A place to share updates, progress, pictures, and prayers for our son,Isaac, as he fights Spinal Muscular Atrophy.
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Thursday, October 15, 2015
Archives: 6/20/2014 Hiccups
Posted Jun 20, 2014 5:42pm
Isaac has the hiccups. It's just so darn cute when he has the hiccups. I once took a video of him, staring off into space, hiccupping. It was at least 30 seconds of just that. I sent the video to my sister, Kara, because I knew she would be as amused as I was. I will miss seeing him hiccup. I will miss seeing his scrunchy face that he makes when he's sleeping and needs to squirm a bit to get comfortable. I cry at least once a day, and last night I cried giving Natalie a bath. I cried because I know, unless we are granted a miracle, that I will never get a picture of my two kids playing together in the bathtub. I cried because I know Isaac will never build a block tower. I walked past the elementary school baseball diamond on my way to the post office, and I cried because I will never watch Isaac play little league. It's a daily struggle, remembering to focus on today, to refuse to focus on the impending loss. I mean really, he may never have wanted to play baseball anyway. Jeremiah and I remind ourselves and each other that Isaac isn't sick with something. Nothing is attacking him, he is simply being who he was designed to be. He is fearfully and wonderfully made, and he was made in a way that we describe as SMA1. He was created to go to God sooner than we think is natural, sooner than we will ever be comfortable with, too soon.
I read a quote the other day that gave me some peace, by a Dr. Rachel Remen. "Healing may not be so much about getting better as about letting go of everything that isn't you- all of the expectations, all of the beliefs- and becoming who you are."
Yesterday, Isaac did three sessions off his bi-pap, and he tolerated it well! So this morning, he got to try the high-flow nasal cannula at 7 liters of oxygen (down from 8). This evening, we're going to see how he does at 6 liters. As he progresses, the pulmonary team will decide when he's low enough to leave the PICU and head to a regular floor. He has been in a great mood today, smiling at everyone who comes in, laughing at Grandma, and sleeping well at naptime.
We continue to be amazed and so grateful for everyone's generosity of spirit as we get through our days. Every prayer, note, visit, meal, donation, toy, card, kind word, and hug is appreciated, and nothing has gone unnoticed. Thank you!