8 Week Update....The Road Ahead

I love learning new words and expanding knowledge through language. But today I learned two new words and responded with a more familiar word. The familiar word is less popular with my more Christian friends, and the new words seem largely foreign to all of my friends, regardless of religious affiliation.

We have considered posting an update on Madeline many times since mid-January but we are too tired to do so. Madeline made it through the surgery and returned to home, but the transition has been more difficult than we expected. She still struggles with headaches and stomach pains. Swallowing continues to be a traumatic experience, and she fights between being a hungry adolescent and the embarrassing act of public choking and coughing. We spend portions of each week visiting OT, PT, a therapist, and multiple other healthcare professionals. [I continue to grow compassion for others' who have faced chronic health challenges and the multitude of cancer survivors (who have appointments upon appointments to continue their survivor's journey).] Madeline returned to school yesterday only to revisit the doctor for our scheduled post-MRI visit today. 

Basilar invagination are the two new words I learned today. We looked at MRI scans and these two words described the pinch in the picture. This is the name of Madeline's newly discovered post-chiari condition. It simply means Madeline's brain stem remains compressed; however, the compression is no longer from the skull but from the C2 vertebrae in her spine. It is not uncommon for chiari-malformation patients to also suffer from basilar invagination, yet the spinal compression is often resolved by the initial Chiari decompression surgery. But not in Madeline's case. To the right of the spine is Cerebrospinal Fluid (CSF). For some reason this is an enlarged volume since before the initial surgery.

I left the vocabulary lesson and exited the lab room. I could feel the tears taking over my maxillofacial muscles. In an effort to stem the tide of my sadness, I turned to rage and began the internal language dump of the more familiar term that rhymes with the final word of the sign playfully displayed at the doctor's office check-out. 

We have a sense of what is next. But it is scary and it is soon. We have an incredible neurosurgeon, and he and Madeline have an affectionate relationship. But as we look at the next few weeks in light of the eight long days in January, we are afraid, sad, angry, and hopeful. All at the same time. [I was reading Psalm 56 today and find the Psalmist to be capable of holding all of this together at the same time; so here is hoping we can, too.] 

It is likely that Madeline will return to surgery in the next week or so for the second decompression. 

Your prayers sustained us through the last months and we request them for these next days as we make decisions, hold the tension, and walk with Madeline. She has been more courageous than we ever imagined possible. She was describing the situation to friends and to my sister this evening. She was clear and aware of what is ahead. But she is also strong willed and demanding it occur on her schedule. I am pretty sure the outcome of this entire ordeal will be the acquisition of a dog. She created a persuasive powerpoint presentation to this end a few days ago; before the most recent diagnosis. But if a dog is the result of a healthy and happy Madeline, it is a minimal cost.