Monday, December 31, 2012

bye-bye 2012

It's been a tough year.

But, we're ending it in a really good, positive place.

Millie is a riot these days. She is flying all over the house on all fours now, getting more confident at pulling herself up to standing, and is in the very, very early stages of learning to cruise.

She is consistently saying dada and mama. She sand "num" the other day, and, if you listen closely you can make out approximations for kitty, no, and Elmo.

Her favorite place in the house is atop the couch, a sectional upon which crawls from one end to the other and back. Over and over and over again.

It's beautiful to watch.

Lola, meanwhile, is slowly overcoming some fears of school and is getting more confident in herself. We've been working a lot in recent months on building her self-confidence, her self-esteem. We want her to really trust in herself.

She's still our girly-girl princess, who would rather spin around in a tutu indoors than go outside and play in the mud. She hates to have her hair washed, but she loves to laugh and to make other people laugh.

She now is making up songs, telling stories and drawing out her make-believe scenes in pictures.

Her favorite pastime is flying, as in running leaps. From the couch to the floor, from the bed to to a beanbag chair, whatever and wherever.

She is our delightful 4-year-old, working to try to understand the world around her. She questions everyone on everything, from vocabulary to astronomy to medicine (science stuff).

She is our sweetheart, a little girl who likes to pretend to be tough but really is a gentle little soul.


***

You never know what life will bring.

At this time last year I was looking forward to 2012, pondering whether we might get a dog, thinking maybe we would start with a hamster. I thought that, by now, our long-planned bathroom remodel might be complete.

I never could have predicted the last 12 months of our lives. Not a single minute of it.

And I certainly won't try to do so for 2013.

But I really hope that my biggest problem next year is deciding whether to get a hamster or a dog.

And I really, really hope we pick the hamster.

Happy New Year.
- Bethany :)

Tuesday, December 18, 2012

Life with Lola

Lola is our chatter-box. I mean, the kid can talk.

Her daycare providers once gave her a ride home, probably about a year or so ago. I can't remember why, but when they dropped him off, the husband looked positively exhausted.

"Man, your daughter can talk," he said. "For being so shy, once she gets going, there's just no stopping her."

And it's true. It might take Lola an hour or so to warm up to you, but once she's comfortable, it is nonstop chatter.

Yesterday, she (finally) completed her early childhood screening. She excelled, passing everything with flying colors. In the speech section, a passing score is 21; Lola got a 35.

"She had a lot to say," the teacher laughed.

The only question that she didn't pass was this: What is a window made of out?

Lola was thoughtful, then answered, "Wind."

Such a cutie.

She's been full of sweetness these days, probably due to the incredible amount of holiday sweets she's been eating.

Yesterday, I worked late and saw her about 7 p.m. She promptly told me that she learned to spell a new word at school that day.

"Really? What word?" I asked.

She said something that started with a B and included a lot of "errr" sounds.

"Bird?" I guessed.

"No, Mommy," she said impatiently. "Watch me."

She wrapped her arms around her and pretended to shiver, "Brrrrrrr."

She makes me giggle.

Last week, while driving back from the Twin Cities, it became the Trip That Would Not End. I mean, our usual four-hour trip took us 10 hours, thanks to the ice and snow.

Everything went wrong that day - the road conditions, flat tires, work demands. I was tense and it was quickly spreading throughout the car. It was not a good moment.

We realized at some point that we, again, needed to stop and check a tire on the trailer and Lola freaked out. She was so confused by our frustrations, my growing anxiety.

"I just don't understand it," she finally wailed, out of nowhere. "Why is everything so, so broken today?"

Ray and I burst out laughing, she was so melodramatic and yet so genuine. She was saying exactly what we both were thinking. And in that moment I finally just accepted that I wasn't going to get to work that day. And that was just going to have to be OK.

So we laughed and hugged, and then stopped for a much-needed lunch break.

Kids are great. They remind me that nothing is really quite as important as I think it is.

Happy Tuesday.
- Bethany :)

P.S. Lola has her first-ever Christmas program tomorrow morning at preschool. I'm so very excited. I hope it goes well (mainly, I just hope she goes out on the darn stage, ha ha).

Monday, December 17, 2012

on a lighter note...

Cookie time!

Saturday was Cookie Day in our household as we made a concerted effort to spend some quality with our older daughter.

Lola loved it.

And so did we.



 


Really, we had a great weekend from beginning to end.

Ray was even willing to blow off the end of the Vikings game Sunday so we could go to the mall and see Santa.


Yeah, this is the second year in the row that Mommy got to see Santa. Lola just wasn't quite ready to go alone, though she did really great. I was very proud of her. She had a conversation with Santa, about how old she is (4), whether she was a good girl (of course), and what she wants for Christmas (a new Barbie doll).

Looking back, a whole lot has changed since our picture was taken last year.



Millie has the exact same expression, but she looks much older...

Lola is no longer on the edge of leaving toddler-hood and now is very clearly a preschooler...

And me? Well, yeah, I've changed a bunch too. I finally got around to losing the post-college/post-marriage/post-babies weight that's been sticking around too long.

In fact, it was about this time last year that I debated with Ray about whether I should give in and get my wedding rings re-sized - larger - because I couldn't wear them anymore.

This weekend, I dropped my rings off to get them re-sized - smaller - because they keep falling off.
 


