Wednesday, September 13, 2017

The most significant

just processing....Alex was invited to participate in a new program to help with his communication. I have to give my approval, so I looked it up. Sounds very promising, until I get to this line, ". . . services to students with the most significant disabilities in KY public schools."  (little bit of a gut punch there)

Sigh.... the most significant... that's sayin' somethin' in educationese.

Alex is challenging.  Alex is also a sweet and loving boy.  I love him so much!

(and I am grateful to his school for looking for new ways to serve his needs.)

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Wednesday, August 09, 2017

Alex’s Neuro Appt

With his recent seizure activity, they had us come in today.

Yes, it is common to have seizures during sleep.  I need to make a HUGE point of getting his seizure med into him before he goes to sleep.  Yes, seizures can look horrible as the little ones turn blue.  And yes, kids with autism are EIGHT times more likely to die after a seizure than the rest of the population. 

Death chances increased + seizing at night = something else for me to worry about!

We are going to do another sedated EEG in a month to see if this dose is good or if we need to go up.

Interesting thing – some of his misfirings in his brain are in the left temporal lobe – right there by his speech center, which doctor said might explain some of him being non-verbal still. … he is so interactive with people, and sweet….  But if his brain is misfiring right where expressive speech is controlled………..he’ll be nonverbal.  Prediction for future…..we may only get 20 words or so.  Sigh.  But controlling those misfirings may help in that department.  As with all things seizure related, we’ll just have to wait and see.

I was thinking of my friend and my nephew who have both recently had surgery to remove the parts of the brain that were causing their seizures, but we have multiple points, not just one or two.  Sad smile  Oh well.

On a happy note, making his follow up appointment, I realized Kai will be home by then!

Thursday, August 03, 2017

duPont Manual High School

Big day – orientations at both Manual and YPAS (Youth Performing Arts School).  Lizzy is excited (and nervous)!  Here’s to a great year!!

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Saturday, July 29, 2017

Saturday Morning Explore

Such a beautiful morning – in the 60s!  It’s been so hot and yucky.  I’ve been stuck in the house.

I needed this morning to be out and to explore – and it was awesome!

We stopped and grabbed donuts then drove over to Harrods Creek Park.  It’s kinda hidden, but so wonderful!  I could feel my spirits raising with each second!

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Loved hearing Bella say, “Mommy, yook!”  and watching her hike!  Even Joy enjoyed the hike and with all the problems she has been having with her feet lately, that was awesome!

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Alex loved the grassy areas after trying to walk on the gravel path (hard to do with a cane!)20170729_09545320170729_095942

But he LOVED the water best of all!!

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Jason found this cool swing on the trail. 

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(Where are Jessi and Lizzy?  Being awesome and helping out at a Stake activity)

Thursday, July 13, 2017

DIASTAT

Sigh.  First time to use it tonight. 

Grateful for phones that we can easily record and time seizures.

Grateful the diastat stopped the seizure.

Grateful we didn’t have to go to the hospital

Grateful we hadn’t put him into his bed yet. He falls asleep in Mama and Daddy’s bed every night.

Grateful to the nice lady at 911.

Grateful to the nice NP who was the Neurologist on call tonight.

Grateful that my boy is sleeping and oxygenating well now.

Sigh.


Love my boy!

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Tuesday, July 11, 2017

Kai’s Birthday

Yesterday was Kai’s birthday – he turned eight years old!

We celebrated by having cake in his honor, trying to learn some new Mandarin phrases, and watching Off The Great Wall youtube videos.  Smile

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Kai celebrated with cake as well!  (We sent him a care package)  They sent us some pictures!  Oh my heart could explode!  He looks so big!  Hurry up paperwork, I need to get my boy!

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Thursday, June 29, 2017

Falls on the Ohio State Park

While the littles are at their camps, we try to do something fun!

Today we went to the Falls on the Ohio State Park, then drove downtown to try out Steel City Pops.  (Lizzy has been wanting to do that for so long!)

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