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Monday, June 20, 2011

We're in California!


In the past week, we've moved across the country, spent 7 nights in the PICU (just as a "let's get to know Charlotte" admission, nothing medically wrong with her), spent 3 nights off of oxygen, met 7 new specialists, changed her CPAP to a VPAP (basically, a vent, without intubation), and discussed two different surgeries.

We've also attended numerous "here, you need to be friends with the other members of your residency class" activities, tried to entertain the big brother (thank.you.San.Diego.zoo), and dropped my father off at the airport and received a reality check (What? You mean we won't be living with Grandparents? But who will watch Caleb?).

Not to mention the 764 phone calls (give or take a few) to insurance companies, medical good suppliers, and nursing agencies. 

This upcoming week, we are looking at a sedated EEG, another echo (they want to look at her heart off of oxygen, to make sure it really looks good, without the effects of oxygen), a roundtable discussion on Charlotte's plan of care, and hopeful a discharge home.

What have you been up to?

Friday, June 10, 2011

What a Difference a Year Makes

June 14, 2010

 Our little miracle has come a long way in a year, hasn't she?

June 10, 2011

Wednesday, June 8, 2011

Under the Weather

Charlotte's a bit sick today, and so I think we all need a "pick-me-up" post. 'Cause I'm oh-so-good at writing those, right?

Peter graduated from medical school this week!  Woohoo! Here's to a few more years of never seeing him :) All jokes aside, we're so proud of his accomplishment. Peter has worked so hard. He's done so much to get here. At a young age, Peter was diagnosed with Dyslexia. In some stroke of luck, Pete's teachers were amazing. They worked in a way that we would all hope teachers would work when our children have special needs. He was held back for half of 2nd grade, attending 1st grade for half the day, and 2nd grade for the rest of the day. During those early years, he would sit up at the teacher's desk while she read him his test and he would verbally take the test. He couldn't read.

In fifth grade, he was able to start reading picture books. He was in special ed classes until middle and high school when he started to mainstream back into "regular" classes. His senior year, when he was in all mainstream classes, he had an instructor who would meet with him once a week or so and go over all his classwork. This instructor would meet with his teachers throughout the week and find out what Pete needed to work on, what tests were coming up, what projects were due.

His school is does not have a large tax base. It's mostly rural, Amish countryside. They don't have large donors, or wealthy incomes to rely on. But they did the best with what they had. They never let him label himself, or allow him to slack off because he was in special ed. They (and his parents!) required him to fulfill his potential. Nothing more. Nothing less. They told him to keep going. To work hard. To find a way that he could learn, and then go with it.

As I watch Charlotte struggle to achieve milestones, or regress in areas that were once strengths, I think of her father. If this man, who hardly had a "normal" course, can walk across that stage, fulfilling his life long dream, then Charlotte can accomplish hers. No matter what holds her back, no matter what "others" may say, Charlotte will succeed.

She may not become a doctor. She may not run a marathon. But she will accomplish anything she wants to. It's not about what I want her to do. It's not about what others say she is capable of doing. If she can accomplish what she sets out to do, then she has succeeded.

And so have we.

Congratulations, Peter. We're so proud of you and all that you have accomplished as well.