It's nice to feel like me again.
- Bethany :)

Thursday, December 13, 2012

Christmas magic?

It's been more than seven months since we last heard Millie truly talk.

And more than a few times, I've longed to hear her reach for me and say "mama" again.

I'm still waiting. But it might not be much longer.

Yesterday, Millie pointed at Ray and said "dada."

Today, after I left for work, she pointed the front door, and asked for "mama."

I've yet to hear either myself.

But it's happening. She's talking. Again.

And I can't wait to hear it.
- Bethany :)

Tuesday, December 11, 2012

me and God

I'm a Christian, though I do not wear it on my sleeve.

I don't go around quoting Bible verses or talking daily about religion or my relationship with God. To me, that part of my life is private, though I am breaking that tradition today.

My faith is a huge part of who I am, particularly these days.

As we've progressed through these last seven months, learning more and more about what is "wrong" with Millie and the difficulties she has in life, my faith has played a pivotal role in how I've coped.

Generally, I don't question how God could allow her to have these struggles. Rather, I feel she is quite blessed, as I know her condition easily could have been much more debilitating or life-threatening.

When I pray, I pray that He gives her the strength, desire and fortitude to continue fighting, to continue making progress.

I don't pray for Him to heal her, because there is nothing to heal; this is who she is. Millie's future is up to her, to us, to keep encouraging her to conquer whatever obstacles may lay before her.

I believe Millie was not cursed with some rare condition, but that she was blessed with it. I feel like she is a blessing, that diversity of any kind in this world is a good thing. How boring would life be if we all looked the same, acted the same and experienced the same things?

Being Millie's mom, her caregiver, her advocate, has taught me so much, about life, about myself. I feel chosen as her mother. When I pray, I thank God. I thank Him for giving Millie to us, for trusting her into our hands, in our hearts.

I didn't intend this to be preachy, so forgive me if it has become so. It's just that, as we get closer to Christmas, I've been thinking more and more about miracles, about gifts, about life.

I believe in miracles.

But I don't pray for one for Millie's sake.

She is here, with us, doing well, learning more about life each day.

And that's worth celebrating.
- Bethany :)

Tuesday, December 4, 2012

Turning the corner?


Something huge happened yesterday.

It's hard to describe, in words.

Ray and I were debating putting Millie to bed. She had just had her dinner and was getting a little cranky. I sat down on the lounge end of the couch, Ray was lying in the center.

I set Millie in between us. She loves being on the couch, always has. I think it makes her feel like a big girl.

She had throw pillows on either side of her. Now Millie has never climbed over anything before; she hasn't quite figured out how to lift her legs/knees high enough.

But this time, about 6:30 p.m., she began moving around. And figuring things out.

She only had about a two-foot-wide space. But she climbed on top of pillows and began pulling herself to kneeling against the couch cushions.

Ray and I shared a smile, happy to see her moving a bit.

And then, she took off.

Millie somehow figured out she could fling her body around.

So she would get up on her knees, stretch and high as she could and throw herself at us, at the couch cushions, at anything.

It was flying Millie.

And she loved it.

She was laughing and clapping and sweating and shrieking.

She has always loved to fall backward. So she got to sitting and I would help her stand and then drop her backward and she would fall back into a pillow and giggle like mad.

More than once I thought about getting the camera.

But I didn't want it to end.

She was throwing herself into my lap; into my arms; into Ray's face, nearly gouging out an eye or two; into the couch cushions.

Lola, watching a Shrek movie from her perch on the ottoman, joined in a few times. But it was Millie's show and the 4-year-old was more interested in Fiona.

And that was OK.

We played hard with Millie until 7:30 p.m., long past her bedtime. And I tried to cuddle with her, slow things down a bit, but she kept lunging for the couch.

So we let her go for another 5-10 minutes.

And then, with her little brown curls stuck to her sweaty scalp, she looked up at me with big, beautiful green eyes, laid down and rested her head on a pillow.

Cuddles.

She barely whimpered when Ray put her to bed.

It was only later, when the house was quiet, that I regretted not taking even a quick video.

Or even one photo.

So I drew one instead.

:)


Seriously, though, it was an amazing experience for us. It was the first time we saw more "typical" toddler behavior from Millie.

Ray and I exchanged an ironically worried look last night, knowing that we are completely unprepared for having a "real" toddler in the house...

UPDATE: Ray is home with the girls today. I'm working (blogging on lunch break). I called Ray a bit ago to ask, a little nervously, "Is Millie acting like last night? Or is she back to (so-called) normal?"

We were very tentatively excited about what happened last night, thinking that maybe she turned a corner. But, then, always cautious, Ray noted that her meds create periods of great downs and great ups. Perhaps it was just an up?

The verdict? Too soon to say. BUT, he happily told me she spent the morning pulling herself to standing and crawling all over the house, including the couch.And, yes, she was flinging herself at anything cushion-y.

"She has gotten into everything today," Ray said, quite proud, and yet, yes, a little overwhelmed.

Knocking on a whole lot of wood today...

But it seems Christmas just might have come a bit early here...

- Bethany :)

Monday, December 3, 2012

Sunday celebrations

Millie pulled herself up to standing this weekend!

(Granted, it was probably because we were being less-than-stellar parents at the time, but, hey, it worked!)

Ray, Lola and I were sitting on the couch, all taking turns with our new Wii U system.

