Day +73
WBC 10.9
First off, tomorrow (Monday) is Aaron Athy's 2nd birthday. He was leaving Minnesota at around the time we arrived back in July. We met him briefly and saw just how great he looked and we were shown just how good the process can go. It hasn't been the same road for us for sure, but he and his family (especially his Mom) have been so inspirational. They show that it can be done, that these kids do get a second chance and every step forward he makes is one we hope to follow. Congratulations Aaron!
Max is holding his own on the oscillator. He is still bloated and puffed up. His kidneys are working much better, but they are playing catch up now after a few days of gaining weight. His skin is still horribly rashed and even the clearer areas that weren't red and patchy have turned red. His arms and legs are all puffed up. The best word for it is . . . swollen. They were able to turn a few knobs down today and his x-rays have been looking good too.
Last night we had such a nice dinner together and we are grateful for that and for Auntie Bethie coming in so we could be together. At this time, even being 5 minutes away feels too far. It's hard to know how to feel. When the priest left yesterday, he said to Margaret "he looks like he needs to be relieved." And that's accurate. We're hoping that the medicine, machinery, and love that he's getting now offer that relief and that he can stay strong and come all the way back to us. But it's hard to look at him and feel he's getting better. He looks like someone who's being kept alive. And that's exactly what he is. But also, when I put his creams on today to try to help his skin, his arm came up, his little hand rose up, and there wasn't any shaking from seizures, it was just a little wave. I know that he was telling me that he hasn't quit, and I told him that I'm not going to either. As I tell the doctors, I got my medical degree from Dad University, but it still counts. I can't prescribe medicine, but there is one thing I can do for my son and that's not give up.
There was an old door on the floor of our unfinished basement growing up. One day I told my school friends about it and we all wondered if it led to a secret staircase or something. So we all sneaked down with flashlights and moved all the old boxes, tools, and chopped wood off of it, and then with all our might opened the door. And you know what was under it? Nothing. It was the same dirt floor and all the kids laughed at me and I felt stupid. But there was a moment, a split second, where we all believed that we had discovered something amazing. But it was nothing. Just once I hope that happens with Max. I hope that we have hit bottom. I hope that with every x-ray it's just a door, not another staircase down. I hope that one day it's just going to be fear and nothing else. I hope that one day when the doctors look inside, it's just a kid, just a regular kid.
Thanks for checking in on Max, for rooting for Max and for us, and for not giving up.
--mike
First off, tomorrow (Monday) is Aaron Athy's 2nd birthday. He was leaving Minnesota at around the time we arrived back in July. We met him briefly and saw just how great he looked and we were shown just how good the process can go. It hasn't been the same road for us for sure, but he and his family (especially his Mom) have been so inspirational. They show that it can be done, that these kids do get a second chance and every step forward he makes is one we hope to follow. Congratulations Aaron!
Max is holding his own on the oscillator. He is still bloated and puffed up. His kidneys are working much better, but they are playing catch up now after a few days of gaining weight. His skin is still horribly rashed and even the clearer areas that weren't red and patchy have turned red. His arms and legs are all puffed up. The best word for it is . . . swollen. They were able to turn a few knobs down today and his x-rays have been looking good too.
Last night we had such a nice dinner together and we are grateful for that and for Auntie Bethie coming in so we could be together. At this time, even being 5 minutes away feels too far. It's hard to know how to feel. When the priest left yesterday, he said to Margaret "he looks like he needs to be relieved." And that's accurate. We're hoping that the medicine, machinery, and love that he's getting now offer that relief and that he can stay strong and come all the way back to us. But it's hard to look at him and feel he's getting better. He looks like someone who's being kept alive. And that's exactly what he is. But also, when I put his creams on today to try to help his skin, his arm came up, his little hand rose up, and there wasn't any shaking from seizures, it was just a little wave. I know that he was telling me that he hasn't quit, and I told him that I'm not going to either. As I tell the doctors, I got my medical degree from Dad University, but it still counts. I can't prescribe medicine, but there is one thing I can do for my son and that's not give up.
There was an old door on the floor of our unfinished basement growing up. One day I told my school friends about it and we all wondered if it led to a secret staircase or something. So we all sneaked down with flashlights and moved all the old boxes, tools, and chopped wood off of it, and then with all our might opened the door. And you know what was under it? Nothing. It was the same dirt floor and all the kids laughed at me and I felt stupid. But there was a moment, a split second, where we all believed that we had discovered something amazing. But it was nothing. Just once I hope that happens with Max. I hope that we have hit bottom. I hope that with every x-ray it's just a door, not another staircase down. I hope that one day it's just going to be fear and nothing else. I hope that one day when the doctors look inside, it's just a kid, just a regular kid.
Thanks for checking in on Max, for rooting for Max and for us, and for not giving up.
--mike
posted by Mike Ciacciarelli
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