Our Little Fighter

Many of you are aware that we were adopting through the China Special Needs program.  And I'm guessing some of you are wondering what Elyse's special need is, since we've yet to mention it here on the blog.  Well, that was on purpose.  You see, we wanted every one to see her for the beautiful little girl she is and fall in love with those eyes and dimples the way we have BEFORE you considered she had a need.  Then, we fought for awhile whether or not to reveal anything about her need in respect to her privacy.  Well, we've decided to share what her need is, but publicly on this blog, we likely will not share how she is being affected.

Elyse has been diagnosed with Spina Bifida.  I know this sounds scary, and it was to us at first.  So much so that we never even considered it as a possibility until God continued to lead us in this direction.  So, in this post, I'm going to use some information from another blog - a blog of a mommy with two daughters from China who have Spina Bifida.  Nicole's Blog  And the REAL TREAT will come at the end - I'm going to link a video of these sweet angels.

What is Spina Bifida?

Spina Bifida is a neural tube defect that literally means "split spine." It occurs very early in the mother's pregnancy. Basically the spinal column does not close all the way. Folic acid, heredity and environmental factors can play a role in this occurring.

Spina Bifida has several different forms.  Often times there is little to no nerve damage and the child may only have minor disabilities. Other times, nerves are definitely affected, often resulting in more disabilities. Children often have a greater chance of developing hydrocephalus. Additionally, the spinal cord may become tethered (attached) and is stretched like a rubber band. Tethering can cause nerve damage and must be monitored closely since it could recur despite surgery.

Can Spina Bifida be fixed? What other needs are commonly seen with Spina Bifida?

Spina Bifida can be treated, but it cannot be cured. Once nerve damage is done, there is little you can do to reverse it. A good analogy is that it's like diabetes. It's a chronic condition that cannot be fixed, but it can be managed. Children with Spina Bifida should be seen by specialists to help monitor the child and to prevent further nerve damage due to spinal cord tethering or other related issues. Some children also experience secondary conditions associated with Spina Bifida. Those conditions include (but are not limited to) club feet, scoliosis, hydrocephalus, Chiari malformation, syrinx (fluid-filled cysts in spinal column), neurogenic bowel and/or bladder and latex sensitivities. Children will often see specialists in the following areas: neurosurgery, orthopedics, orthotics, urology, physical and occupational therapy, pulmonology and nephrology. Most children will attend a Spina Bifida Clinic twice a year until they are about five or six years old. At that point, as long as things are going well, visits may be reduced to once a year.

How will SB affect a child's quality of life?

Children with SB can lead nearly normal and full lives. Although they may have some physical limitations that need to be addressed, they tend to be very determined due to what they have already had to overcome in an orphanage or foster care setting. It is important to help your child become independent and to treat him/her as normally as possible. These children are often viewed as disabled, but they are just differently-abled! According to the Spina Bifida Association's website, most children do well in school, and many play in sports. Because of today's medicine, about 90 percent of babies born in the USA with Spina Bifida now live to be adults, about 80 percent have normal intelligence and about 75 percent play sports and do other fun activities.

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Denver Children's Hospital, where we plan to spend a good bit of time over the next few years.

Please know that Ben and I are open to any questions you may have.  We'd LOVE to share with you what we've learned about Spina Bifida.  We are so thankful God led us to explore this special need, this need is what brought Elyse to us.  We are SO blessed!

AND - without further ado, here is one of my favorite videos EVER - please enjoy:
http://myilluminateblog.com/courtney-katelyn-gower-overcoming-spina-bifida-2/

Also, here is a link to another great video:
Love Without Boundaries' Video about SB: http://www.youtube.com/lwbvideos#p/u/0/RF8V3iJ9F2Q