The Wii U has this GamePad controller - with its own tablet screen - so Ray, Lola and I were passing it around, drawing a path on it to dictate the future movements of a Mario character.

Anyhow, Millie must have thought it looked an awful lot like the iPad that she gets to play with when her school district therapist comes to the house.

She came straight for us, abandoning her pile of beloved Elmo toys, and grabbed hold of the couch cushion. She pulled herself to kneeling and then, like usual, kind of bobbed upward a few times, making you wonder whether she just might try it...

And then, all of a sudden, I wasn't just seeing the top of Millie's head poking up at me but her entire, grinning face.

She was standing!

And reaching ever so desperately for the blasted GamePad.

By day's end, she pulled herself to standing five times.

And you know what? Each time was worth the cost of the Wii U.

Times a thousand.

- Bethany :)

Wednesday, November 28, 2012

'Tis the season



We put up the Christmas tree this past weekend, fulfilling an annual goal of getting the house decorated for the holidays in the days immediately following Thanksgiving.


We actually decorated the house Saturday, setting out the unbreakable decor and knick-knacks  I deemed safe to be around a mobile Millie this year.

Then, on Sunday, to Lola's great delight, we decorated the tree.




Now Millie had not taken any interest in any of the new additions to the living room, including the Playskool nativity and the piles of Christmas-themed stuffed animals.

She didn't even glance at the Christmas tree.

But as soon as Ray plugged in those Christmas lights, there was no stopping her.

She beelined for them.

Over and over and over again.

Ray strung one row of lights while I moved Millie to the opposite side of the living room, surrounded by her favorite toys.

But by the time Ray strung a second line of lights, she was at his heels, reaching up for the twinkling colored bulbs.

Over and over and over again.

It was heavenly. Just watching her move, that far, that fast.

It's what we've been waiting for.

And it's what I needed.

I'm in an admitted holiday funk. I'm trying to break out of it, but also am accepting that I just might not get to that crazy excited place this year.

Still, I'm working on it.

Because this little girl is ecstatic about the holidays.



And this one, I think, would be just as excited if she had any idea what was going on.




This was the second year that we cut down our own Christmas tree. I usually want to get the tree up on the Friday right after Thanksgiving, but our car - in celebration of its first anniversary with us - was in the shop.

Instead, we woke up Saturday ready to go. And it was 12 degrees outside.

So we waited a little longer, until the temperature reached 20.

Ray and I debated holding off a week in hopes of warmer weather.

Ultimately, we grudingly agreed that it was time. So we layered our clothes, bundled up the girls and set out to prove just how Bemidji-an we can (pretend to) be.



 




Then we hustled our butts home, cranked the heat and turned on the fireplace.

It was a pretty wonderful weekend.
- Bethany :)

Thursday, November 22, 2012

thankful

I work today, Thanksgiving Day.

I'm not down or whining about that fact at all - if anything, my job, or more accurately my boss, is one of the many, many things I am thankful for today.

Medical stuff comes up for all of us - we get sick, our kids get sick, etc. - and employers are used to having to adjust to that. But I've really taken it to a whole new level this year. Between Millie's therapies, tests, evaluations and appointments, I've taken off a lot of time this year. Sometimes with barely a day's notice.

Through it all, my boss has been understanding and supportive.

I've said it before, I know, but it bears repeating: A reporter doesn't ask for Election Day off, especially not one in a presidential and redistricting year.

I'm fortunate to have the support I need, in so many facets.

Family, friends, all of those who have offered encouragement and help throughout the past six months. It's all appreciated, so very much.

I'm thankful for the medical community, from receptionists to technicians to therapists to doctors to specialists. You might not be able to "cure" our baby girl, but we believe everyone is working to help her reach her highest potentials. And that's fantastic. We cherish all their work.

And, this year more than any other, I'm thankful for my Ray.

We're not an overly sugary, lovey-dovey kind of couple. If found at home, we're more apt to be whipping (harmless) plastic balls at one other, trying to smack each other in the face, than we are to be whispering sweet nothings in each other's ears. You won't find us dancing in the moonlight, but we might be racing down the hallway, trying to shove one another into the wall to steal their first-in-line spot for the bathroom sink.

But if I've learned anything in the past six months or so, it's that Ray and I compliment each other. (Not in the, "Wow, you are the smartest person I know," kind of way, but in the yin-yang kind of way.)

I'm a big ol' ball of stress. I could pop at any point. I'm wound up tight with worry and anxiety on a regular day; going through what we're experiencing with Millie has compounded that tenfold.

Which means I have a short fuse these days. And no patience.

So when it comes to feeding Millie or battling Lola over clothing every morning (seriously, she can't wear frilly party dresses to school every day), Ray is always in the background, ready to step in.

He can hear it in my voice, that strangled gasp of frustration when Millie turns her head from her milk for the 14th time in two minutes. or when Lola refuses yet another pair of jeans or sweatpants, reaching instead for that sparkly, twirly summer dress.

Ray is patiently persistent. He doesn't mind if it takes 75 minutes to feed a 16-month-old. He has a special knack for reasoning with Lola in ways that I can't.

I came home late Monday night after. Ray had been home all day with Millie, who still is adjusting to her medications, and Lola, who was battling yet another stomach bug. He looked tired and worn out but also quite proud of himself.

I entered the house and found the kitchen floors all scrubbed, sparkly and shiny.

I was impressed.

