This week, we had different news, and I am reminded that we are still dueling with Sturge-Weber Syndrome for the upper hand, and we always will. A visit to the glaucoma specialist revealed that the second eye drop we added to try to control the pressure in her left eye has failed. If you are unfamiliar with glaucoma, it is increased pressure in the eye caused by too much fluid, which can damage the optic nerve and lead to vision loss. It can be controlled but not cured. Angela's doctor added a third eye drop and we will check in with her in two weeks. If this treatment fails, we will be considering another surgery. The vision exam also revealed that Angela's vision is significantly decreased in her left eye so we will be seeing her vision specialist on Tuesday. She has been taking her glasses off a lot lately, so it all makes sense now.
Yesterday, we had an appointment with "Dr. Steve". Dr. Steve is a physiatrist and he has managed Angela's care since her time in inpatient rehab after surgery. We made the appointment because we were concerned about pain and tightness in Angela's wrist and shoulder. I figured it was probably time for another round of botox injections, which brings temporary relief. Dr. Steve agreed with me, and after examining our ever-patient, yet sassy girl, he said that she is developing a contracture in her ankle, which is "a condition of shortening and hardening of muscles, tendons, or other tissue, often leading to deformity and rigidity of joints." Contractures are not something to mess around with. He will treat her ankle with botox injections, followed by serial casting, which is a series of casts which stretch the muscles over a period of weeks. After the casting, we will discuss long-term spasticity management for her to prevent contractures. More disappointing news.
It has been a rough week. As always, though, Angela has approached the news with her usual style of "Life is an Adventure!" so we will try to do the same. Because it really is, after all.
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