Here is the latest update from Scotts sister this morning. Also, she is requesting that anyone wishing to visit to please contact her. Sorry it has been a week since I last updated - I will get you caught up and then try to keep current. Medical first: My last post Scott had gone to the emergency room on Monday 14th in the am and was released this past Saturday 19th. When he was admitted last Monday he did not have use of his left leg and by Tuesday he could not use either legs. They put him on several meds which at this point I dont recall specifics but definitely steroids and pain, they also put him back on his BRAF-MEK to manage his symptoms. Scott and Miranda worked with hospital staff to put together a hospice plan which at this point means Scott is at home with a hospital bed on the main floor and visiting nurses. He is regaining some feeling and use in his legs and yesterday could walk with the assistance of a walker. So it is a bit of a roller coaster (my terms not medical) as Scott physically is weakening but mentally is stronger than he has been for the last couple of weeks. He is awake more of the day, more alert, more conversational, his train of thought and verbal skills are much stronger. Visitors: Scotthas had an influx of visitors which THANK YOU!! He so enjoys family and friends as it lifts his spirits immensely. Jason and his son Alec visited then JoAnn & Tom, then Aunt Linda, Uncle Jim, Kelliann and Jamie, then Uncle Jim H., Jenny & Mike. Then the usual suspects Ellen, Dick, Bob, Eileen, Don, Julianne & Samantha. Steve, Stef, Ian, Luke and Maddie were also there for several days. Steve literally whipped together a ramp for their front door to make it wheelchair accessible in an hour before he left. THANKS to both Steve and Bernie who supplied the tools!! This past Friday while still in the hospital Scott spent time with Miranda, myself, Don, Steve and then Mom & Dad later in the day working on a voice recording project. We are asking him questions/memories which we are being recording - thanks to our dear friend Sarah who sent a wonderful book - All About Dad that we are using for questions as well as some of our own. We did start that project and for those of you who know Scott well you know the phrase short story does not exist in his vocabulary so it is an on-going (love ya Scott but you know its the truth). The CIRCUS - they had tickets to take Oliver to the circus and Scott was determined to go. When he was released from the hospital they arranged for the transport to take him directly to the circus a couple miles from the hospital and then home afterwards. So memories were made this weekend!! Kai: He had his MRI and there were no new findings or breakthroughs from it but they have another baseline and nothing has changed which is positive. They are going to continue to tweak his meds and/or try some new ones to attempt to find the magic formula. A test that no one was willing to try until default - He came out of a seizure all by himself last week. He was with Eileen and had a seizure in his car seat so by the time she got him out and in position to administer meds he had pulled out of it. For those of you praying here are some specific prayer requests: • Please pray for Miranda as she is not feeling well and extremely exhausted. •They were approved for Social Security and received their fist payment but just got a letter in the mail stating that now Scott is no longer eligible for Mass Health due to income level which would result in skyrocketing medical bills. Miranda is making phone calls today to try to resolve. •BRAF-MEK medication he only has a couple days left and it is suppose to automatically renew and be sent via mail but they are having the same problem as last time in that it doesnt ship and Miranda is having to make phone calls about that as well. •They also need to start talking more with Oliver about what is going on. •Wisdom in knowing both what to do & what resources are available for Scott.
Posted on: Mon, 21 Oct 2013 15:02:43 +0000
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