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.

Slowly.

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.

1 comment:

Anonymous said...

Our precious MIllie...you were awesome! Loved watching you scoot all over with your pink backpack! Love you so much!