Saturday, July 13, 2013

The mysterious blogger

My laptop is being slow again so I'm going to try blogging the fast way with my phone. Isaac is having a fantastic summer chillin' with his big screen TV, going to the park, pet store, snuggles with sister and family BBQ's. Yesterday my Aunt and Uncle came up from California and they had a good time seeing us and Mr. Isaac. 

There have been very few appointments lately other than Pulmonolgy and Opthalmology, with some very good reports with both appointments. We discontinued another nebulizer treatment he's been on for years and they are talking about weaning him off the Bipap at night. Some complicated things about weaning would mean going to Seattle Children's for a sleep study. That's not happening anytime soon because we have plans to take Autumn up to Canada for a whole week the end of August. Maybe we will revisit that in the spring. 

The eye appointment was a relief. There have been speculations that Isaac could have a retinal disease. At an appointment 4 months ago they got me pretty worked up about how serious this could be. There was some talk about having a test done at a hospital in Portland that specializes in eye diseases. The appointment a few days ago concluded that there has been little to no change in the pigment of his eyes. Rather he was born with abnormal looking eyes likely because of his disorder, however the doc thinks he either doesn't have an eye disease or a very mild one that would progress very slowly. When asked if he would ever lose his site she said that would be very unlikely. Whew! He could have trouble seeing color right now, but we don't know that. What we know right now is that he's direct when he sees us, the TV etc. so whatever may be going on with his little eyes hasn't effected him much. We go back to the ophthalmologist every 3-4 months to see if there's any changes. As many know we've been kicked by a mule quite a few times with news about Isaac's health. We try not to take things too seriously anymore because it has always worked out the way it was meant to be. As long as he's enjoying life and being loved that's all that matters. 

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