Sunday, April 7, 2013

I love my family and Friends

Today, we took pictures outside between the rain. What a great chance to get some nice photos.  Me - taking pictures is still such a great hobby of mine. 

What do you think about proactive vs reactive medical professionals? At some point we have to learn to trust those who have the best experience and knowledge to help us make decisions for our son. Recently, I was on online talking with SMA moms and its probably the most useful way for me to learn how to care for Bryce. Not only can I learn from them, but I can have confidence to keep asking questions, keep asking for equipment, and keep asking for ideas outside the box. On the other side, it can be overwhelming because we ultimately as parents have to choose what to do.. some folks might not agree.. some doctors may or may not agree - the more I spend time with other parents and our friends with kids, the more confident I feel about my choices with my sweet darling.  

Our legislatures provides money for programs which have impacted our life significantly. These include  the county nurse who comes to our home usually twice a month, and Early Intervention who loans us  equipment, learning resources, gives us ideas for adapting toys to his age and skill level, provides occupational, physical, and  speech therapists who come to our home.  I love watching Bryce throw his balls, play with his friends, smile and talk to us. He is so fun, loving, and has the best personality.  We had dinner with friends tonight and he  was adorable snuggling and playing with the other little ones.

Our neurologist called us the other night to help me in my endeavor to appeal Bryce's denial of developmental disability services here in our great green pioneering state of Oregon. Interestingly when I went to Salem and spoke in front of the senators about my son's condition and his disabilities I seemed to make a small impact and create some awareness about SMA-1, now when I go to appeal and meet my local representatives in May, I hope they will change the  process of approving a child's DD.

 Fight SMA and Families of SMA are just fantastic folks.  We are getting more support in finding research to support my appeal's hearing for Bryce and all children with SMA-1 in Oregon to be not only qualified but also recognized as developmentally disabled. The resources from  Oregon would help us tremendously and I hope will be a trend for future SMA parents.  

I am off to bed. I am grateful for my friends and for my husband. I love all little children. I love my son so much and am so proud of him.  I love singing, dancing and throwing things with him. Balloons by far are his favorite toy at the moment. Besides the catch me kitty grandma Elaine got him. That puts a great smile on his face too.

 Love and peace to all! Thanks for following us on our blog.  Keep in touch.

1 comment:

  1. Gorgeous family photo, you guys should frame that one! Love Lotta, Ty and Erik