Wednesday, May 13, 2009

Rainy day, IEP and new friends (Spinal Muscular Atrophy)

It been raining all day and Lizzy is having a major hissy fit because she wanted to go out-side and play with her golf clubs. She has kept me very busy today. I have not been able to jump in the shower as of yet. She is right now driving in her chair back and forth yelling at the top of her lungs because its storming outside.

We went to Chicago on Saturday and Lizzy got to meet and play with a new friend named Isabella and her brother William. She had a great time and it was great to talk to Angela their Mom.

Paul has not found a job. I have sent resumes in all over the US. He is helping with Lizzy outside so I can at least get some time to get things done. It great to have some help with her this year. He can take her out-side or on a walk around the block and she tells him when she needs suction.

We have Lexy almost every day and Christen is watching Corbyn this week at Dawn's on Monday, Wed and Friday. Never a dull movement here. Actually, it seems there is no time for anything.
Christen had Elizabeth's IEP yesterday and they compromised since the state school board will not allow Elizabeth to have Video conferencing because she will not be main streamed until she is in the 1st grade. Since, all the kids in her class have IEPS they are not allowed to video the class even though its live feed and can not be recorded. So, they agreed Lizzy should be home schooled because of the fact parents send their children to school sick and Lizzy can not be exposed. She is healthy right now and has been pretty good except for that virus in March. So, her teacher is going to video tape herself a few times a month and Lizzy will watch her on her PC. Elizabeth would start Kindergarten in The fall since her birthday is late. So, Lizzy gets to stay home and be home schooled and they are helping us. We have taught her a lot this year. Her teacher will help us on things Elizabeth is having a hard time with by video taping herself. She also gave us some computer programs that Lizzy can do on her computer online to help her learn her letters by site. She knows her ABCs but is having some issues recognizing some of her letters. She has known her colors for a few years. She can count . She is very smart but we just need some help knowing how to teach her some things.
My hair has finally grown back after the bad haircut I had to endure last month. Never again will I let my daughter Dana touch my hair again. Besides my inner being taken over by menopause I am fine what ever that means.

Many prayers for Logan's family, Garrison( In the hospital), Tabitha(Being trached on Friday), Andrea D (she has been sick )and all the sick kids or the families that have lost a loved one.

I have a feeling Lizzy is going to keep me very busy all summer. Which is a good things.

We believe in miracles because we live with one.
www.our-sma-angels.com/elizabeth

Here is a video our friend MJ did and you will love it.

http://www.youtube.com/watch?v=R_RSyCejlBI

2 comments:

Angela said...

TOday definitely made up for the rain all day yesterday. Hope Lizzy enjoyed the day outside.
It was wonderful seeing you!
Angela

Darren and Jody said...

Hi,
My name is Jody Riggs and I just found your blog through another SMA family. It looks like Lizzy is a miracle especially if she's type 1. I have a 13 month old son Karson that is a very week type 1 and he is a miracle too. Lizzy is a very cute little girl.