Hopkins visit November 2013

Corrigan’s appointment went well yesterday. His ammonia was great (26) and his immune system looks wonderful, however some of his labs came back a bit wonky, showing us that he is growing bone because of big growth spurt and has been running a growing body on not-enough protein. He lost weight but grew more than expected, so this might explain his tiredness in the middle of each day.

I don’t take photos each Hopkins visit, though I do try and grab one window shot each time for my collection.

window collage
(A few from 2013)

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Corrigan was so well-behaved, it was just he and I on the road for this trip, and I couldn’t have asked for better. He looked so grown-up yesterday so I took a few shots with my cell phone along the way.

(all photos edited with my favorite app for iPhoneography – PicTapGo!)

photo (98)
(in the waiting room on the 9th floor)

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photo (100)
(The breezeway at the new Children’s Hospital)

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photohopkins
(Playing “I Spy” with the artwork on the wall)

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photohopkins2
(pondering his world, I suppose)

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While editing these last night, I came across the following photo of Corrigan in an elevator.  It made me tear-up to see him standing there so anxious. He was very tight-lipped all afternoon, though still very brave, and very few smiles.  He is getting a great handle on his behaviors that typically manifest in a hospital setting, the last few visits have been perfect, but he is still so worried each time.

I wrote the following on Facebook…

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It isn’t fair, you know. And yes, life isn’t always, but kids with chronic health issues really never do get to let down their guard. For Corrigan, an elevator ceases to be a fun “ride” but instead becomes a portal to something that hurts. An ambulance siren makes him flinch. A too-tight hug reminds him of being restrained. I took a lot of photos today while he and I were in Baltimore, and the worried brow in every photo…those clenched hands…the way he hesitated before rounding every corner. It just isn’t fair. This life has been so hard on my sweet boy but I’m so very proud of him. I’m proud because he still steps on the elevator, and rounds every corner and squares up his shoulders against his fears. He is a warrior in the face of worries a child should never know. As are all children who walk this same path. God bless them, every one.”

2 thoughts on “Hopkins visit November 2013

  1. That last passage you wrote hit right at home. Our kids go trough so much, yet they have so much joy. Edwin is only 2 1/2 but he has already started to accept going to the hospital, but blood draws and excams are another story….
    You should all be proud of your selfs you are an amazing family

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    • It is sad that kids like Edwin and Corrigan have to get used to such a life, but they teach us so much, don’t they? It is hard to feel sorry for myself when I see how strong and brave Cor forces himself to be for a needle poke. We all do what we need to do!

      Like

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