Kaley's First Trip to Houston and Plane Ride

We made it to Houston, around Houston and back. We even had some fun, and lots of good food along the way! We were very lucky to have some wonderful accommodations from Kelli and James. We went to Hermann Park rode the train and Kaley played in the park followed by eating lunch at a cafe which Kaley decided Ketchup was good enough to eat all by itself. We even got some pool time in :) while Kelli and James napped, I think they were a little overwhelmed with a 1year old wondering/destroying their apartment!  We also met with the pediatric neurosurgeon he was in agreement with the MRI yes it is a lipomyelomeningocele and her cord is tethered which is what is causing the syrnix to get bigger, the short version is the spinal fluid is being restricted and is unable to flow up adequately therefore the more the lipoma grows the less fluid can flow freely therefore the syrnix also gets bigger. So the plan is by removing the lipoma the rest will resolve.  We scheduled her surgery for October 24. We will have to be down there two days prior for labs and to meet with a pediatric plastic surgeon (who will be closing the incision) and will plan to be there for 3-5 days after surgery.  While this plan is very overwhelming, I do feel very relieved to finally have it set. I have to say the staff at Texas Children's Hospital is amazing and we had a very good visit overall. Thank you to everyone for the positive thoughts and prayers. We could continue to use them over the next few months!

Riding the train around Hermann Park

Ketchup for lunch with a side of hamburger

Having some fun!!!!

Ready to go back to Kansas.........

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.