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Life with a boy and his Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum and two Super Sisters and one yummy baby brother.

Tuesday, February 13, 2007

CHD Week

This week is now officially CHD awareness week. Governor Huntsman signed the paper work just in time last week. It is exciting because it means more people will be aware of the diseases that effect so many families. I am amazed at how new the research is. They have only been doing the Norwood since the 70's which means all survivors are in their 30s. We hope they live as long as any other person. Oh, the Norwood is the official name of the three surgeries Alex will need. To get involved, we asked our youth group to make valentine kits for the kids at Primaries. I asked if they could come and help the kids make them. With the hippa rules, any little cold could make the kids sicker. We understand. The other thing was they asked we don't bring any treats, most of the kids have dietary restrictions and it is really hard to tell them no. They told me that some kids are so desperate for something that they will eat the colored macaroni off art.. it broke my heart...no treats, got it... So the doctors and nurses will get the cookies. Hope you all have a fantastic Valentines Day.... And remember when you see hearts this week think of baby Alex and the other kids who are affected by CHD....

2 comments:

sstar said...

"The Norwood" Sounds so cool and official! I'm excited they are raising the awareness. That can only mean good things. :)

Jennifer said...

I will think of Alex whenever I see a heart, whenever I see that beautiful blue color that you are decorating his room with and whenever I see your cute little belly! I just love talking to Alex through your belly:-)