Understanding words

We have decreased topomax from 100mg a day to 50 mg a day.

Weaned her off the prednisolone and continue giving her the medium dose of ACTH.

She now understands the words jump and spin, she also understands the sign for sit down.

Even though she doesn't speak yet at least she is understanding the meaning of words and sign, letting me know her brain is actively functioning.

She also knows what shoes are for..... I see this as progress and am very happy for her.

We are working on her understanding the words diaper, outside and drink/thirsty.

She has been grunting a whole great deal more. But I see this as her trying to communicate with me.

I will remain having faith in the LORD.. Life is good.. Especially with my daughter in it :)

Quick update... ACTH

My daughter is going to begin taking ACTH (daily injections).

I cannot believe this to be true.. This is what we wanted her to be on since we first discovered she had Infantile Spasms on Oct 2010 but sue to insurance we could not.

The price for ACTH is $150,000 for the entire set of vials needed for the duration of the treatment, luckily her insurance is there to help us through the economic barriers.

We are trying to buy a house but I doubt that will happen.... We need to be sure we are financially stable for her... getting a pre approval is too much of a headache right now....

My daughter comes first in every way.......

Yes a backyard would be great for her childhood...

Yes a small pool for her would be great during this HOT summer.

YES WE DO NEED THE SPACE!

But I just want her healthy...... I want to make sure we do everything in our power to help our little girl.

Today we gave Aliyah her first shot of ACTH on her thigh... It was horrible pinning her down so that I can make sure she doesn't kick or hit me with her hands.... It was difficult for me to see her cry... I don;t know if I could follow through and do this on a daily basis... BUT I HAVE TO!!!!!

PRAYING THIS WILL HELP TREAT MY DAUGHTER'S CONDITION!!!!!!!!!!!!

PLEASE JOIN ME .... PRAY FOR My LITTLE GIRL!!!! She deserves a chance to be Aliyah!!!!