Lola was still awake, so I went into her bedroom to give her a kiss goodnight.

"Mommy, do you know what I did?" she said weakly.

No...

"I threw up all over the floor."

Ah. The scrubbed kitchen. That explained that.

Moments later, I walked into the living room, where towels were draped over our couch cushions.

I shot Ray a puzzled look.

"Yeah, she threw up all over the couch too," he shrugged. As I went to check if anything had stained, he stopped me, "I scrubbed it all out. It's just drying now. Don't worry about it."

And I don't.

I know the kids are in good hands when I'm not there.

And, for that, I'm thankful.

Happy Thanksgiving.
- Bethany :)

Wednesday, November 21, 2012

Nightmares

Lola  already was in bed when I got home last night. I found her sitting up in bed, crying silently and shaking.

"I don't wanna' go to sleep," she stammered between tears, holding her blanket to her face.

She's been having some rough nightmares for the past couple of weeks.

Coincidence?

Possibly. But I'm not so sure.

We tell her all the time that she's safe, that Millie's fine, that no one is sick or needs to go to the hospital.

But I wonder what she's managed to pick up recently, all the talk about seizures, EEGs, genetics, blood, etc.

We try not to talk about that stuff in front of the kids, particularly Lola, who misses nothing. But I'm sure we've fallen short of that goal a couple dozen times.

Lola also has been sick. She had (another) stomach bug kind of thing all day Monday and was on the mend yesterday. She's back at school today.

Hopefully, her not feeling well has been making bad dreams worse.

I haven't been home much this week, working longer hours and going to my Millie speech class, so our bedtime routines are a bit out of whack too.

I'm hoping a few "family days" this long weekend can make things easier for us all.
- Bethany :)

Monday, November 19, 2012

ups and downs

"You might have to just wait until she's 2 to find out what she'll be like at 2 and wait until she's 5 to see what she's like at age 5."

Our pediatrician said this to me in June, back when I took Millie in for her 12-month checkup. We were just about to go in for her genetic blood-draw and he was trying to prepare me for the possibility that we wouldn't get a diagnosis for Millie.

And while we did get a diagnosis (trisomy 16q), his words seem to carry more weight for us these days.

We don't know what her future will be. No one does.

In some ways, not knowing is hard. It's impossible to plan for the future if the whole thing is  unknown. Will Millie start talking? Will she ever live on her own? Will she completely flourish in therapies? Five years from now, she could be completely fine. Is that likely?

But in many ways, not knowing is OK with us. No one knows what she won't be able to do, so her whole support team - us parents, her therapists, etc. - works under the opinion that she will be able to do it all, with help. There are no known limitations, so we don't have a dozen people giving us a list of what she won't be able to do.

And that's a good thing.

I won't lie and say that this is easy. The whole thing is hard: watching her resist liquids, struggling to adjust to her new medications, whimpering every time we arrive at the hospital for her therapies.

But it's helping. We know that. Millie has officially "graduated" one physical therapy session a week! She is going from physical therapy twice a week to just once. She is making great strides there.

We just haven't seen that same progress yet with speech. And feeding.

Granted, she's been through a lot more PT than the others - today marked her 40th physical therapy session - but, still, we would like to see some progress in those areas. If not verbal speech, some kind of communication

We have faith that she will get there.

We're optimistic that she'll show similar progross.

But some days it's hard.

I went to our local pharmacy late last week. It was, I think, my eighth visit there in eight days.

The technician greeted me with a sympathetic smile, "Amelia just isn't having a good week, is she?"

Then she saw the prescriptions - twice-a-day anti-seizure meds and a packet of emergency seizure-control meds - and I could see it in her eyes, as she began to understand: This isn't a kid with a bad week; it's a kid who's got a few tough battles before her.

About that time, Millie caught my eye from her seat in the shopping cart, looked up at me and grinned.

I bent down to kiss the top of her nose as she arched her head backward, throwing it forward to collide with my forehead.

BONK.

She laughed hysterically. It's her favorite game these days.

Yeah, she's got some struggles.

But, man, that kid loves life.
- Bethany :)

Friday, November 16, 2012

questions and answers

We got Amelia's diagnosis yesterday, though it really doesn't tell us much at all.

She basically received, from either Ray or myself, an extra segment of one chromosome which went and banded with another chromosome. It's called a translocation.

While we know this is what is likely causing her struggles, we do not know what it means in terms of her future life. It could have mild effects that she can overcome with therapies and practice or it could be more serious. 
 
There are only a handful of documented cases very similar to hers and our neurologist is working to get a hold of them. But, even once she does, they won't really tell us too much more since it is such a small sample set.

We will continue with her therapies and will be seeing the neurologist fairly regularly for the next couple of years. We go back in January for a checkup. She will likely redo the MRI (and swallow study) in early spring.

Meanwhile, Ray and I (and probably Lola) have been referred to a geneticist to figure out which of us passed along the extra genetic material. 

Millie's EEG was normal, which is great. But the neurologist wants us to still put her on anti-seizure meds for the next two years. With her abnormal MRI and seizure, she still recommends treatment.

Overall, we're doing OK with the news. We now basically know why she has the struggles she does, but not what that means for her future.

I think, honestly, Ray and I are taking it as good news. No one is telling us that she can't or won't be able to do certain things five, 10, 15 years from now. 
 
We continue to celebrate her physical improvements and pray that her feeding and speech struggle show improvement as well in the coming weeks and months.
 
