My Story

This is the story of our beautiful little girl named Madison. Madison is now four years old. She has a syndrome called Digeorge Syndrome, VCFS, or 22q11.2. This site has been created to keep those who love her and those who grow to love her, updated on the progress she makes.

 

 

Journal

Friday, July 3, 2009 10:14 PM, CDT


HAPPY FOURTH OF JULY!  

We are going to relax tomorrow.  Well first we are going to clean the girls room and then relax.  Don't tell anyone but that pool that I have been working on for Holly and Nick is calling my name.  I figure that I have put enough hours into getting it
 looking nice that I deserve a nice swim in it tomorrow!  Of course Jordan went to bed complaining of a tummy ache and Madison told me her throat hurt.  Hopefully they just didn't want to go to bed!

The girls have had a nice week.  They went to the movies and to the beach with daddy and only had to go to therapy one day due to a Holiday today!  They got to have Hannah our babysitter two times this week and that always puts a smile on their face!

Mom was sent back to the hospital on Wednesday morning in respiratory distress.  She is being treated for pneumonia, anasarca, and possible C-diff.  She is weak but not getting any worse which is a good thing.  Anasarca is a condition where the protein is so off in the body that the body produces massive amounts of fluid which is stored in the tissue of the skin.  This fluid on Mom is coming out in huge blisters which are a source of infection.  So far they have been able to treat them and no infection in any.  They did put in a PICC line last night and so now she doesn't have to be stuck for blood or IV access anymore.   Why is it that the steps forward are baby steps but the steps backward are giant leaps?

I wish I would have had time to get by everyones site to wish you all a Happy Fourth.  One of these days life will slow down a bit:-) 

Still using a borrowed computer so no pictures yet.  
 


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Don't forget to say hi when you stop by to check on Madison. It is lots of fun seeing who is reading up on our little girl and getting to know you and your stories as well.

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E-MAIL AUTHOR

aquanutt1@bellsouth.net

HOSPITAL INFORMATION

Miami Childrens Hospital
3100 SW 62nd Avenue
Miami, FL 33155
(305) 666-6511