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Category Archives: Uncategorized
Divine
Lately, I have developed a new mantra: “All things are divinely timed.” When we were stuck in traffic on the interstate on our way to the ortho appointment Monday, where the doctor had rearranged her schedule just for us, I reminded … Continue reading
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Mysterious
We had our first ER visit of 2015 this week—on Easter, in fact. (Of course! What would a holiday be without some health scare, amiright other parents of special needs kids?) When we were sitting in church in the morning, … Continue reading
Retinitis Pigmentosa
Retinitis Pigmentosa is a blanket term for a group of eye disorders that cause gradual, progressive vision loss. It usually starts in adolescence and affected individuals are legally blind by age 40. Generally, people with RP lose their night vision … Continue reading
Rant
No one thinks America’s health care system is perfect. People argue on every side of every issue about the flaws in the system. Personally, our family has benefited from the Affordable Care Act, and I am very grateful we have … Continue reading
Precious
Amazing Grace, how sweet the sound that saved a wretch like me! I once was lost, but now I’m found. Was blind, but now I see. ‘Twas Grace that taught my heart to fear, And Grace my fear relieved. How … Continue reading
Four Months
Gracie’s last dose of antibiotics was on October 17. She has made it four months and about a week, which is either her longest stretch ever or her second-longest. When she was 8 months old, she got RSV, which turned … Continue reading
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Tagged antibiotics, cellulitis, infection, osteomyelitis, pylonephritis
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Mourning
This past weekend, Gracie and I attended the funeral of the little boy whose sister goes to the school that kicked Gracie out last fall. It was heart-wrenching; those poor parents look haggard, as to be expected, and there is … Continue reading
Loss
When Gracie was at the school for blind kids, she had a classmate who also had significant medical needs in addition to being blind. I always felt extra-connected to her mom, because we both knew what it was to have … Continue reading
Puddles
Gracie is doing amazingly well lately. In fact, she’s thriving. She is doing great at school, she is learning to write and draw (she drew her first-ever stick figure family the other day), and she is getting stronger and stronger. … Continue reading
Brave
We had our first doctor visit of 2015 yesterday. I had texted with Gracie’s pediatrician Saturday because the wound on Gracie’s index finger, where she pulled out her little stump of a fingernail, started to look like it had exposed … Continue reading
Amazing Gracie 