August 6, 2017 9:00 pm
Mostly we are in a holding pattern, waiting for Josh's surgery on Tuesday. It will be great when that surgery is done. He will be bald, but it's the last time they will shave his head. (They really should shave his head uniformly instead of just where they cut.)
Josh played a lot of Geometry Dash and Flow on the iPad today. He really did quite well, but when Mary gave him a 4-piece puzzle, he was unable to put that together.
He was a little more communicative today, using a couple of words and a full sentence. When they brought Josh dinner tonight, he grabbed the fork and loaded it up. He does that, but then he can't move the fork from the plate to his mouth. Mary asked, "Do you need help?" He answered, "I think I got it." It was exciting to hear him say that! But he didn't have it, so Paul fed him dinner.
Josh's stats today were high. His heart rate was 137 and his BP was 152/101. His head is so sunken in that Mary encouraged the nurse to call the neurosurgeon about it. Dr. Rubin changed the orders on draining the fluid, so we hope when we return tomorrow it won't look so severe.
We are always apprehensive to thank anyone in our blog since there are so many people to thank. So we hope no one feels offended or left out as we publicly acknowledge a few people. First, thanks to Mary's sister, Liz, and mother, Donna who are dealing with flipping a rental that has extensive work to be done on it. And thanks to her husband, Greg, for saving us money by painting the closets himself. We want to also thank our most excellent neighbors. A few nights ago Josh's cars were vandalized out in front of our house. Our neighbors cleaned up the vandalism today and moved the cars into our driveway. And we would also like to thank those who contributed to Josh's Help Hope Live account.
People say that we are doing a great job with Josh, but we know that we couldn't do this alone. We want to thank those people who are covering our responsibilities while we can't be there to do them. We want you all to know that we appreciate you SO MUCH.
Mostly we are in a holding pattern, waiting for Josh's surgery on Tuesday. It will be great when that surgery is done. He will be bald, but it's the last time they will shave his head. (They really should shave his head uniformly instead of just where they cut.)
Josh played a lot of Geometry Dash and Flow on the iPad today. He really did quite well, but when Mary gave him a 4-piece puzzle, he was unable to put that together.
He was a little more communicative today, using a couple of words and a full sentence. When they brought Josh dinner tonight, he grabbed the fork and loaded it up. He does that, but then he can't move the fork from the plate to his mouth. Mary asked, "Do you need help?" He answered, "I think I got it." It was exciting to hear him say that! But he didn't have it, so Paul fed him dinner.
Josh's stats today were high. His heart rate was 137 and his BP was 152/101. His head is so sunken in that Mary encouraged the nurse to call the neurosurgeon about it. Dr. Rubin changed the orders on draining the fluid, so we hope when we return tomorrow it won't look so severe.
We are always apprehensive to thank anyone in our blog since there are so many people to thank. So we hope no one feels offended or left out as we publicly acknowledge a few people. First, thanks to Mary's sister, Liz, and mother, Donna who are dealing with flipping a rental that has extensive work to be done on it. And thanks to her husband, Greg, for saving us money by painting the closets himself. We want to also thank our most excellent neighbors. A few nights ago Josh's cars were vandalized out in front of our house. Our neighbors cleaned up the vandalism today and moved the cars into our driveway. And we would also like to thank those who contributed to Josh's Help Hope Live account.
People say that we are doing a great job with Josh, but we know that we couldn't do this alone. We want to thank those people who are covering our responsibilities while we can't be there to do them. We want you all to know that we appreciate you SO MUCH.
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