Wednesday, December 30, 2009

Try as I might...

I cannot get this video of Olivia to load right. Guess I'll have to leave that to the husband when he can get around to it. Tuesday night she had a wonderful night of playing, just one or two seizures, and an hour of talking. We haven't seen our daughter be our daughter like that in months, probably since September or October. The video is a minute of her talking. Its really funny and I will keep trying to get it up.
Today seizures have been minimal as well. We had three appts today and during the last, therapy, she did well and only had one or two during that hour of intense work. That is wonderful for her. Of course, the goal is zero, but we will take an improvement for now.

I also found a book called "Road map to Holland". Its not written by the same woman who wrote the poem, but a different woman whose son also has Down syndrome. She did write it for all women and families who have children with special needs. Its basically her memoirs of the first two years of her son's life. While it makes me cry most often, it also makes me feel like I'm not alone. The things you think and never want to say out loud, I've found, have been thought, said, and even written by other women, namely in this book. Its a wonderful resource, and while it is specific to a family with a child who has Down syndrome, it will speak to everyone. The NICU experiences, glances from people in public, concerned 'whats wrong with her' questions...all thats the same. Its nice to know someone made it through that without going nuts.

Thanks again for your prayers. The Lord has blessed us, at the very least, with a few days of minimal seizures. We always hope and pray for more good days, but will take what we can get. We love you all and appreciate you so much!


  1. I talked to your mom -- maybe you could load the video to Facebook instead? We all want to get a look! - Jane

  2. Kelly - do you use google picasa for your photo storage? It's really simple and organizes everything photo related. I think my girls do all their blog photos and videos easily from there. So happy for your great day, and, Happy New Year!

  3. Hi, Kelly, Brian and Olivia:

    I just found your blog and was unaware of Olivia's medical condition. We will certainly be praying for her healing and for strength for you and Brian. Every day that you see progress is another step closer to her healing. We will stay in touch with you through this blog. Praying for a blessed New Year for each of you.