Rain storm is gone...Leah is better.

Leah is doing better today! She had a rough morning again but is now awake and alert. Seizures finally stopped! Bad weather brings bad seizures. I hate knowing when a storm is headed our way. It really affects Leah. 

Happy she is back to herself! 

We are back!

It's been a long time...too long! 

I realize I need to document Leah's life. 

The good and the bad! 

There's a lot more hard days than easy days. It's the life of a serious seizure disorder. 

Today...

I hate seizures! 

She hasn't woke up today. It's almost 3:00 and she has only been awake to seize then right back to sleep. 

We have been blessed that these loop seizures haven't happened in a long time. It makes for a hard day. It makes me sad. 

Leah's new FB page.

We just started a public Facebook page for Leah. We want to help raise awareness for SCN8A. If you're interested in following you can click on the link below and like her page. Thank you for everyones love and support.

https://www.facebook.com/HopeforLeah?fref=ts

The little things.

It's the little things that mean so much- it's getting eye contact when I hold her...it's the moments I talk to her and she opens her mouth and tries to make little noises...it's when I rock her and sing to her and I see a special look in her eyes.

Playing with service dogs.

Leah with the service dogs at school. She gave big smiles!

Spending some time at Shriner's hospital.

Hanging out at Shriner's hospital today. Leah got fitted for her new brace to help with her scoliosis- we picked one with butterflies smile emoticon They also made adjustments on her wheelchair. I just love this place!

A day in the life of Leah.

This disease Leah has gives her some pretty horrible days. Here is a day in the life of Leah. 

She starts the day off great! She smiles all morning. 

She turns her head to see her brother (which she never did before). Tyler sings to her and she opens her eyes so wide, she moves her arm and gives him smiles. 

Leah has a pretty good day. That afternoon she takes a snooze in her new wheelchair (I think she loves her new chair she always falls asleep in it). 

Then she wakes up in a bad seizure. At that point she is exhausted and falls asleep again only to wake up to yet another seizure. The night ends with an extra dose of phenobarbital which totally knocks her out and she is done for the day. It makes me sad! I miss her when she spends so much time in her crib asleep because of seizures. I don't want to sounds like a downer. We really focus on the good moments. That smile I got and the connection I saw this Ty and Leah is so special and it gets me through the hard times. It's the only way to keep going. We have to have gratitude for all the small things.  I pray doctors can find a treatment.