***
 
It's my blog and I'll brag if I want to.
 
It's rare in life when I feel like a super mommy. I doubt myself and my actions much more often than I feel confident in them.

The goal was to get Millie to sleep during her EEG.

I didn't know if this was really possible. I mean, she had electrodes glued all over her head and wires sticking out everywhere.




 

I woke her up early, so I knew she was super exhausted by the time of the test, but she kept trying to putt everything off her head and was fighting against sleep. The technician finally said that if she didn't sleep in the next 7-10 minutes, we would move on...

With the lights turned off, I laid down next to her, covered her with her favorite blanket, didn't touch her (rubbing her back only made her jumpier) and just said "Shhh" over and over and over and over again.

And, amazingly, she fell asleep. They got about 15-20 minutes of sleep-time activity recorded.

Super Mommy.
 
Of course, when I told Ray a half-hour later that I was so proud that I got her to sleep, he just kind of blinked at me funny, "Well, she was super tired. I figured she would fall asleep."
 
Eye roll.

Trust me, it was much harder than it sounds.
  
- Bethany ;)

Wednesday, November 14, 2012

33

Today is my birthday. I am 33 years old.

I woke up to countless emails, texts and Facebook messages from family and friends wishing me a happy birthday, telling me that everyone is thinking of us and praying for good news in the days to come. Each message is appreciated.

I know what my birthday wish is this year. And each year to come.

If at all possible, I'd like to cash out all my future birthday wishes now, roll them up into a big ol' ball and send them on up:  

Please let us get good news tomorrow.

Things are happening quickly here. We leave early this evening for the Cities for an all-important Thursday. Millie was undergo an EEG and then we will meet with the neurologist.

We will get a diagnosis.

We already know the genetic testing revealed something.

We just don't know what yet.

We pray it is something minor, something that can be managed or treated.

We pray.
- Bethany

Tuesday, November 13, 2012

our no good, terrible day...

Millie had a seizure yesterday.

We're hoping for more information today.

Thanks to all for the prayers, thoughts, emails, etc., as we move forward.
- Bethany

Monday, November 12, 2012

Failures and successes

Wow. It has been a very long, trying weekend.

Ray is amazing. I know I don't say that enough. But he really was fantastic yesterday.

I had a not-so-mini meltdown yesterday morning. I just wasn't handling it well, having to listen to Millie cry in hunger. She was so hungry...

I should back up.

We began thickening Millie's milk Saturday. I had the first go at it, as Saturday was Ray's day to sleep in. I made it too thick, pudding thick probably, and tried spoon-feeding her. She took about 2-3 spoonfuls and then was having no part of it.

Ray woke up, I went to work.

He emailed or texted to say a few hours later she was drinking some of it, but it was out of the bottle. Which, even though I know he made the nipple hole bigger, I didn't think that sounded right. It shouldn't be able to come out of the bottle.

Sure enough, it wasn't quite thick enough - close, but not quite.

So, Saturday evening and Sunday, we played around with the thickness until we figured out the right combinations, etc. I think we've nailed it. But that doesn't mean it is making feeds any easier.

Millie wants her bottle. And she just can't have it that way. We tried a few sippys with no luck and tried the cold-medicine-measuring-cup thing. We tried spoons.

Sunday morning, while listening to Millie wail because she was hungry, I all but gave up. I left the room, I just couldn't take it.

I came back a few minutes later and Ray was feeding her some pureeds. She seemed better, so we focused, again, on figuring out what to do about the milk.

Finally, we tried the syringe. Like giving an infant Tylenol, I fed my 16-month-old honey-thickened whole milk by syringe. It was a very slow process, but a successful one. Mostly.

She took about 3-4 ounces that way. She was pretty hungry. We alternated pureeds by spoon with milk by syringe. She wasn't happy - and was still letting us know so - but she at least ate something.

Sunday evening, she was a little more willing to do the same thing. Pureeds by spoon, milk by syringe. Maybe 3 ounces of milk.

I was worried last night she would wake up screaming at 2 a.m. but she slept through the night, until 6 a.m. when I had to wake her up this morning. Boo. Monday morning therapy starts at 7 a.m. but the hospital is less than a 1 mile from my house. Before, we would  wake up at 6:40, I'd give her a bottle while I brush teeth, dress and get ready. We were out the door by 6:50 a.m. and at the hospital with 5 minutes to spare.

Now, though, feeding takes about 45 minutes. So I was up, unhappily, at 5:30 a.m. this morning, to dress myself, get myself ready and then wake up Millie at 6 a.m. for feeding. It's not the nicest schedule, especially since Sunday night is the best night of TV for us. So we always stay up too late...

But, I must say, as Millie and I interacted and played during feeding, it was nice to have some one-on-one time with her on a Monday morning, heading into what is sure to be a fairly long work week.

This morning, too, she actually seemed to want the milk. Still by syringe, and still alternating with pureeds, but she seemed happy about it. I didn't feel like I was force-feeding her.

I consider that a win.

I'm sitting here now in the waiting room, while Millie is in therapy. Her physical therapist this morning was listening to me recap the (long) weekend and our early morning and told me she thinks Millie is ready to go down from two physical therapy sessions a week to one.

Amazing. So proud of her. This is a huge win.

Millie is doing so incredibly well movement-wise.  She has come a very long way in just a few months.

