Friday, April 24, 2009

I love my kid's improvements to my face! #fatherfriday

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I love watching by girls enjoying themselves! #fatherfriday

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Saturday, April 18, 2009

Making Gak at #CKK : Elmers glue, food coloring, liquid starch

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Friday, April 17, 2009

Woodworking at Camp Courageous Kids

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Made it Camp Courageous for Kids - #specialneeds weekend for #spinalmuscularatrophy weekend

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Thursday, April 16, 2009

Its a ritual...

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Friday, April 03, 2009

Home at last :D

It is true -- we are home at last. That was the shortest PICU stay we had ever had, and the best! Even in hard times there are "perks" to life. They just tend to be odd perks in our life.

So, Emily has made it through RSV and Influenza this year without being intubated. All managed via BiPAP, Cough Assist, and regimented respiratory therapy/maintenance -- AND while starting school and experiencing a good life for a disabled child. I can't help but
reminisce about the Hopkins Dr's trying to convince us to trach Emily last year b/c she had "No cough reflex whatsoever." The pressure was on us, but we stuck to our guns and I think we're doing well -- nay, I think we're doing better!!

She'll still need some More BiPAP time and her settings are higher; but in good time, and with good respiratory maintenance, all will be back to normal soon... normal for us anyway.

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Wednesday, April 01, 2009

A good night

Diana reports that Emily did very well last night (I'm at home). She's back on room air and things are looking up. Maybe we just had some plugs to take care of yesterday and that was it.

So, we are planning our getaway!

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