May 2010

Just want to make sure that any Illinois families are aware of this conference.

I received a flyer that said:

Save The Date
Family Leaders Conference
Illinois Family Leaders Collaboration Group
Presents

The Fourth Annual
Parent Conference

Resources and inspiration for adult family members and caregivers of children with disabilities

Saturday, May 1, 2010
Villa Maria, lake Springfield
Springfield, Illinois

Childcare will not be provided

For more information contact Mary Smith at STARNET
mk-smith@wiu.edu

I went to the one last year in East Peoria and it was so nice. Great families and information. Got to meet some other Charge parents there:).

Stomach Flu

Anyone else having problems posting photos on their blog? I keep doing what I always do and get a ton of HTML garbage...

Lily has just not been herself all week. Well, it sort of started the week before. She just was very crabby constantly. This week she threw up twice and was lethargic and very quiet. She is just now starting to get her babble back and some energy. We got to cuddle alot lately which is pretty new for us. This morning we laid in my bed with the Melissa and Doug farm puzzle on he rlap and watched Word World and Super Why. She watched every moment and I sang and read along so she could feel the vibrations. She seemed to enjoy herself.

We Love Autumn

So it's been awhile again. thanks to all of you have written and or posted too. i will get back to you. We are in the process of moving. I won't go into detail but we are moving over the month of September and at the end planning on having a giant garage sale.

We saw Lily's cardiologist last week and she said that we can wait on the cath for 6 months! Plus Lily has finally passed to 20lb mark! She has also passed gas:) LOL. Ok it's late. She has been doing ok on this new Elecare formula that we started at the end of July. She still fights eating by mouth. She has had a few very bad gassy episodes in the past week. We will have a meeting with her nutritionist coming up soon so we shall see. We just had her last annual IFSP. We have a new therapist on the team -- a Respiratory PT. I would have never have thought of this until Lily's nutritionist asked me to take her shirt off to see how she breathes. She referred us to Brian who is just excellent. Lily is not breathing correctly because of her heart surgery scar (as well as lots of other things) -- she doesn't use her diaphragm much and uses her neck and shoulder muscles much more. I think that the next Charge Conference should have Brian's mentor, Mary Massery, speak on this issue.

And I finally gave in....and joined Facebook. i guess Twitter is not far behind. Suddenly I have so many friends:)). I hope all of you ar ehaving a wonderful Labor Day weekend!