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May 12-18

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I know many of you have been wondering how Steve is adjusting to the rehab facility.  From what I have been told, it is definitely a huge improvement.  His room is spacious and without all the equipment and monitors and noise of the hospital room.  I haven't had the opportunity to visit, but Jimmy was able to stop in yesterday and was impressed.  Steve's sense of humor is definitely intact and he has bonded with some of the staff members quickly.  Not to the point where they will sneak him in an Old Fashioned, as he has requested a few times, but you know Steve will continue to ask!

Progress has been made in using some of the technology that none of us even knew existed on an iPhone.  Jack enabled a setting that allows Steve to toggle through his favorite contacts on his phone.  It sounds as though it will allow him to touch the screen and Siri will call out names.  When he finds the one he wants, he can then place a phone call.  It has definitely been helpful for him to keep in touch.

Being able to shower regularly, wear normal clothes and sit in normal chairs has been a huge improvement as well.  While being at the facility isn't like sitting in the comfort of your living room, it is definitely better than the hospital.  There are planned activities that he can attend as well and the overall atmosphere sounds upbeat and positive.

Since the beginning of this whole ordeal, I have been sharing news from Alex, and most updates included something about the lack of a reliable prognosis.  They have been told that it is hard to really tell until there have been several weeks of consistency/lack of additional progress.  While it is not an exact science, the professionals believe that the progress Steve has made will likely plateau in the very near future. 

His vision will not return, and with that prognosis, the plan is to teach him how to use strategies to safely care for himself and move around to the best degree possible.  His speech will be permanently altered.  Those around him will continue to get used to communicating with him - what comes to mind is the ability of an early childhood teacher being able to read what the students write - you just get used to it! At the current time, it has been possible for people to understand most of what he is saying, but certainly not all. His balance is not reliable, so he he isn't supposed to move around independently.  He can get in and out of bed/chairs, etc., but for his safety, he needs someone there with him when he is moving about.  This could improve over time as he memorizes what is in the room.   Probably the most difficult limitation to live with is the inability to swallow solid food.  It is highly unlikely that this ability will return as the damage to the necessary muscles used for this is severe and beyond repair.  With that said, his nutrition will continue to come from the feeding tube indefinitely.  The specialists responsible for carrying out his rehabilitation plan are equipped with tools and accommodations to address all these things, but it is likely that these disabilities will all be permanent.

Alex and the kids are continuing to find their new normal.  The new year will bring more changes in medical plans, coverage status, and of course the dreaded turn over of the deductible.  I continue to be in awe of Alex her ability to remain optimistic, even during the absolute worst of times.

I can't help but think back to the beginning of this ordeal.  We all had so many questions.  Many of them unfortunately, remain unanswered. I think what many of us will say is that we have learned from this...about people, about family, about friendships, about pain and loss, about the invisible struggles of others, about stress and anxiety, about strength and weakness...and so much more.  The fact remains that the life of this family that we all love so much has been permanently changed - they hit a major, unimaginable, obstacle back in September.  There are still so many unanswered questions about what the future holds, but one thing remains constant - this village that has been created is strong and each member of the Nolan family will always have the support to face tomorrow.  

As we move into this week of holidays, I would encourage each of you not to let any opportunity pass to tell the people close to you that they matter! We all work hard, we are all busy, we all feel stress, but what is the point of any of it if we don't feel a sense of community and importance each day of our lives. My goal for this week is to be present, intentional, genuine, and to give grace to the people around me that are struggling.  Life is precious and we only get one, time is short and it never stops - live it up!

 

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