It's been a wonderful whirlwind of a week, full of so many heartwarming emotions. Kelptyn had 3 doctor appointments and he is recovering great. He now prefers to walk all over the house without holding our hands. It's like he has his own sonar system or something. We are starting to wean his steroid dose and he just started a new immunosuppressant to manage his GVHD of the skin. His skin is beginning to clear up. He is showing 54% Tcells and 0% Mcells, currently. However, we BELIEVE Kelptyn is holding on to what he needs to in order to make functioning osteoclasts.
We just received Kelptyn's donor contact information today. But on Wednesday morning, I received a surprise email from Kelptyn's bone marrow donor. This was a day I had wondered about for so long. Her name is KRISTIE! After sending her a response, we were able to talk on the phone and I've been overwhelmed with emotions ever since. As I read about her journey as a bone marrow donor and then after talking to her, some incredible emotions ran through me and continue to do so. Kristie is a wife and mother of 3 children. She is an AMAZING artist and she has a blog of the beautiful murals she paints. She lives a busy life and took the time to give completely of herself for Kelptyn. I was blown away by the generosity of her entire family. Grandma had to stay with the kids, while her husband took her to the hospital to donate, and she had so many people praying for Kelptyn at the exact same time we were praying for her. This was another reminder that life seems to be a perfect balance between science and prayer. On her blog, there is a small profile picture of her. I found myself looking through her blog, but I kept returning to this small picture of her face. All I kept thinking was this is the face of the woman, the Wonder Woman, who loved our son without knowing him. Then I felt a complete embrace of God's love and was reminded of the ultimate sacrifice of Jesus' blood. I thought of how heroic her donation was and how she walks in Christ's likeness. She gave her blood so our son could live. There is no greater gift. When I put Kelptyn to bed that night, I told him that those donor cells he has been internally fighting with have a name....her name is Kristie. I told him all I knew about her and I told him that he needs to be friends with her inside his body because she will help him grow strong. Some how in the calm of his day, right before bed, I think he understood what I was telling him. We look forward to our families parallel lives being intertwined and connected. We hope this is just the beginning of a lifelong friendship.
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Kelptyn's surgery went well. His recovery seems pretty typical so far (only a little bit of blood on our sleeves this time) and he has a great team of doctors taking care of him. One surgeon mentioned that Kelptyn may have been very irritated by the jackscrews more recently because he had developed a fluid filled cyst near them. We are glad they are out. A HUGE THANK YOU to the hospital medical director and the head of Pathology for hearing a bit of our son's story and allowing us to keep 1 out of 2 distractors and 1 out of 4 plates. We couldn't keep the screws because they were too sharp. Kelptyn's blood pressure has been doing okay with the increase steroid dose. He has hours when we are chasing his pain with pain meds and moments where he is a monkey jumping on the bed. The nurses are impressed by our walking 2 year old with eyes that are completely swollen shut. I guess what may be disabling to a sighted child is typical for Kelptyn who is guided by something far greater than eyesight. We are hopeful that he will be able to come home tomorrow. Thank you for your continued thoughts and prayers. |
AuthorI am the mother of a child with a spirit that's larger than life. Each day I am reminded of what a gift the present is. Archives
July 2015
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