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 :)