Thursday, March 22, 2012

Magic kisses

When Ty is in pain, I offer him my best magic kisses. I stand and i hold him and he folds into me like we are one in the same. I nuzzle him. I walk with him, gently. And I smother him with magic kisses everywhere. Mostly on the top of his head, while I brush back his soft hair - because that's where he hurts - but i cant resist his warm, bare neck either. Pure heaven. He is the most delicious boy. Today was a mushy day at the hospital filled with snuggles and kisses and gentle caresses across his head. Sometimes he tells me my kisses are working. When he told me that today, I know he was only saying that to make me smile. The most encouraging news is that todays CT showed that we can rule out tumor as the cause of his head pain. Thank God. It doesnt matter how recently Ty has been scanned, there is always a fear that his cancer is coming back and it is so aggressive it can happen very quickly. The anxiety I suffered with over the past few days has been intolerable. It certainly doesn't help that I gave up wine for lent! My only source of relaxation. God and I have been sharing some giggles over this, and I think he is happy to see me sticking to my promise (as silly as that sounds). The ventricles in Tys brian were slightly larger since two weeks ago (the ventricles are open reservoirs that expand as fluid builds up in the brain. As they expand, intracranial pressure increases). The official report used the word "minimal" increase, but Ty's doctor thinks that may have been enough to tip him. So, the neuro them has adjusted the settings on his shunt again hoping we will see improvement over the next day or so. In the meantime, we need to stay in the hospital for observation. I know it's confusing, but there are just so many details involving the shunt, the settings, the ventricles and the pressure that it's hard for me to explain. Tonight, he is sleeping well and when awake he feels okay at best. We hope to see improvement tomorrow when I have more energy to explain the shunt settings and why we think that may be the cause of all this. In the meantime, I am missing Gavin like crazy tonight. Love to you all, and thank you for your loving support. Xoxo.

7 comments:

  1. Praying hard for you all. Keep the faith. He is a little fighter!

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  2. I can't imagine your anxiety.

    You and Lou are still the best OBVIOUSLY!

    Don't forget all of the inspiring stories you have heard along the way. Don't forget that somewhere, the highest-of-the-high aspirations for Ty are completely intact and unchanged. That's a fact. Fact 2. I'm really glad I thought of Fact 1 because it feels great to know.

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  3. Cindy-Ty was on my mind all day and heavy in my heart. I had to remind myself to breath. God's blessings. My prayers will never stop.

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  4. I hope you find more answers today and that Ty is comfortable and pain free!

    He is in my thoughts.

    Love & Light

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  5. Ty is in my thoughts and prayers today and will continue to be. I hope that he will gt some relief from his pain today and turn the corner soon. Hang in there. You are an amazing mom.

    Ann from Buffalo

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  6. You are an AMAZING mom!! That's why God sent you Ty & Ty has you!

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