Isolation

I never really understood how isolating having a child with special needs is. I mean, having a baby is isolating in and of itself. You cant go out much because its a big affair, the weather dictates (too hot/too cold), but with Charlie I am paranoid about her getting sick. I think most of my friends are paranoid about getting her sick so they don't come around much. Which is appreciated but it still makes me sad. I was  am a social person, so not talking to anyone or seeing anyone all day is really hard. I think a lot about what I had planned and how different this life I am living is. I did not want to be a stay at home mom. No offense to those who choose to, but I do not like being at home all day. I worked so hard to get through law school, pass the bar, internships, countless hours perfecting my writing skills, it would make sense that I would want to make use of all that. I miss adults, conversations, critical thinking, writing, helping others, etc. Charlie brightens my day and helps me get through it but this is not how I imagined things going.

Charlie's metabolic appointment went well. Her oxaloacetate is apparently helping her and a lot of her organic acids went down. Problem is her hemoglobin went down too. Maybe...I am suspicious of that test. She is acting great, lots of energy, breathing fine...etc. I don't think that would be the case with a hemoglobin of 8.5. We have a date for the Gtube surgery at the end of July, I'm just hoping that it all goes smoothly. Hopefully we get her anemia figured out by then. One thing after another, it never stops.