SMA BLOG PARTY

Today is the first ever “SMA BLOG PARTY!” What does this mean?

It is simple — bloggers come together to 1) Talk about SMA, 2) Put a face to this awful disease, and 3) Help WIN $20,000 for SMA research by clicking here: http://www.voteforsma.com/ .

If you are even vaguely familiar with my blog, you know that we are 100% behind helping to find a cure for SMA. Gwendolyn and her parents are dear friends of ours and we are committed to doing whatever we can to help them.

Please help today by participating in the SMA Blog Party. Join the party AND:

1. Repost this post on your Blog, Facebook, Twitter
2.cast your vote for The Gwendolyn Strong Foundation on http://www.voteforsma.com/

What is Spinal Muscular Atrophy (SMA):

SMA is the leading genetic killer of infants and young children. It is a terminal, degenerative disease that results in the loss of nerves in the spinal cord and the weakness of the muscles connected with those nerves. SMA impacts the ability to walk, stand, sit, eat, breathe and even swallow. The mind and spirit are no different from that of a healthy baby, but the body eventually fails. Typical babies with SMA Type 1 have a life expectancy of between one and two years and they require around-the-clock medical assistance and monitoring

Here is a typical day in the life of Gwendolyn:
■7:00am ~ the night nurse leaves and we get up to start Gwendolyn’s day

■7:30am-8:00am ~ we wake Gwendolyn up (the smile on her face is priceless when she wakes up); we administer respiratory treatment #1 for the day; we take her off of bi-pap

■8:00am-9:00am ~ we move Gwendolyn and her machine cart from her bedroom to the family room for the day; feeding time #1 (100cc’s fed over 1 hour via g-tube)

■9:00am-10:30am ~ this is usually playtime; stretching and massage to keep her joints and muscles healthy; bath time (aka water therapy) every other day (which she absolutely loves!!!)

■10:30am-11:30am ~ we usually put her back on bi-pap; nap time if we can get her to take one

■11:30am-12:00pm ~ we take her off of bi-pap; we administer respiratory treatment #2


■12:00pm-1:00pm ~ feeding time #2 (100cc’s fed over 1 hour via g-tube)

■1:00pm-2:00pm ~ this is usually when nurses or therapists come to check up on Gwendolyn and give her therapy (2-5 times per week); we put her back on bi-pap; or sometimes this is playtime

■2:00pm-3:30pm ~ we take her off of bi-pap; playtime; stretching and massage

■3:30pm-4:00pm ~ we administer respiratory treatment #3

■4:00pm-5:00pm ~ feeding time #3 (100cc’s fed over 1 hour via g-tube)

■5:00pm-6:00pm ~ we put her back on bi-pap; nap time

■6:00pm-7:30pm ~ we take her off of bi-pap; playtime; stretching and massage

■7:30pm-8:00pm ~ we administer respiratory treatment #4

■8:00pm ~ we put her back on bi-pap; bedtime

■8:00pm-9:00pm ~ feeding time #4 (100cc’s fed over 1 hour via g-tube)

■10:00pm ~ feeding time #5 (400cc’s fed over 9 hours — all night — via g-tube)

■10:30pm ~ we transfer Gwendolyn and her machine cart from the family room to her bedroom for the night and get her settled for the night

■11:00pm ~ one of Gwendolyn’s night nurses arrives, we give a report of the day, and get things ready for tomorrow

■11:00pm-7:00am ~ the night nurse monitors Gwendolyn, suctioning and rotating her sleeping position as needed throughout the night

■2:00am ~ we administer respiratory treatment #5

Nobody should have to go through this, especially a child.

Please help us get the word out about this awful disease and join our blog party!