Day 30: All our buddies

When I heard the statistics that OEIS/Cloacal Exstrophy occurs in 1 in 200,000 to 1 in 400,000 births, my mind was spinning.  That means that each pregnancy has a .00025 chance in having a child with this condition. That means out of the 4 million babies born in the US each year, an average of 15 will be born with OEIS.  My child was one of those 15.   

I truly did not expect to find anyone that was going through the same thing, let alone a group of people.  My little online support group is awesome.  We may be a small group, but we are finding each other.  We support each other.  The other day as I was telling Dan about different children and their upcoming surgeries and he told me that they are like my nieces and nephews.  I thought about that.  He's right.  I want nothing but the best for each of those children, just like all of my nieces and nephew.


OEIS presents itself in different ways.  Some children have large spinal defects like Isaac, some have little or no issues with mobility.  Some have difficulty eating and need feeding tubes, others eat just fine.  But there are aspects that most have in common.  They all endure many surgeries.  These children go through so much and yet are so happy.  They are tough.  They are spirited.... They are miracles.  


 I have learned so much about everyday life from these parents.  I have learned about things I should expect in future surgeries and more.  I am really so thankful for this group and all of the parents.  I truly consider each parent in the group my friend.  


As I wrap up my 30 days, I want to finish with all of the families in our facebook group that have children with OEIS/Cloacal Exstrophy.  You all have been a positive support for us and you are all in my prayers.  Today, I pray for every family with a child with OEIS or cloacal exstrophy.  I pray for every parent, every child, every sibling.  I pray for healing for all of the children.  I pray for understanding for their siblings.  I pray for hope for their parents.  



Today I want to say a special thank you to everyone that has followed me along my 30 days of prayer.  I am touched that you have followed and prayed.  Thank you and Many Blessings to you all!