We met with Marleigh's neurosurgeon on July 3. There we discovered her syrinx (fluid-filled cavity in the spine) is very severe, taking up the entire length of her spine. Because of the pressure the fluid is placing on her spinal cord she is on major physical restriction as a back injury could be "catastrophic."
Due to the severity of her syrinx the doctor wants to do decompression surgery for the Chiari as soon as possible. This involves removing a portion of the skull as well as a spinal vertebra to relieve the pressure on the Chiari. Normally fluid would flow from the brain, down around the spinal cord, but her Chiari is blocking the natural flow and forcing fluid down into her spine (syrinx). Hopes are that the surgery will allow fluid to flow freely again and over time her body will absorb the syrinx.
We're eager to get this surgery done, but we've hit a few bumps in the road. The neurosurgeon discovered a vascular malformation in her neck. This could change the way he performs the decompression surgery so it needs to be assessed. She had an ultrasound on it yesterday; results still pending. Tuesday we met with a hematologist for extensive blood tests to check her clotting, etc, as the surgeon is concerned with Mar's easy bruising. He also suspects she has a tethered cord. All of these issues combined have us headed to a geneticist on the 17th to check for connective tissue disorders. I'll wait to go into detail about what that diagnoses would mean for our family IF she ends up having it.
Finally, we have now noticed scoliosis in Jack. Yesterday his pediatrician ordered x-rays of his spine. The neurosurgeon said there is about a 15% chance for Jack or Harper to have a Chiari Malformation as well and currently... that's my greatest hope. I pray with everything I am that Mar and Jack just happen to both have Chiari, can be treated with brain surgery, and we can put all of this behind us. I pray with everything I am that my precious babies DON'T have a connective tissue disease that is wreaking havoc on their little bodies.
I am finding that waiting and worrying is the hardest part of all this.
As ALWAYS thank you TREMENDOUSLY for your continued concern, support, and uplifting love. While this has been terrifying, I am also seeing so much beauty come from this journey as well. The ability to be more in the moment, especially with my children. A deeper appreciation for all the little things that usually go unnoticed. The unbelievable compassion and depth of love from a great many people in our lives-- some longtime friends, some acquaintances, some even strangers.
So much gratitude!
((♥))
