Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Wednesday, June 8, 2011


A few great things happened yesterday:

1. I was able to come in contact with more Hydrocephalus families. Thank goodness for the internet! I emailed a few moms who I found online via their blog about their personal journeys with Hydrocephalus.  One of the moms invited me into a Hydrocephalus Famlies chat group!  I have been able to communicate with them online - two famlies that are even in our immediate area.. and see the same Neurosurgeon!  They are giving excellent advice - and proving to me that the doctors, while knowledgeable in medicine, are WRONG when predicting prognosis. I've come to find through these familes and their Hydro children that NO one can predict prognosis. I've emailed with moms who had very severe Hydro and horrible outlooks who have now basically normal 3 and 4 year olds... and with moms whose children had milder cases and developed other problems later - and also with moms who have had complete opposite outcomes. Which means? There's just no way to know! So may as well just learn all the facts on the whole spectrum of possibilities so we are well prepared.... and then roll with the punches!

2. I heard back from the doctor at Duke already! We emailed her to ask about bringing Meagan for a cord blood infusion after she is born and stabilized ... she wrote back within 12 hours and said she'd be happy to work with us! They are sending us a cord blood kit so we already have it to bring to delivery - she said once Meagan is stable and has her surgery/is released from the NICU, we can arrange a trip to Duke to have her first infusion!  This has shown promising results in Hydro babies by infusing them with their own unharmed stem cells as the brain stretches out and 'regroups'.... we hope it will help Meagan too and are excited to be in the first steps of communication with Dr. Kurtzburg out at Duke! She is doing amazing work!

Aunt Katie, Uncle Mike, Reagan and baby - you may have some visitors at some point since you are the closest ones to Duke we know! :) I'm looking forward to little Meagan invading your home! haha

1 comment:

  1. This is all positive news, Molly. Wonderful!!
    Karen & David