lilyannablu blogspot.com

Calm Amongst the Chaos

A family surviving and thriving with a child with CDKL5 disorderLGS disorder, severe epilepsy

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my wonderful life

Tuesday, September 21, 2010. 365 Days of Gratitude - September 21, 2010. 365 Days of Gratitude - September 20, 2010. Sunday, September 19, 2010. 365 Days of Gratitude - September 19, 2010. 365 Days of Gratitude - September 18, 2010. 365 Days of Gratitude - September 17, 2010. Sunday, May 2, 2010.

Jades journey with CDKL5

Little is known about CDKL5. It is a devastating neurological condition causing a variety of problems, intractable epilepsy being one of the primary signs. Wednesday, March 21, 2012. So, we head back next week for another consult with the epileptologist and a follow-up with her new .

Jenelles Journey

Wednesday, October 04, 2017. October, my favorite month. I love this time of year. And we are long, long overdue for an update. Jenelle getting ready for the ceremony. Jenelle and Sandra anxiously waiting to go onstage. Our pretty and proud 8th Grade Graduate. As a solo for treatment of Lennox Gastaut Syndrome. As a result, we.

All About LilyAnna Blu

Lily 2 and 3 yrs old. Feel free to hang out here and check it out, but updates have moved. Welcome to our site! Here you can meet an angel on earth named LilyAnna Blu! Lily having a giggly morning! Lily taking some assisted step with her Physical Therapist.

The Wagoner Family

We may not have it all together, but together we have it all! Monday, April 26, 2010. Hailey and UB in the cave as Hailey calls it. It is the inside of the waterfall when the water is running, but Hailey only likes it when the water is turned off. Brandon just put that canopy on as the previous owners left the base, but the canopy was ruined. I will try to update more often, which as long as i hit once a month that would be a big improvement from the last four months. Sunday, December 6, 2009.

From the Runway to Diapers

I am Kim, I am a wife to a gorgeous man. Mom to a beautiful 7 year old with a genetic neurological disorder, mom to a cute 4 year old who lives her entire life on volume 10. And finally our baby boy who was born Feb 2009. Wednesday, September 16, 2009. 454 wish we could have left it on a better number. Sunday, September 06, 2009. I appear to become super mom and I am so far from it. I mean, why not.

Life on Podtburg Circle.

Monday, December 08, 2014. Wednesday, September 17, 2014. The Therapist The Colorado Profiles Project. Tuesday, September 02, 2014. Hope lies in dreams, in imagination, and in the. There is nothing either good or bad, b.

I tripped and fell into suburban bliss

I tripped and fell into suburban bliss. That whole getting knocked up in college thing really worked out well for me. Thursday, October 2, 2014. Nothing makes me hate writing more than a writing class! Fortunately she is giving me the opportunity to fix my essay and resubmit it for another grade. The words exploded out of me. Other than school, life is good.

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Calm Amongst the Chaos

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A family surviving and thriving with a child with CDKL5 disorderLGS disorder, severe epilepsy

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This web page lilyannablu.blogspot.com states the following, "Lilys Story Welcome to CDKL5." We saw that the webpage said " Sunday, March 11, 2018." It also said " Thank you, please, please, please, please. Please , please, please, please. In your holy precious name,. Oops I mean your will. But God, can you please, please, please match yours to mine? Living in fear in Arizona. Hi I am Kim and as much as I love Jesus I have realized I dont trust him very well. 15 years later my prayers have changed for her and of course our ac."

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