This will be random and disorganized, as I have a few different items to share. Bear with me!
Aimee is recovering steadily. Last night I got a glimpse of her sweet little knowing smirk. How much I love those moments of connection! Now that this sickness is moving into history, I can update about the appointments and meetings we had two weeks ago.
Ophthalmology clinic: One of our least favorite. They are notoriously difficult to schedule and consistently take several hours for a simple clinic visit. This is that same department that without warning put Aimee and I in a dark room, strapped a large camara to her head while they spun us around in circles in a chair as a screen of lit stripes displayed around us. It is a place of horrors I tell you.
Although I scheduled the appointment to further discuss Aimee's frequently infected and constantly seeping eyes, they retested her vision. When I say they retested her vision... I mean they took giant flashcards and whipped them quickly around in front of her face. No offense to ophthalmologists. I am sure for a typical kid with a vision impairment, their methods would be successful... For Aimee... You could hardly do worse. The doctor commented that her eye movements seemed random and uncontrolled. To me it seemed that Aimee was trying really hard to look at the flashcards, but with it only being left for a half a second in each place, she was always two steps behind.
Based on a test (VEP) done when she was an infant, they feel that her vision itself is decent. They were able to determine that the information travels from her eye to the vision cortex. The output, however, they see as completely sporadic at best. Admittedly, she does not have a lot of control over her muscle movements. Similar to the other parts of her body, she does not do well coordinating the information her senses provide with appropriate responding movements. The doctor claimed that she had no control over her eye movements at all. Really I don't think that they give Aimee enough credit. She may be very limited in her control, but she does have some ability. At the very minimum, she tries really hard and deserves the credit for that.
Pulmonary sleep clinic: They were very impressed with her average of 5 hours a night on bipap. A little curious about our other sleep arrangements (ie. weighted blanket). :) Not all doctors are willing to think outside the box.
School: Aimee's IEP meeting was fun. How often do those words happen together? I'm guessing it is rare. Because we have declined most of the available therapy options, our meeting was only attended by one therapist, her teacher, and us. All people who love Aimee, who delight in her. It was really fun to hear them excitedly discuss their times with her. Our primary conversation was about the transition to kindergarten this fall, which means a new school, new teachers, new nurse, ect. Hoping to go visit the class soon.
Tomorrow is Aimee's big day! She already got to open one present-an iPad holder that clamps onto her chair. Just in this last two days she has gone from occasionally looking at the screen to focusing on it and even touching it with her right hand. FUN!
PS. I am still finishing up her books and would love to have your birthday wishes or note included. If you haven't yet sent it over, please do so by Friday! (edr2005@gmail.com)
