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!
Tuesday, June 26, 2012
Monday, June 25, 2012
Day 29: Grandparents
We are so blessed to have amazing parents. They are wonderful grandparents for our children. Our sisters have all been rocks for us too. We couldn't be more thankful for all of the love and support that they have given to us this past year.
They all accept our boys for exactly who they are and embrace their special qualities and talents.
Papa is such a good singer.
Grandmummy gives us good play therapy.
They all accept our boys for exactly who they are and embrace their special qualities and talents.
Papa is such a good singer.
Grammie always finds ways for us to have fun!
Grandmummy gives us good play therapy.
Pap Pap entertains us for hours.
I am so grateful for our wonderful parents and support system. They have paved the path for us so that our journey is smooth. They have loved us all. They have been great role models for us. I pray for our parents and siblings. I pray for their health and happiness. Thank you for all of your unconditional love.
Saturday, June 23, 2012
Day 28: Jamsie and children fighting brain cancer
One day I stumbled across this blog. I am honestly not sure how I found it or what search I was looking for, but when I found it and saw this sweet little boy's face and awesome hair (it looks like he had more hair than my Gabe did at birth... that's a lot of hair!) I kept reading. As I read this story about Jamsie from his parents' blog my heart broke for them.
They had a healthy, bouncing baby boy and when he was 8 months old they discovered he had a tumor in his brain called a rhabdoid tumor. Sadly, within a month of being diagnosed, the disease took his life.
Obviously this story is heartbreaking. It took breath away though when I read about some of the dates. Call me weird, but I am pretty good at remembering random dates. Anyway, I noticed that James was born in late October of 2010 and he passed away July 16, 2011. He passed away the day that we brought Isaac home from the hospital after his NICU stay.
I think this coincidence in dates struck me because there have been moments in our journey with Isaac that I have felt so down and thought, why me, and why does my innocent child have to deal with all of this. But I realized that despite all of Isaac's challenges, I got to bring him home and he is with me today. I remember the day we brought Isaac home as we were driving out of Cincinnati Children's Hospital Dan said with tears in his eyes, "this is one of the proudest moments in my life."
On the day I remember as so joyous for my family, my heart aches thinking about how awful that day must have been for James' parents.
James' parents have started a fund in honor of their son to help in the research of brain cancer in children. Please visit their blog, http://jamescamdensikes.blogspot.com/ to read about his story or to donate to their fund.
Today I pray for James' family that they have peace. I pray for other families facing brain cancer and tumors that their children beat the tumors. I pray for funds like The James Camden Sikes Fund to help researchers find cures for brain cancer and tumors.
They had a healthy, bouncing baby boy and when he was 8 months old they discovered he had a tumor in his brain called a rhabdoid tumor. Sadly, within a month of being diagnosed, the disease took his life.
Obviously this story is heartbreaking. It took breath away though when I read about some of the dates. Call me weird, but I am pretty good at remembering random dates. Anyway, I noticed that James was born in late October of 2010 and he passed away July 16, 2011. He passed away the day that we brought Isaac home from the hospital after his NICU stay.
I think this coincidence in dates struck me because there have been moments in our journey with Isaac that I have felt so down and thought, why me, and why does my innocent child have to deal with all of this. But I realized that despite all of Isaac's challenges, I got to bring him home and he is with me today. I remember the day we brought Isaac home as we were driving out of Cincinnati Children's Hospital Dan said with tears in his eyes, "this is one of the proudest moments in my life."
On the day I remember as so joyous for my family, my heart aches thinking about how awful that day must have been for James' parents.
James' parents have started a fund in honor of their son to help in the research of brain cancer in children. Please visit their blog, http://jamescamdensikes.blogspot.com/ to read about his story or to donate to their fund.
Today I pray for James' family that they have peace. I pray for other families facing brain cancer and tumors that their children beat the tumors. I pray for funds like The James Camden Sikes Fund to help researchers find cures for brain cancer and tumors.
Thursday, June 21, 2012
Day 27: Kaleb
This is Kaleb. Isn't he such a cutie pie! He is almost 2 1/2 and his family is one of our friends in our OEIS/cloacal exstrophy support group. He lives not too far from us and we hope to meet him soon. I am sure both Gabe and Isaac would love to play with him!
Today Kaleb is having a big surgery on his hips and bladder. It is a long surgery and a long recovery. It is the same surgery our little friend Maddie just had and that Isaac will have in the fall.
Today, I pray for Kaleb that he has a successful surgery, quick recovery and good pain management. I pray for complete healing upon his little body. I pray for comfort for his parents as they await while their baby is in surgery and healing.
Tuesday, June 19, 2012
Day 26: Samuel
Just look at this little Cherub. His name is Samuel. He is just precious. His eyes are so gentle but also have this look of strength and determination.
He is just shy of 3 weeks old and was born with OEIS. Talk about tough. He has already been through multiple surgeries. He has faced a serious infection which has caused him to undergo more surgery and pain on top of his main surgery. Samuel needs lots of prayers. Please pray with me today for healing upon Samuel's little body. I pray that his wound heals and he is not in pain. I pray for his surgeries to be successful and for each part of his body to function properly. I pray for complete healing. I pray for his parents and his siblings. Please give them strength and hope during this difficult time.
He is just shy of 3 weeks old and was born with OEIS. Talk about tough. He has already been through multiple surgeries. He has faced a serious infection which has caused him to undergo more surgery and pain on top of his main surgery. Samuel needs lots of prayers. Please pray with me today for healing upon Samuel's little body. I pray that his wound heals and he is not in pain. I pray for his surgeries to be successful and for each part of his body to function properly. I pray for complete healing. I pray for his parents and his siblings. Please give them strength and hope during this difficult time.
Monday, June 18, 2012
Day 25: Brenna
One day as I was flipping through my friends Facebook status' I stumbled upon a status to please say prayers for a new baby named Brenna. There was a link to a blog called, Blessed by Brenna. I definately wanted to say prayer for this little girl, but I wanted to know why. Why did she need extra prayers?
I went to her blog and immediately my heart poured open for this family. They had recently had a baby and found out at delivery that she had an extremely rare skin disorder called Harlequin Ichthyosis. This causes her skin to grow very quickly and puts her at risk for infections. There is a lot of care to keep her skin healthy and free from infection. Her parents are amazing and so is this little girl.
I encourage you to check out her blog, www.blessedbybrenna.blogspot.com
I know I have been blessed from reading it and I am sure you will too.
Today, I pray for Brenna. I pray for health and happiness. I pray for healing upon her skin. I pray she stays infection free. I pray for her parents and her big brother for happiness and peace.
Day 25: Maddie
This sweet, little Princess is Madison. She is 4 years old and full of life. Her smile is contagious.
She has OEIS and today she is having surgery on her bladder and hips. It is a very strenuous and long surgery with a long recovery. This is not the first time she has had it either. She has had this surgery twice before.
Today, I pray for sweet, little Maddie. I pray for a successful surgery with no complications. I pray for a speedy recovery and good pain control. I pray for her parents to have comfort while they wait for their baby to recover.
She has OEIS and today she is having surgery on her bladder and hips. It is a very strenuous and long surgery with a long recovery. This is not the first time she has had it either. She has had this surgery twice before.
Today, I pray for sweet, little Maddie. I pray for a successful surgery with no complications. I pray for a speedy recovery and good pain control. I pray for her parents to have comfort while they wait for their baby to recover.
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