October is Spina Bifida Awareness Month!
Spina bifida, which literally means “cleft spine,” is characterized by the incomplete development of the brain, spinal cord, and/or meninges (the protective covering around the brain and spinal cord). It is the most common neural tube defect in the United States—affecting 1,500 to 2,000 of the more than 4 million babies born in the country each year.
Arwen Noel was diagonsed in utero at 18 weeks with myelomeningocele spina bifida L4/L5-S1. ("is the most severe and occurs when the spinal cord is exposed through the opening in the spine, resulting in partial or complete paralysis of the parts of the body below the spinal opening. The paralysis may be so severe that the affected individual is unable to walk and may have urinary and bowel dysfunction")
It was very overwhelming emotionally and physically for us when we first heard the doctors tell us. So many different medical words, diagnoses, and outcomes were thrown at us in those first few weeks and we just felt like crying every day. But with the help from the Lord and many sb families around the country, we were blessed with a sense of peace very quickly as we sought out many ways that could help give Arwen the best life possible no matter what sb threw our way. And we continue to seek God's direction each and every day as Arwen faces many new battles due to her sb. Arwen's sb story in a nut shell for those of you who do not know:
Right now she wears theratogs for balance/support/help inward rotation, smo's for ankle/foot protection, and afo dynamics to help give her the spring in her steps that she doesn't have naturally due to being born with her feet bending upward towards her ankle-she doesn't have very much feeling or sensation through some of her legs, ankles, or feet- cannot move her feet and toes (hard to explain lol), rotates inward from hip and tibia, her right leg is a lot weaker than her left, doesn't have very much muscle definition in her hip flexors, walks wonderfully with her pink camo reverse kaye walker, has a high pressure and neurogenic bladder which doesn't allow to her to empty on her own and in return has to be cathed 4x a day, she cannot control her bowels, has chronic uti's, has a vp shunt for hydro, and doesn't drink well on her own so has been on and off the ng tube to help with that. Our long term walking goal would be for her to eventually walk with arm crutches and smo braces to protect her ankles/feet. She would most likely have a wheel chair for long distances since she will get worn out quickly.
That seems like a lot and is at times, but these things don't define who Arwen is a person. They are just another part of her life that makes her the wonderful little girl that God created for His glory.
There are so many different "medical" assumptions to why children are born with spina bifida, but ultimately God chose our precious girl to have spina bifida so that His glory can be made known. Her spina bifida is not a curse, but a blessing to show the world that God is still sovereign through a disability and His love is still perfect through the blood of Jesus Christ that was sacrificed for those who believe. She is made perfect through the cross.
Please come help us spread the awareness of Spina Bifida and to give God the glory for what He is doing in Arwen's life.
Sb Cupcake Donation Day
Saturday, October 29 · 10:00am - 7:00pm
Location Cupcake A La Mode
11529 Ash Street at Park Place
http://www.cupcakealamode.com/ (913) 338-1911
This will be at their Leawood location only. Open from 10am-7pm
Come learn more about Spina Bifida, greet some cute kiddos, donate to help support our local chapter, and show your support to our kc spina bifida families.
To learn more about our local Spina Bifida chapter and how you can help please visit http://www.sbkc.org/
No comments:
Post a Comment
Note: Only a member of this blog may post a comment.