December 17, 2017
It's been another two weeks since our last post. It was a rough two weeks for Team Josh -- maybe the first time in this nearly six-month ordeal where we felt like Josh regressed. Things are looking a bit better as we type this but we'll have to see if that trend continues.
Two weeks ago we were in a four-car accident while visiting family in Washington, DC. We were on the freeway on our way home from viewing Christmas lights at the temple and ran into the car in front of us. We were then rear-ended by the car behind us. The poor car didn't survive the accident but all four passengers got away without any serious injuries. Josh was sitting in the front passenger seat and somehow managed to break his glasses, but he seemed to be just fine.
But by Friday of that week (over a week ago now), Josh was exhibiting some signs that he wasn't doing well. His stomach seemed to be discolored and distended, which could be a sign of internal bleeding, and his nose was running relatively clear liquid, which could be spinal fluid, a problem Josh has had before. His behavior seemed to regress a little too, including exacerbated initiation problems and continence issues. We were a concerned so, on the recommendation of a chiropractor Josh saw that day, we took Josh to the ER to make sure all was well. After an examination that included a CT scan, the doctors said he looked fine. Since then, he seems to have improved a little but we probably aren't back to where we were two weeks ago yet. We have an appointment with Josh's neurosurgeon PA tomorrow morning.
We still have a problem with Josh's lips and fingernails turning blue. This happens because Josh gets cold so easily (lack of brain regulation). He seems to be getting enough oxygen, but his core temperature drops. When he turned blue three days ago, Mary quickly took his temperature. It was 95.3. The doctor said to take him to the ER if it drops below 95. We have to move quickly to warm him up whenever we notice this phenomenon. And we still can't get him to put on weight. He lost three pounds since our last report. We keep thinking (always hoping) that we are beyond the medical issues, but they keep cropping up.
Last Wednesday we were told by Josh's therapists at PRA that they were dropping Josh from their program. This was both surprising and disappointing. Our agreement with PRA concluded Josh's therapy at the end of December and was expected to begin again in January (when our insurance benefit renews). But the professionals there told us that Josh's memory and communication skills weren't good enough for him to transfer skills learned in therapy to home, which defeats the point of the therapy. They recommended that we look into either in-home or in-patient therapy. So we are now looking into those options and hoping to start something new for Josh in January.
On the positive side, Josh FINALLY got his new glasses. It took about a month to get them made, as they are quite complicated, including prisms that help to bring his right eye vision into alignment. For the first time since the accident, he now has a real prescription that includes lenses for both eyes. Here's a photo.
We have been blessed by a number of neighbors -- mostly church members -- who sign up to spend an hour or so in our house helping Josh with his therapies. We deeply appreciate this support. Josh seems to enjoy it too. Here's a photo of Josh working on a gingerbread house that one church friend brought over. He worked on this -- completely on his own initiative -- for a good two hours after she left, so we think that's a true sign of enjoyment.
Here's a photo from our trip to Washington (before the new glasses).
It's been another two weeks since our last post. It was a rough two weeks for Team Josh -- maybe the first time in this nearly six-month ordeal where we felt like Josh regressed. Things are looking a bit better as we type this but we'll have to see if that trend continues.
Two weeks ago we were in a four-car accident while visiting family in Washington, DC. We were on the freeway on our way home from viewing Christmas lights at the temple and ran into the car in front of us. We were then rear-ended by the car behind us. The poor car didn't survive the accident but all four passengers got away without any serious injuries. Josh was sitting in the front passenger seat and somehow managed to break his glasses, but he seemed to be just fine.
But by Friday of that week (over a week ago now), Josh was exhibiting some signs that he wasn't doing well. His stomach seemed to be discolored and distended, which could be a sign of internal bleeding, and his nose was running relatively clear liquid, which could be spinal fluid, a problem Josh has had before. His behavior seemed to regress a little too, including exacerbated initiation problems and continence issues. We were a concerned so, on the recommendation of a chiropractor Josh saw that day, we took Josh to the ER to make sure all was well. After an examination that included a CT scan, the doctors said he looked fine. Since then, he seems to have improved a little but we probably aren't back to where we were two weeks ago yet. We have an appointment with Josh's neurosurgeon PA tomorrow morning.
We still have a problem with Josh's lips and fingernails turning blue. This happens because Josh gets cold so easily (lack of brain regulation). He seems to be getting enough oxygen, but his core temperature drops. When he turned blue three days ago, Mary quickly took his temperature. It was 95.3. The doctor said to take him to the ER if it drops below 95. We have to move quickly to warm him up whenever we notice this phenomenon. And we still can't get him to put on weight. He lost three pounds since our last report. We keep thinking (always hoping) that we are beyond the medical issues, but they keep cropping up.
Last Wednesday we were told by Josh's therapists at PRA that they were dropping Josh from their program. This was both surprising and disappointing. Our agreement with PRA concluded Josh's therapy at the end of December and was expected to begin again in January (when our insurance benefit renews). But the professionals there told us that Josh's memory and communication skills weren't good enough for him to transfer skills learned in therapy to home, which defeats the point of the therapy. They recommended that we look into either in-home or in-patient therapy. So we are now looking into those options and hoping to start something new for Josh in January.
On the positive side, Josh FINALLY got his new glasses. It took about a month to get them made, as they are quite complicated, including prisms that help to bring his right eye vision into alignment. For the first time since the accident, he now has a real prescription that includes lenses for both eyes. Here's a photo.
We have been blessed by a number of neighbors -- mostly church members -- who sign up to spend an hour or so in our house helping Josh with his therapies. We deeply appreciate this support. Josh seems to enjoy it too. Here's a photo of Josh working on a gingerbread house that one church friend brought over. He worked on this -- completely on his own initiative -- for a good two hours after she left, so we think that's a true sign of enjoyment.
Here's a photo from our trip to Washington (before the new glasses).
And here's a great picture of Josh and Heidi after decorating our Christmas tree (also before the new glasses). We appreciate the support Josh continues to get from Heidi, Alicia, and Passion (his previous roommates). They come over nearly every week to spend time with him, they took him to Alicia's work party so that he could enjoy the Christmas festivities with them, and they bring him little gifts to remind him of their love. They planned to take him to zoo lights, which seems it might not work out, but we are grateful for their thoughtfulness and their efforts. They put a lot of time in thought and action on his behalf. They are very sweet. We love that they genuinely love him.
Thank you for this update... I love knowing how he is doing...
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