Day 14: Natalie

Meet Natalie and her big sister and little sister. Aren't they adorable! It is clear to see from her picture that Natalie has an amazing personality. Like my little Isaac, Natalie also has OEIS. She is 2 1/2 years old and has had 10 surgeries. She has been through a lot and continues to smile and touch peoples lives. It's easy to see how she touches people's lives and makes their lives better just by knowing her.



Nothing is stopping this little girl! She gets around with her little walker and goes everywhere with it.

She has recently had surgery to correct her club feet. Another challenge she is facing right now is taking food by mouth. This is sometimes a challenge for children with OEIS due to their intestinal issues.

Today I pray for Natalie. I pray that her she keeps walking all over the place and that her feet heal from surgeries. I pray that she will not need anymore surgeries for her feet and I pray that she will show great improvements with her eating. I pray for complete healing upon her body.

Day 13: Ella

This sweet little girl is Ella. What a happy little girl.

She is smiling through it all....even Chemo. In December, when Ella was only three months old she was diagnosed with Neurblastoma. This is a very aggressive form of cancer that develops from nerve tissue. She has a tumor on her spine and has been treated with Chemo. Yesterday was her last day of chemo and she will be re-evaluated in 2 to 3 weeks. What a strong little girl to endure all of this, all before her first birthday.

Today I pray for Ella. I pray that the chemo she endured was successful in beating this cancer. I pray for complete healing of her precious little body.

For updates on Ella here is a link to her facebook page:
https://www.facebook.com/pages/Praying-For-Ella-Wirth/305742592789674

Day 12: Mattie Stepanek

Before children I would look forward to the moment in my day when I would get home from work, grab a snack, turn on my DVR, put my feet up and watch the most recent episode of Oprah. I am not going to lie and pretend like I wasn't super bummed when she retired from day-time television.

One day I was watching and I learned about Mattie Stepanek. He was a young boy. A poet. A peacemaker. He inspired.

Mattie had a degenerative neuromuscular disease. His body and body functions like walking and breathing were affected by this disease and eventually took his life. Despite his challenges and obstacles, he considered himself and philosopher that loved to play. He wrote beautiful poems and wanted peace for everyone. There is even a cause for his canonization to Sainthood.

If you are looking for inspiration from a beautiful soul, check out www.mattieonline.com

Today I am thankful that I was obsessed with watching Oprah and hearing Mattie's story. He inspired me to be a better person and he still does.

Day 11: Rock Star Runner

Check out this Rock Star Runner!

http://now.msn.com/living/0530-boy-cerebral-palsy-race.aspx


I saw this video the other day and was instantly moved to tears and inspiration. What an amazing feat for such young person!

I would like to know what doctors said he would and wouldn't do when he was born. Would he walk? Would he run? Would he run a 400 meter race? I am guessing they may have doubted these things would not happen. But he proved that he COULD!

Today, I pray for this boy. I send gratitude to him and for the person that shared this video. I send gratitude to the teachers, students and community that cheered this boy to the finish. They all believed in the power of "I can"!

Day 10: New babies and their mama's

I am part of an online support group for families with someone with OEIS/Cloacal Exstrophy. It is a wonderful group. We are friends even though we don’t know each other and everytime we have an appointment at our hospital (which many go to), we like to see if we can meet another family. The group has been awesome for me. They have given practical advice, support and a sounding board.

There are some families new to the group that are awaiting their new little ones’ arrival. Today I pray for those families. I pray for the best health for the mama’s and their unborn babies. I pray for any mama and papa hearing about a difficult prenatal diagnosis and I pray they find strength and love in the power of love.

Day 9: Kelle

One of my favorite blogs is, Enjoying the Small Things by Kelle Hampton. Kelle is a mother of 2 adorable little girls, Lainey and Nella. She shares about their everyday lives and how she “enjoys the small things” in life through her words and photography.

When I stumbled upon this blog, I couldn’t stop reading it. It always would put a smile on my face and help me think about all of the little things in my life that make me smile.

Kelle recently wrote a book called, Bloom: Finding Beauty in the unexpected. She openly shares her story about the birth of her second daughter Nella. Nella’s birth, “rocked her world” when she found out that Nella had Down Syndrome. Bloom is a beautiful book reminding us that as Kelle so wonderfully says, “we are more alike than different.” To me, she is such a great example of enjoying her life and embracing everything, even the things we don’t plan.

Today, I send positive thoughts, vibes and prayers to Kelle. I appreciate her candid reminders to enjoy the little things in life and that every life is beautiful.

Check out her blog at www.kellehampton.com

Day 8: Trennor

Doesn't your heart just melt when you see this lovable, handsome little man! This is Trennor and he is the first and so far only friend that we have met with OEIS in person. Trennor and Isaac were both in the hospital at the same time. It was such a blessing to meet this blessing.

He is an adorable little guy with a smile on his face. His mom is an amazing mother, always right by his side, and his best advocate.

OEIS is a complicated complex and it does not present itself the same in every child. As you all know, Isaac's spinal defect is very severe and causes his biggest challenges. Trennor's challenges are in his intestines. This means that Trennor has had many surgeries, hospital stays, and tube feeding. He has not been able to take a bottle until a few weeks ago. Trennor has been such a trooper during the 1 1/2 years of his little life spending time in and out of the hospital and enduring many intense surgeries.

His mom, Megan has been his rock, right by his side. She has been his advocate, finding the best medical doctors and facility for Trennor, even if that meant being far away from her family and home for long periods of time. She has even started a group called Trennor's Heroes, a non-profit organization to help defray their medical costs and traveling costs related to Trennor's care. They also help raise awareness for colorectal disorders and plan to help other families with children with severe medical needs. How awesome is that?!

You can check out Trennor's Heroes on facebook at Trennor's Heroes. Tomorrow they are holding a fundraiser
"Trennor's Heroes needs you! We are serving brunch at the Ronald Mcdonald house in Danville PA next Sunday at 1130... Starting to cook and prep for it around 9-930am. We need some heroes for this local charity. The next months calander looks bare for meals for the families that stay there. While we are out having picnic's and going to Knoebels these families are praying that their children will survive! We are also planning to do dinner sometime later this month. Most likely June 22nd. If you can donate your time or money to help us pay it forward please contact me or Nici Hilbert Slater...Sunday's date is june 3rd 2012..So if you have nothing to do next week come out and help Trennor help others!" ~ from Megan's FB page

Please help this family by keeping Megan, Trennor and his dad, Rich in your prayers. Today I pray for Trennor, for complete healing on his body. For his intestines to work properly and for the blessing to eat anything he wants! I pray that Trennor's Heroes has a successful fundraiser tomorrow.