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gnu Jane's Rainbow: for all needing support & comfort (6581* d) RE: Jane's Rainbow: for all needing support & comfort 13 Mar 19

March 13, 2019
Journal entry by Janie Endres 4 hours ago

Hello All,

A bit of an update regarding Amos, provided with his permission. He says to say he would post himself but his 'puter is on the blink. He also won't know, until his computer is fixed, how well he can manage the keyboard as fine motor skills are still a work in progress.

He is at home and is continuing recovery efforts from his severe concussion. To those of us around him, he progresses by leaps and bounds. To Amos, the progress seems frustratingly slow. In-home speech, occupation and speech therapy have been discontinued and there is serious slogging through bureaucracies going on to get outpatient therapies scheduled. His speech is clear, and he has made very significant progress on syntax, inflection, etc. Struggles sometimes to find the right words to use - but this amazingly articulate human being is already more articulate than most of us, even if not back to his prodromal levels.

He is able to sing - pretty well in imho, but not up to his own standards, and working at making some strumable chords on the guitar. Still needs a walker because the internal gyroscope still ain't working right, but there definitely continues to be improvement. Fine motor skills have a ways to go, but again, definitely continuing to improve.

Although fatigue can be an issue, and rest and naps are very important to promote healing after brain injury, he enjoys company and outings. He thinks he is a pain to take somewhere because of the walker, but, believe me folks - that is his imagination. He needs the walker for balance, not because his legs are injured and can't bear full weight. It is a piece of cake to chauffeur him to a local restaurant or coffee shop for an outing, as long as the steps can either accomodate a walker, or there is a sturdy handrail - though, for local folks, I would not recommend lunch at the Saratoga Grill at this point, with their full flight of stairs.

In terms of the cancer, he had a full scan a few weeks ago, and the cancer is 'stable.' No new metastases. Of the already present metastatic lesions, half have shrunk a little and half have grown a little. At present, focus continues to be on recovering from the concussion. Any decisions regarding further experimental treatments or clinical trials are deferred.

There some ways that local friends can help support the family.

1. Take Amos or Daly out to lunch, breakfast or dinner. Separately, so they get a break from one another. If taking Daly out, good idea to make sure Tucker is home, or that some one is there to keep Amos company. My schedule is somewhat flexible, so feel to call me to see if I can come visit Amos if taking Daly out. 919-259-5079. I do work part time so some pre-planning is helpful. Amos doesn't generally need assistance, but he knows he is still physically vulnerable and it can be a bit nerve-wracking to him to be home alone. If staying with Amos, take a book, in case he decides a short nap is in order, and make clear you are perfectly comfortable not being entertained if he needs to nap.

2. Invite yourself over for a meal with the family, and either bring the meal with you, or fix it in their kitchen. Lunch or dinner, or even a brunch!

3. Bring a meal over that can be heated up. Check with them first so they don't get overloaded with brought in food. Most local folks know that Amos loves meat and potatoes, especially beef or buffalo, or ham, but is not averse to sauted chicken breasts with a savory glaze. No seafood for Amos, but Daly loves sushi!

4. Amos has a lot of doctor appointments right now. Check with Daly to see if you might be able to take him to an appointment so she can have some time at home alone.

Once outpatient therapies get scheduled, they will probably occur on a routine schedule, and I will set up the planner (see above links under ways to help) for folks who have time during the day who might be free to take him to PT/OT/ST.

5. Just go visit! If you are a musician, bring your instrument, hand Amos his guitar, and go to work!

6. I'll reiterate - get Daly out of the house, just make sure some one is staying back at the house.

Thanks for reading, and thanks for caring.

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