Wednesday, August 5, 2009

Groundhog Day

Is Groundhog Day in February or is it really in August and no one told me they changed it? I feel like I awaken with a plan and in ten minutes, that plan and about four others are shot to pieces and I simply end up hanging on to a very thin rope with a fraying knot at the end and praying that it holds til the end of the day.

Top it off with Will starting a cold, at least I think it's a cold. He's really stuffy and now he's tachycardic. We have an appt with Dr Teasley at MCV tomorrow afternoon...which either gives us time to get through the ER before seeing her, or he miraculously feels better in the morning and we can work on my first plan for the day...or not. :) He's becoming lethargic and dizzy and... Welcome to mitochondrial disease! The new normal is a weekly ER visit.

Which brings us to the new dilemna...with weekly infusions (IV fluids), the recommendation of a port is going to become a topic of discussion. Do we put in a port or do we not? Given a mito patient's issues with infections (their bodies don't handle them well), will a port help or be yet another problem? I remember when the decisions were along the lines of, "Do we sign them up for soccer or baseball?" Those were much easier decisions with lots fewer consequences.

We still have Chloe, who has decided that I really am not a potted plant, which, btw, is very cool. She gave me a huge hug this morning and actually took her bath this evening without screaming! Chelsea called and asked if we wanted her to pick her up tomorrow, and I am like, "Um, I just bought her soy yogurt and almond milk and I got a vegan cookbook from the library (ok...Billy picked it up!), so maybe by Sunday??? :) However, she may eat Fredericksburg out of blueberries, so she may have to head to Charlottesville at that point. The child devoured a pound of them at lunch! We have to hide the blueberries or she will eat all four pounds in one sitting!

So, it's been a long week. I have my granddaughter which is a silver lining. Will is unwell which is a huge cloud around that silver lining. But the kids are sleeping, Andrew is on his way home, and I am heading for bed! Before midnight!

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