Teething

I believe Gesina is teething. For the last two weeks she has had days where she is pretty much inconsolable. If she's awake, she's crying and I have to hold her. I love holding her except when she turns and wails directly in my ear. Here's the face I see when she's wailing in my ear:

And note that her outfit has a crab on the side... I love how witty I can be with baby clothes! I can make a statement without ever having to say a word ;-)

Last week was the first week Gesina didn't have a doctor's appointment. We didn't know what to do with ourselves. This week we see the neurologist and her regular pediatrician. As usual, right before her neurology appointment some odd neurological incidents occur. On Friday she started looking up and her eyes rolled back. It was REALLY quick but it happened and I don't know if it was a seizure or not. On Sunday, she was the "Gesina Monster" all day and I had to wake her up to give her her meds before I put her to bed. When I woke her up, she was "looking" around VERY wide-eyed. If I didn't know better, I'd say she was looking around like she could see for the first time or that she was overwhelmed with sight. To make it more unique, her eyes looked like they were going a little cross-eyed. By the time I got the camera on my phone on her, it all stopped. I blew in her face to see if she was responsive and she was.

My current focus is on teaching her to see. We've gotten her to eat (she takes about 5 ounces each bottle now!) and now we've got to get her to see. I've been doing a lot of research on cortical visual impairment. It is the leading cause of visual impairment in first world countries today. These babies didn't used to survive and because of technological advancements, they do survive. So Gesina's eye structures are normal, but the visual pathways in her brain are effected by the stroke. In other words, her eyes provide pictures but her brain can't interpret them for her. To build that connection she has to slowly learn to see and make sense of what she sees. Unfortunately, teaching her and other babies with CVI to see is such a new phenomenon (the first assessment tool was published in 2007), that I'm going to have to make it up as I go. Eye doctors, vision teachers, etc. are not all in agreement that CVI is a real phenomena that is even in their purview so using the 2 or 3 sources I've found, I need to be creative. In my research I've found that one of the more promising approaches is... using CVI friendly apps on an iPad! So yes, Gesina will be a 7 month old with her very own iPad with a military grade case to keep her slobber from ruining it :-D I think her vision teacher will be somewhat helpful but she has said there is no rush to get started teaching Gesina to see... according to my research on CVI, there is a window of opportunity and the range of it varies from 2 months up to 6 months of age (and we'd have already missed it if this is true) and according to another source, up to 10 years of age. This makes me a little leery of the amount of help I'll get from the vision teacher.

I'm coming around to accepting the fact that Gesina doesn't have milestones like other babies, she has "inch"stones. There will be no day when I wake up and "it's like she's a whole different baby." Gesina's inchstones don't work like that. Every advancement is hard earned so far (teaching her to eat, to calm herself, to deal with her acid reflux, and now to see), and I may just smack anyone who says anything will just happen one day. Further, when she does reach a typical milestone (rolling), she does it once and never does it again. I've stopped watching for milestones altogether as it is an exercise in futility and emotional turmoil. What I do know is if I live in the present and not extrapolate to her future, I'm better able to deal with her challenges. I can see her for who she is and appreciate that. For example, she is so adorable that she has a toddler at daycare that visits her everyday. The toddler has to see "the baby" so Gesina already has a fan club. She doesn't smile and coo like other babies, but she has a big enough personality without all that that she has a fan. That is pretty neat.