Getting Ready for the trip to Houston

Kaley underwent and MRI in July and it was felt that a significant change has occurred over the last year and surgical intervention is the recommendation. While we have many amazing specialist here in Wichita, we have decided to go to Texas Children's Hospital in Houston Texas. While there have been many hurdles, this last week they called us with our appointment next week. While I was relieved to finally have it scheduled the planning part has been a little overwhelming. A few more bumps along the road but we seem to be on the up hill stretch. At least for now. My dad and I will be flying down with Kaley to see the doctor. Lucky for us Kelli has already figured out where we need to go, Baylor Medical Center is HUGE!!!! At least we will get to see Kelli and James while we are there :)
So lots of prayers would be greatly appreciated (especially for the plane rides and the other passengers)

Below is so information on Kaley's condition, she also has a lipomamyelomenigocele, and most likely has some teethering of her cord but there is no way to truly be sure of this until they are in surgery.


Syringomyelia (pronounced se-ringo-my-EEL-e-ah) is a cyst in the center of the spinal cord that is filled with fluid.
The cyst, also called a syrinx (pronounced se-rinks), can form anywhere along the spinal cord. It can get larger and longer over time. This puts pressure on the spinal cord. The pressure can cause symptoms. If not treated, it may also eventually cause nerve damage.

Syringomyelia in Children

Children who have other problems involving the brain and spinal cord often have syringomyelia too. Many times, these other neurological problems are present when the baby is born (congenital). Congenital problems that can cause syringomyelia include:

• Chiari 1 and 2 malformations
• Hydrocephalus
• Myelomeningocele
• Lipomyelomeningocele

Other childhood conditions, such as spinal cord tethering or a spinal cord tumor, can also cause syringomyelia.
Not all children with these conditions develop syringomyelia. But any of the conditions can change the normal flow of a child’s cerebrospinal fluid (CSF)

. The cerebrospinal fluid often collects inside the spinal cord to form a cyst.

Children can also develop syringomyelia later on in life. Conditions that may trigger the formation of a cyst include:

• Injury to the neck or spine
• Meningitis

• Tumors

Syringomyelia can also occur without a clear cause.