About Me

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After being told I would never be able to have children, I am now a stay-at-home Mommy to Maddie who happens to have Down Syndrome. I've been married 16 years to my best friend, having the time of my life. Thanks for stopping by and sharing in our little journey through life.

Saturday, June 21, 2014

Maddie Get Her New Glasses!

After we finished at the splash pad yesterday morning, we stopped by and picked up Maddie's new glasses!

They are so cute!!  

The prescription strength increased from a +2 to a +3. They are really strong!
Her astigmatism has gotten worse in both eyes, but her crossing has gotten better!

I hope she keeps these on not only because she needs them but because she looks so stinkin' cute in em too!

Thursday, June 12, 2014

Sleep Study - Check!

Wow, I'm glad that's over!
We survived our sleep study and now will wait about two weeks for the results.  
Maddie was such a little trooper!  
She really enjoyed her bracelet :)  
Our appointment was for 9:00, but they didn't get her ready until 11:30.

She nearly fell asleep around 10:30 but held on.  

 Finally, she was all set and ready to go!

I really worried that she would not like all those probes and stickers put on her.  
I tried to prep her for what would happen, but it was kind of like the blind leading the blind!! 
I had no idea what to really expect.  
I just told her they would put a whole bunch of stickers on her.  

She was ok with most everything except the one on her throat to monitor her snoring.  
She did NOT want to leave that one on.  
After a good bit of coaxing, and finally allowing her to put it on herself, she left it there.  

She really liked that her finger lit up!!

She really didn't like the nose piece.
She kept trying to lick it with her tongue!!  Haha :)  

It was probably midnight before she actually fell asleep.  
I was shocked by how terribly she slept. 

I knew she snored and occasionally had trouble getting air.
Either I was blissfully ignorant or this was truly the first time this happened but she would literally sit straight up, gasping for breath!
And not just once, multiple times!
I'm very curious to get the results because it felt like an endless night of not much sleep, but I wonder, in reality, if things were different. 

At one point, in a sleepy stupor she got really irritated with all of the wires and threw a little fit while still sleeping. I had to chuckle at that, because that's exactly what I would have wanted to do too!
We were able to end our session about 20 minutes early because she was awake anyway.  
We got back home around 6:30 a.m. and she's been sleeping ever since. (2 1/2 hours)

Tuesday, June 10, 2014

Hide and Go Seek - Maddie-style

Thanks to her cousins, Maddie has learned the great past time of hide and go seek. 

When it's her turn to count, you gotta be quick because she currently only knows how to count to 2!
If you're lucky, she may count two rounds of two, giving you 2 extra, coveted seconds.

She may not quite understand the true concept of the game because when it's her turn to hide, after you're finished counting and you shout, "ready or not, here I come" she immediately stands up with great exuberance and enthusiasm exclaims, "here I am! I'm over here! you got me!"
the hiding behind the pillow cracks me up!

I just love these times.   

Friday, June 6, 2014

Snow in June!

My Mother-in-law told me about the blog Growing a Jeweled Rose.
It is chock-full of really fun ideas to do with your kiddos.  
What I really like about it is so many of the ideas are sensory oriented...totally speaking Maddie's language!
We made their Frozen Snow recipe the other day.
If your kids are crazy about the movie Frozen, like Maddie, she has a ton of activities relating to the movie on her blog!!!

The recipe was quick and easy and since we used hair conditioner, it smelled divine!
We didn't have the Frozen figurines she uses, but since we just visited the Kansas City Zoo and met the penguins, we threw some penguin figurines into our frozen snow for some fun!

This is one of those late-in-the-afternoon-how-much-longer-till-Daddy-comes-home activities.  
It takes hardly any time to mix up, simple enough for little hands to help create, and then you just take it out on a nice day, grab the camera, and before you know it, you realized you have survived yet another long, summer afternoon! :) 

It feels cool...(pun intended!)

It made us happy!

until, oops, we flung it up and got a little in our mouth...yuck!

After awhile, Maddie realized what's good for the hands and arms was also good for the feet!

And what's good for the hands, arms, and feet, is really good for the whole body!

And most often, sensory play totally mellows her.  
What her body doesn't do for her normally with sleep/wake regulation cycles, sensory play helps achieve somewhat of the same result. 

I originally thought this would last awhile, but for us, about an hour of great sensory play is all we got! Every bit of it was poured out on the patio!

Good thing it's simple and easy to make!  
Will definitely keep this idea on the "I think we've had enough T.V., let's do something fun!" list. 

Tuesday, June 3, 2014

A Summer of Sleep Studies and Surgery

Maddie has to have a sleep study and then surgery to remove her tonsils and adenoids.  
She began snoring a few months ago so I suspected she may have sleep apnea, which is really common for kids with Down Syndrome.  

The solution for sleep apnea is to remove the tonsils and adenoids.  
There just isn't enough room for them all to coexist since everything is smaller than usual (except the tonsils).

We have a really great doctor, so we know she'll be in good hands.  
It's still nerve-wracking.  
I remember hearing about a little boy with Down Syndrome in Tulsa, OK who died after having a tonsillectomy. 
I know from experience there's no such thing as "minor surgery."

Her sleep study is next week and we will schedule the surgery sometime later.