Thank you, my friends, for your prayers and patience with this very unfaithful blogger…
As previously revealed, our Rylee has been experiencing some very troubling symptoms for the past few months, but it seems we have a diagnosis, at last, though what happens next is still unclear.
A couple of weeks ago, Rylee had an MRI to determine the possible cause of her extreme spinal curve. This MRI gave us a detailed picture of the cervical, thoracic and lumbar spine. We waited anxiously, fearful that the orthopedic surgeons feeling that she had a spinal tumor or cyst would be confirmed. The good news: no tumors, no cysts. The bad news: the cervical portion of the MRI revealed that the lower portion of the cerebellum was pressing upon the spinal column, thus causing the troubling curve and most likely the other neurological symptoms that she’s been experiencing. This condition is called Chiari Malformation, and in rare instances causes very painful and sometimes debilitating problems. There is no cure, only treatment and long-term management.
The following day, Rylee had an appointment with a very inexperienced and unprofessional neurologist, who had very little information and not a whole lot of compassion for this little girl’s ongoing suffering. In her opinion, six months wasn’t so very long, though I reminded her that six months in the life of a nine-year old represents a significant percentage of the time she’s been on this earth. Needless to say, we will be looking for another neurologist with actual experience with this condition. Nonetheless, we are so thankful for the wonderful information that we are receiving through support groups and other medical professionals, as we sift through a mountain of information.
Rylee has another appointment with her pediatric orthopedist on December 12th, the Feast of Our Lady of Guadalupe. She will most likely be fitted for a brace at that time, and we are praying that we will be on the path to address the neurological aspects of her condition and will have a more comprehensive treatment plan. At present, she is receiving very little relief from her constant pain, despite medication, though she is as cheerful and good-natured as can be. We had the great blessing of ten days of distraction with the grandparents, Caitlin, Harry and Ben; as well as her beloved Uncle Fell and Aunt Amy. A lovely week of family and fun that lifted everyone’s spirits and reminds us just how precious family time is and the necessity of joyful playtime with the ones we love best. As soon as our last guests left, Rylee’s complaints increased, and she told me that it was so much easier to bear the pain when she was having fun. God bless my sweet girl…
Thank you for your continued prayers. There’s a big part of me that just wants to crawl in a hole and not have to fight and scrap for the right doctor and the right treatment…it seems that it should just be available…alas, that is simply not the case. I’m so thankful for the brief interlude with family, that let us put this aside for a little while, but it’s back to business now. Our good God never places a burden upon us that is more than we can carry, and I’m so thankful for the faith that sustains this family at all times. God bless you, my friends…never, ever take the health and wellness of your children for granted!