***

In awesome Lola news, we no longer need pullups! She has been daytime potty-trained for a very long time, but Lola has finally moved out of them for nighttime too!

What a big girl!

She's been begging me for weeks to let her sleep with panties. But I knew she was still going 2-for-3 or so at nighttime in pullups, so I made her a deal a few weeks ago: Stay dry in your pullup five nights in a row and we'll let you try panties at bedtime.

So she did, stayed dry five nights in a row immediately. Seriously, that kid is so stubborn!

Of course, her first panties-night was on election night. She had an accident. Ray talked to her that morning and said it was no big deal, that she should try just one more night. I talked to her, too, later, and told her we were so proud of her for trying and she could try again if she wanted to.

She told us she wanted to sleep in panties. She said she wanted to try again.

The next morning, she was dry. And she has stayed dry ever since. Five nights running...

So very, very proud of her. And I love to see just how proud she is of herself.

So, yeah, this weekend, this week, has been a combination of failures and successes.

But it seems - knock on wood - that that successes are out-numbering the failures.

We'll take it.
- Bethany :)

Saturday, November 10, 2012

On a lighter note...



We got about 2-3 inches of snow on the last weekend of October.

Lola was giddy and couldn't wait to get outside.



Millie, though, was less then impressed.


After Millie went down for her nap, Lola begged to go sledding. It was one of those early-winter days with warm temperatures and little wind, so I was much more agreeable to going outside than I will be in February.

She had a blast. We went down so many times that the little snow we did have was all gone, the grass torn up underneath. And, still, she wanted more.

It was a great day.


- Bethany :)

Wednesday, November 7, 2012

Another test, another head-scratcher...

Millie's swallow study yesterday revealed findings that I was completely unprepared for. Not because they're terrible - we'll make it work one way or another - but because they were really, really unexpected.

Millie doesn't eat solids. We took her in to find out if there is a structural problem preventing her from eating solids.

The result?

She is struggling with liquids.

Actually, she is struggling with fine liquids, medium liquids and big, crunchy cookies. she is aspirating, meaning the foods are going down her airway into her lungs, causing her to choke, cough and gag.

I think the tester lady talked with us about the results for about two full minutes before I finally had to interrupt and ask for clarification.

"Wait," I said, confused and perplexed. "You're saying she's aspirating on liquids?"

Like, as in milk? Which she has been drinking for all 16 months of her life? And I, her so-called mother, hasn't noticed that she's been having difficulties? Mommy fail.

As it turns out, she aspirates on liquids and thicker-yet-still-not-very-thick liquids (called nectar; which isn't really nectar, but is a consistency similar to nectar). The thickest liquid (called honey, again, because of its consistency and not taste) did not cause her any problems. Likewise, she also did not have problems with yogurt or dissolvable foods (like puffs, crackers, etc.) but she did aspirate on the larger, crunchy, textured cookie.

What does this mean?

Well, life gets a bit more complicated (again). We now have to start thickening her liquids until they are the consistency of honey, more or less.

I'm still learning a lot about all this stuff. But it sounds like there are several options. They will require more work and more time, mainly because she likely won't be able to use a bottle anymore and while we've tried to get her on a sippy cup, we just haven't had any progress. During the test, she took it all OK with the itty bitty measuring cup thing they give you when you buy cold medicine. So it will work, but it will take much, much longer to feed her.

Meanwhile, we now have specific goals for her feeding therapies. These will start again Monday. I don't know if we'll up their frequency from once a week, but I'm sure we'll have a longer-than-usual conversation that morning.

Really, other than the Mommy Guilt plaguing me at this moment, we're doing all right with it all. I'm just overwhelmed with information. And questions.

But we'll take it, again, one day at a time. And figure out what works best for her. And us.

Oh, and, no, we were not able to see the neurologist. So I still don't have the genetic/blood work results. I guess we'll save that one for another day.

But I want to end this on a more upbeat note: Millie was a rock star. They wanted her to take the barium straight in a bottle or a cup. Despite resisting it at first, she eventually just got used to it and tried whatever I gave her. She didn't cry or whimper once, during the whole test, when she was sitting upright in a special chair, surrounded by machinery and xray machines.

She was an angel.

I was so proud of her.

I still am.
- Bethany :)

Monday, November 5, 2012

Tomorrow

Well, I'm off for the Cities, as Millie has two appointments tomorrow in St. Paul.

First up is the swallow study, which will hopefully provide some clues as to why she struggles so much with solid foods. She, then, will undergo a speech evaluation in the afternoon (this will be her third speech eval, for those keeping track).

Unfortunately, though, I doubt I will get her genetic results tomorrow. They just don't have any openings with her neurologist. So we will be waiting until December. Boo.

We're still feeling very good about where she is at and how she is doing ... but I'd be lying if I said I didn't want to know the darned results already.

In other Millie news, she has officially begun receiving services through the school district. The therapist comes once a week, which is in addition to her four-times-a-week therapies at the hospital. (It used to be five, but they put the eating therapy on hold to see what the swallow study reveals, if anything.)

I also was invited to take part in a program that works with parents to help their child communicate and develop language skills. I've only been to the orientation thus far, but it sounds interesting. It officially gets underway Nov. 13.

That's enough for today. I'll post more after her appointment.

Happy voting!

- Bethany :)

Saturday, October 27, 2012

Princess Lola

Predictably, Lola wanted to be a princess for Halloween.

