Saturday, February 9, 2013

CHD Awareness Week Day 3

Today is day 3 and a perfect day to talk about how CHDs have affected our family.  Our family has changed so much since Hope was born.  We have grown and learned to enjoy day at a time.  We appreciate life more now than ever before.  We don't waste our energy on the small stuff and we try hard to avoid conflict and drama.  We have too much going on and living life to the fullest to worry about drama or spend time with it.

Hope is doing great and that is amazing.  She is in preschool and loves it.  She is getting bigger, although this infection has set her back a little bit.  Today she is back to eating solid food and boy is she eating.  First thing this morning she woke me up and asked for cheese.  I love it.  There is always a little voice in the back of my head telling me she has another surgery someday soon.  I am hoping to hold off until the summer of 2014.  She will be bigger and her sats are still sitting in the 80s right now.  It will also give her more time to grow her kidney and hopefully the Fontan will not affect it at all.  It is honestly my biggest worry about the Fontan.

CHD Facts of the Day:

• Overall, one in 10 children born with CHDs won’t
survive to adulthood.
• People born with more complex CHDs face a
higher risk of death before age 18.
• Adults with CHDs continue to face a high risk of
early death and disability.
• Fewer than 10% of adults with CHDs in the U.S.
who need care from specialty adult CHD centers
are receiving this recommended care.
• Thanks to advances in medicine, it is now believed
that the number of adults living with CHDs is at
least equal to, if not greater than, the number of
children living with CHDs.

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