First - there are a lot of sick SMA kids (and otherwise) in the hospital with RSV and various other stupid sicknesses. We're praying for them. Get better soon!
We started a weekly live broadcast of Emily's nighttime routine last week and it went over very well. :) We had 9 viewers for 1.5 hrs and went through tummy time, The Vest, Cough Assists, suctioning, administering medicine, and some other things. It was a lot of fun. Our plan is to do this once a week on a day TBD. I thought it was going to be Thur nights, but apparently not... honestly, b/c we watch Hell's Kitchen. :) Anyway, future shows will be viewable at:
http://www.ustream.tv/channel/emily-bedtime-treatments
We're are all doing well - getting back into the swing of things. A couple of things we're trying to get done for Emily:
- Powerchair
- Breast Milk for feeding (to replace Rice Milk) - denied by insurance b/c there is "no scientific proof that breast milk is beneficial to children" -- HA!
- Video attendance at school
- "Eye Gaze" system for communication
Peace <><
7 comments:
Love the new blog! We watch Hells Kitchen too (Love it) So what night will we get to see Miss Emily? Skylar just loved it, we should let the kids chat VIA web cam some time :) have a good night and an awesome weekend Sheila
Hey Nate! I love this new blog! It is beautiful. Glad to hear everyone is well.
Weekly love broadcast! I love that idea! More power to you - especially with the weights!
Oh! I meant Weekly live broadcasts!
Well "love's" OK too!
Love
Hey Nate- It's Holly- I wrote and told you helloa few months ago (we went to LCS together) I have enjoyed seeing and praying for your sweet girls!! I just wanted to let you know I heard about a couple who is friends of one of my friends- They have a healthy 2 1/2 yr old girl, a son who passed away last year at 4 months from SMA, and their new 4 month old was just diagnosed with SMA. They are out visiting Dr. Swoboda right now and I thought you may be able to minster to them in a way one else could. Just had to share this info with you- This is their blog http://dailylivingtodie.blogspot.com
Thank you, Thank you Holly. I know about this family but I have been unable to find much out about them. I've left a comment. :)
Where do you buy breast milk? Is it human breast milk? I'm confused.
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