We already play so much Rapunzel princess dress-up at home...


... that I wondered just how special Halloween would be for our mini Rapunzel.

But then Lola surprised me and said she wanted to be Sleeping Beauty. So, she got a new princess dress, which made her quite happy, and we dug around at home for some Aurora-ish jewelry.

Friday, we went to a Halloween party sponsored by the city. It's family-friendly so I was thinking the costumes wouldn't be overly terrifying (Lola is scared of masks) and Grandma and Grandpa Orie were in town, too, so I had a few helping hands.

It was super fun!




Lola opted against the games and more involved activities, but she had a good time just decorating the pumpkins and coloring. Millie, well, she was quite enthralled with the markers.


Trick or treat!


- Bethany :)

Friday, October 26, 2012

Lola!

You never know what you're going to get when you pick Lola up from school.

Most days are like this:



Often, she is very proud of her daily creations and she just wants to talk about her day.

But, sometimes, you're greeted by the teacher who kindly tells you that Lola had a real "emotional" day and refused to try to stand on one foot or walk on the balance beam. Or, she had to be put in the nursery when the firefighters were there because she completely freaked out when they tried to do a fire drill.

So, I had no idea what to expect yesterday when I went in for my first parent-teacher conference. Admittedly, I was a bit nervous.

But it went great!

Basically, she is doing quite well academically and is continuing to come out of her shell a little more every day.

Each morning, the kids are asked to greet one another, shake hands and wish them a happy day. Lola has flat-out refused to do this every single day.

But this, week, on Monday and Wednesday, Lola kind of looked toward her teacher, who smiled encouragingly. Lola glanced at the kids on either side of her, and, in a barely audible whisper, she said, "Good morning."

The teacher said she was so excited for her that she wanted to jump and down and clap.

Me too. 

* smile *

***

Lola is a complete sweetheart. But she also is very, very stubborn (again, completely because of Ray, I have no doubt).

A couple of weeks ago I took the girls with my aunt to a nearby pumpkin patch. It was a lot of fun. Slides, rides, wagon rides.


She even loved the little kid-sized maze.


But then I made a very stupid decision...


I love corn mazes. Anything kind of fun and competitive-ish.

Lola? Yeah, NO.

Within about 5 minutes, she started crying and begged to get out. I had the stroller so I just figured she would sit next to Millie and chill out for a bit, have a snack. Yeah, not so much. She got worse the deeper we went. And, within about 15 minutes of entering, we realized we should probably leave, but we really couldn't. About 45 minutes later, we finally got out of the stupid maze with Lola positively shaking with fear.

To this day, she continues to tell everyone about the "super scary corn" that we couldn't get out of.

Fun times.

The thing is, though, no matter how intense Lola can be when she's scared or against doing something, she's just as intense when she loves doing something. Playing Barbies, dollies or dress-up, playing board games or painting. She is into it all at 110 percent.

And that goes for Lola cuddles, too.

And those tight, good-morning hugs each day are awesome.

- Bethany :)


Thursday, October 25, 2012

an update...

Our amazing Amelia cleared her vision test last week, which was both expected and unexpected. Expected because we didn't really think there was anything wrong with her vision and unexpected because, well, she just doesn't seem to pass a lot of tests. (And I mean that in the most loving way possible.)

Actually, Millie is doing phenomenally well. She is CRAWLING! Like real, tradition crawling! She still seems to prefer to scoot around on her bottom, but is getting more comfortable with crawling every day.

She seems to especially thrive, crawling-wise, when there are other babies crawling around her, like at daycare. One problem with this, though, is she likes to watch the other kids, and the floor, instead of where she is going, so she rams into a few walls on occasion.

She also has begun pointing at things she wants. Or, more specifically, she points at my cell phone when she wants me to give it to her. And she points at Lucy (the cat) when she wants to pet (attack) her.

So very, very proud of her.

She does have another appoinment coming up. On Nov. 6, she and I will return to the Cities for a swallow study to gauge if there is a functional issue preventing her from eating solids.

Did you catch that date? Yeah, Nov. 6. Election Day, a.k.a the worst possible day for me to be away from work; I just might be the only newspaper reporter in the U.S. who asked for that date off. Fortunately, my boss has been understanding and supportive and is willing to let me come in late that night to do results stories.

As for the genetics test, we still don't know anything. I called the neurologist's office to make sure they were aware we were already going to be in town on Nov. 6. Kind of a "Hint, hint, maybe we should schedule an appointment that day to go over her blood test results" kind of call, but they didn't have any openings that day. The nurse seemed to suggest that we would just wait until our already scheduled neurology appointment on Dec. 11.

Yeah, I'm not thrilled with that idea. So I'm sure I will call again next week, before we head down  for the swallow study. If nothing else, to see if there were any cancellations on Nov. 6 and to check on the status of the genetic test. And, really, to just make sure they understand that we do not want to wait until December.

That said, the further we get from the MRI, the more convinced Ray and I are that there is nothing wrong with Millie. We think she's perhaps a little unmotivated and needs a little extra push, urging if you will, to simply try new things.

The not-eating-solids stuff is concerning, but I'm getting less and less worried about her having some rare syndrome or something. I mean, just spend 15-20 minutes with her and you see that she might not be "on track" for her age, but she is very alert, involved and interested in the world around her.

