Sunday, March 2, 2014

Big day! Our bill HB105 is being voted on!

Tomorrow Monday the 3rd is a big day for our family! The House is voting on the bill for CBD oil. Our group is pretty confident the bill will pass but I am very nervous! Just a small note: honestly this shouldn't even have to be voted on, we should have all rights to access any treatment we need to save our children's life. Please say lots of prayers for this to pass! It all goes down at 3:00 tomorrow. I am going up there with Leah. They need to see our precious children. Chad has important work to do so he can't make it, so I am taking my dad with me. Our group is all wearing purple! All media will be there.

A little update on Leah. She was experiencing a lot of seizures last week, we are talking a seizure an hour. She still maintained her ability to be aware and move a lot because of the dopamine but the seizures needed to slow down. We spoke to Dr. Swoboda, she was disappointed that the dopamine caused her to have so many seizures so she backed off the dosage a bit. It helped. Her seizures slowed down but now what? We want to continue the dopamine so now we are going into Dr. Filloux office this Thursday to talk about the seizures and what is the next option. By the way, Dr. Swoboda told us she fully supports us to try CBD oil. Yay!! It's so nice to have all of our doctors support.

We found out this past week that Leah loves balloons, what two year old doesn't love balloons! I tied the balloon on her wrist really low and her eyes followed that balloon for hours. She would lift up her arm and try and touch the balloon. It was so fun to watch. Here's a pic:

Leah has finally gone back to play group at Kauri Sue Hamilton special needs school. It was bear day. All the activities revolved around teddy bears. Leah got to smell scented play dough and hold it in her hand. She pushed hard down on the play dough when it was in her hand. They do a lot of sensory activities. The therapist made a bear cave for the kids to go in (it was so cute). We read bear stories in the cave (pic with Ty on the bean bag). At the end the group goes to a sensory room to play. Leah loved the little tramp. We bounced her and she always in some way told us she wanted more. She would move her legs to tell us. I love that we are establishing some kind of communication with her. She also laid in the balls with Tyler and went down the slide. Through her eyes we could tell she loved every minute of it. 

We went to Spaghetti factory for Chad's moms bday and a guy made her a cute angel princess balloon.

Sometimes a door in her brain opens for a minute. Leah gave us smiles today! Best day ever!

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