Saturday, June 16, 2012

Home Again, Home Again, Jiggity Jog…

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We are happy to be home and happy that Lucy is doing better, but disappointed that I was unable to attend a majority of the UMDF’s Annual Mitochondrial Medicine Symposium this year.  However we are very thankful that it was held so close to home for obvious reasons.

After 24 hours of cooking time Lucy’s line cultures are negative for growth of any bacteria.  We were discharged tonight with orders for IV antibiotics to treat her ear infection. If anything changes they will call us and let us know.  Lucy’s temps are back to her norm, which indicates to all of us that we are on the right track. 

We joked that Lucy actually had something normal, but our attending also had to point out that she is a bit delayed in this area, as most kids suffer with ear infections much earlier in life.  I’ll take a delayed ear infection over a line infection any day.  Yep, that’s just our reality.

Thanks as always for your love and support, thoughts and prayers.

Yesterday and today…

We were here,

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running to and fro

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on Capital Hill.

We were lobbying with the United Mitochondrial Disease Foundation, meeting with our representatives and senators asking them to support legislation for primary mitochondrial disease research .

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And tonight, we are here,

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at the “hotel” DuPont, admitted for fevers and an occluded line, Lucy decided to throw that in at the last minute to make things even more exciting.  We left DC abruptly this afternoon when Lucy’s temps went above and beyond our cut off for fever.  Cultures are cooking, labs were drawn, urine collected, and an ear infection detected in her right ear.   Her line has been TPA’d and is flowing like a river once again, but I will have to let you know about her cultures sometime tomorrow.  Please pray for “just” an ear infection and for negative cultures. 

Friday, June 8, 2012

Summertime…

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It’s official, today is the first day of summer vacation for our kiddos and you know what, every day of the school year we have to wake them at 7:15 am but not today, nope they all (except for Megan) woke up on their own before 7:15 am.  Last night I announced that there would be a major incentive given on the last day of summer vacation to anyone who makes their bed every morning, does their morning jobs every day, keeps the bathrooms clean, helps with the laundry, makes every effort to help one another out and not get out of helping one another…and on and on, maybe I should have added sleeps past 8:00 am.  Every year since Jack was a wee little one we created a “summer fun list”,a list of fun, fantastic, wild and crazy, and not so wild and crazy ideas that we wish to accomplish over the summer and this year is no exception.  Some years we get to everything on our list and then some, and others, like last summer, were only half completed, it’s ok.  I really enjoy the process of making the list the most, I love to hear what the kids desire, it’s usually the little things that they wish to do, although going to Disney World always gets suggested.

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Lucy woke early, which is not unusual for her as of late, I am beginning to wonder if she secretly enjoys watching the sunrise.   Yeah, she is waking that early.  The moment she heard the girls bedroom door open she started calling for Sophie.  Before Sophie went into Lucy’s room she came in my room with that I just woke up look, smiling, and told me she made her bed already.  Oh this is going to be a fun summer, who doesn’t like an incentive.  Lucy’s world revolves around when the kids are going to be home from school, her little mind is going to explode when she realizes that they are going to be home every morning.

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As usual we have had more than our fair share of medical issues, appointments, therapies…I will write an update about all of those in another post soon.  As for now, I must attend to the sister war that is ensuing in Lucy’s room over the alphabet I believe.  Here’s to the first day of summer vacation…enjoy!