionally irritated and I heard one woman demanding a new room because she couldn't walk that far - the Little Mermaid rooms are a long walk from Animation Hall (the main building). And that's where the food/restaurant, gift shop, game room, etc., all are located. 

We heard one couple say they thought it was three-fourths a mile each way from the Little Mermaid rooms (though I think, personally, it couldn't have been much more than half a mile).

But with kids - and the frequency in which you're getting breakfast, catching buses, eating, etc., it does get to be a long ways off. Add in a stroller (or in our case, a double jogging stroller) and it can get a bit old.

Anyhow, once Ray and Millie did wake up, we decided to take an evening trip to Epcot.

And it was so worth it.

 (Notice how we now have a group photo? Yeah, I finally got around to paying the 
$150-plus for the Disney PhotoPass CD last week. Expensive, yes, but in my opinion, 
quite worth it. We got access to about 300 images taken for us by numerous Disney 
photographers, including our "full family" group shots at each Disney World park.)

Millie had a fabulous time that night. We were hanging out waiting for the "Turtle Talk with Crush" show as she noticed the actual, real fish.

She was entranced.

And finally, after six days at Disney World, we got to see Mickey and Minnie.

Lola actually thanked Mickey.

"Thank you for letting us come play at Disney World," she said, shyly.

Too sweet.

Minnie was a big hit too.

Especially for Millie. She loved seeing the characters from afar, but got timid when they up close. But when it came time to see Minnie, she actually smiled.

For Lola, meeting Pluto was her dream come true.

(And I didn't even know she was a huge Pluto fan.)

Just look at how she danced in excitement!

It really was (another) wonderful day.

- Bethany :)

Wednesday, March 13, 2013

preparing for tests...

We got a thick packet of papers in the mail a couple of weeks ago, from the hospital that will be doing Millie's tests next week.

Part of it was a large, colorful booklet, designed to show kids what exactly they will go through in preparation for and during a video EEG, to show them it isn't anything too scary and nothing painful.

I was going through the whole hospital packet yesterday, making sure we had taken care of all of the required paperwork, when Lola spotted the bright orange book and asked to see it.

I agreed, showing her page by page what would happen to Amelia.

Lola was concerned, wondering if all those electrodes would hurt Millie - "Will they stick her in the head like a shot?" - or if Millie would try to pull them out.

We talked frankly, positively, and she accepted that Millie would be OK, that it was all for the best and none of it should hurt at all, just may be a bit annoying.

But as she put the book down and turned to play with something else, Lola shot me one last worried look.

"Will I have do that, too, someday?"

"No," I assured her. "Millie's doctor just wants to see how the inside of her head works."

She smiled.

"Good. That doesn't look fun."


No, it does not.

But we do what has to be done...

- Bethany :)

Tuesday, March 12, 2013

Disney Diary, Day 5

(An ongoing recap of our nine-day trip to Disney World.)

This is when things got great.

If Day 3 was my favorite day of the vacation, Day 5 was a very, very close runner-up.

Easily, it was my favorite Millie day.

With her illness/dehydration/whatever behind her, this was the day Millie finally got into Disney.

She had a fabulous time on this day, a Wednesday.

We all did.

We went back to Animal Kingdom, which was quickly becoming one of my favorite Disney parks.

We met up with Ray's sister's family, who kindly suggested that we check out one of the shows, "Finding Nemo the Musical."

She thought the kids would really like it.

She was right.

It was amazing.

Now keep in mind we are not a theater family so I'm sure other, more cultured families have different levels of expectations.

But, for us, it was superb.

And the girls loved it.

We then wandered around the park some more, visiting animals and touring DinoLand, which had this one spinny roller-coaster/ride thing that the older kids loved.

Lola wasn't tall enough, though she tried repeatedly to convince us - and cast members - that she met the height requirements (but, no, she didn't).

So she settled for a group shot later on.

Since we had so much fun at Nemo, we decided to check out another show: the 3-D "It's Tough to be a Bug" show.


It was super cute.

And I loved it. The whole five minutes I actually got to see anyway.

The show, in 3D, is inventive, funny and quite well done.

But it scared the crap out of Lola.

So she and I had to leave early.

But anyone with kids that aren't weenie heads would probably really love it. Ray, who got to stay for the whole thing, thought it was fantastic.

What else did we do that day? All of us adults got to go on Expedition Everest, the new Yeti roller-coaster.

I've never been the biggest roller-coaster fan. About ten years ago, I actually went on Wild Thing at Valleyfair (and hated it the whole time; I'm just not good with the drops). But I have, usually, enjoyed Valleyfair's smaller ones, with less extreme drops, like the High Roller.

But apparently I've gotten kind of old. Everest was just not for me, though it was kind of fun to go backward. Really, overall, it was kind of enjoyable. But I didn't love it.

I felt much happier on solid ground. In the sun.

But Ray loved it.

Anyhow, the last live show we saw that day was the best, in my opinion.

"The Festival of the Lion King."

I don't know if Lola sat down at all during the show. She was swaying, pointing and dancing the entire time.

Millie, too, was captivated. She didn't take her eyes off the stage. She was bopping along, squealing and clapping.

It was awesome.

We spent that evening at Ray's sister's family's hotel. The kids swam a bit and then we all just kind of hung out in their suite, talking and laughing and eating some pizza. The older kids all played together while Millie was just happy to have a place to crawl around (while still being the center of attention of course).

It really was a great day.

- Bethany :)