She's going to be just fine. And for once I don't think I'm just trying to convince myself of that; we really, honestly, believe that.

In other news, I had Lola's first parent-teacher conference today. I'll have to do a serarate post on Lola's school days sometime. She's such a delight, but she can be very, very stubborn! (Hmm, wonder where she gets that - RAY!)

Happy October.
- Bethany :)

Friday, October 5, 2012

the end of summer

It snowed here yesterday. Snowed. On Oct. 4.


So I'm in a reflective mood, I guess, about days with much warmer temperatures...

Years from now, when we think back to the summer of 2012, undoubtedly, we will recall everything we've gone through with Amelia.

But, that said, that really wasn't what our summer was all about.

It was about this:


And this:



And, yeah, a little bit of this as well:



This summer, we played. We worked on incorporating more healthful activities and foods into our lives. We focused on being stronger role models for our girls. We planned our super-fun-can't-get-here-fast-enough upcoming family vacation.

Sure, I caught myself feeling sad for us a few times, thinking about Millie, worrying about her because she wasn't runing after Lola or ambling throughout the yard.

But while Millie certainly has been the focus of our lives in recent weeks, her development did not consume us all summer long.

Our life consumed us. And we relished in that. We counted down to the weekends, when we'd head out to state parks. We'd take nightly walks to the playground, we wrestled and hugged and cuddled and laughed.

A lot.


 We marveled at Lola, who learned to spell and make letter sounds, who came out of her shell a little more every day, who truly became an attentive, caring big sister to Millie, sharing her toys and offering snacks and help. Lola became her own little person, demanding specific outfits every morning and cleaning up after herself without prompting. She began asking us hard-to-answer questions - "Why does the moon look different today?" or "How come people die?" - and took a real interest in learning about the world around her. Why is there grass? Why is it green? Why do birds fly? Why do airplanes fly? Why can't I fly? Why? Why? Why?

We stood by Millie as she learned to sit, roll, scoot, and, most recently, crawl. We held her waist as we worked to teach her that, yes, her legs can support her body weight, that we won't let her fall. We smiled as she took interest in Lucy and giggled as she reached for that first clump of kitty hair. We applauded when she figured out how to get from her tummy to sitting. We cheered when she began coming to meet us on her own, whether it be through scooting, crawling or a mixture of both.

We learned to better appreciate kids' music, watching Lola twirl and kick and jump along to her favorite songs. Millie began bopping to music as well, grinning wildly when a song came on with a strong beat.

We sang countless songs, read about 100,000 books.

We collected caterpillars.


We had fun.

- Bethany :)

Monday, October 1, 2012

still here...

I've tried writing several blogs in the last couple of weeks, but I gave up each time. I don't seem to have the words. I don't want to be dramatic - we still don't have any answers - but we seem to be compiling more and more questions.

Where we are officially at: We are waiting. Millie had her blood drawn last Monday (Sept. 24) for her genetic workup. The blood was drawn locally and sent to the U of M Twin Cities. We're told it can take 3-4 weeks or a month to get results.

(This is going to be the longest month of my life...)

Meanwhile, Millie's still going in for an array of tests. The neurologist ordered hearing and vision tests. The vision one is later this month. The hearing test, well, it was inconclusive. So we did another hearing test. Which was better - it confirmed that she does have hearing in both ears - but it couldn't rule out any kind of hearing loss completely. So, we are waiting until January, when she matures a bit more, to go in and have it re-evaluated.

We are also working to get her some additional early-intervention services through the school district. Every bit helps, or so we're told. But that process takes a while. We have been approved for the program - she's in - but it takes some evaluations and a lot of paperwork to actually make it happen. But we'll get there.

Speech is still a struggle... But she's still babbling lots and learning to mimic our inflections and tone.

She is struggling again with solids and eating. Not sure what is going on there... But we keep trying.


Meanwhile, she is scooting all over the place on her bottom, which is awesome. She is able to traverse the entire living room on her own. And she is learning to crawl! She can only do it for about a half a foot at a time. But she is still making progress, which is fantastic.

Meanwhile, life continues. Lola is adjusting to preschool. She still doesn't like going in the mornings but she says every afternoon that she had a lot of fun. She's not really making a lot of close friendships yet, but she is still getting used to new surroundings. More than once I've begun thinking about whether she will enter kindergarten in 2013 and what the best school for her might be. But I haven't gotten very far. Until we know more with Millie, we're all just kind of ... stuck.

Still, Lola is learning a lot at preschool. She is starting to finally become interested in learning her letters and the sounds they make. (Thanks, in large part, to her new LeadPad2, which apparently made learning a lot more fun than Mommy could. Whatever, I'll happily take it.)

Here's a word find, Lola-style. She wanted to write names on the chalkboard.


She knows how to write Lola, mom, and dad on her own. I had to help her some with Amelia. But not as much as you'd think.

So very proud of her.

And Millie, too, of course. You should see her cruise around the house now. It's so funny. She is constantly tracking the cat.

Anyhow, we're still here. We're still OK. We have bad days and we have good days. On good days, we're convinced that Millie is completely fine and will catch up. On bad days ... well ... let's just say that those are harder. The possibilities are so varied... And we try not to focus on that, we try so hard to be positive, but, yeah, sometimes, it gets overwhelming.

But, really, overall, we are doing all right. These two little girls are amazing, each in their own way.






- Bethany :)