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1/2/2023 General Josh Update

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Tomorrow marks 3 months since Joshua's stroke happened.  Time feels strange in important/unique/traumatic times of life, especially the first days and weeks.  It feels more normal now. Physically -  Joshua's doing very well.  His physical therapy went from 2x/week in November to 1x/week in December to 2x/month in January.  He passed his driver evaluation last week so HE CAN DRIVE again!   This feels huge for him and us.   Driving again will hopefully help his spirits, as he'll be able to get himself to and from the gym, friends, etc. at his own convenience. Occupational Therapy ( OT ) - He basically " graduated " in late November.  He says the sensation on the right side feels different than the left side, although he can feel everything.  He says it's hard to explain. Speech - He was finally able to get in for an evaluation a few weeks ago, after he got sick the day of the first one and it had to be delayed a month.  He starts hi...

HOME! (10/20)

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Joshua was discharged from the hospital October 20th, a Thursday evening.  He had a moment of anxiety, leaving such a safe place and a whole other world he got used to living in.  After talking with me, a nurse, and Rodney, he felt better.  At least enough to give it a go.  He hasn't looked back. Ready to go. Trips to the car Wheeling himself out.  He could walk well in his brace at this point but he was tired and we wanted to be safe. Walking the grandparents' puppy.  Great therapy! Adjustments to home and a different kind of busyness (closer to regular busy family life) have pursued.  Everyone's doing well.  Outpatient therapy and education have been the recent bigger changes. Again, thank you for your generosity, thoughts, and love! 💜 

10/19 More Coming, including PICS!

My phone isn't letting me add pictures recently.  I think my laptop will but I left it at home. Less busy evenings at the hospital have become a good time to update my notes, the blog, etc.  So, YES, I'm doing this all via swipe on my phone. Oy, finger cramps. I plan to share what's been happening at home.  I also want to give more detailed updates of the goings-on in the past weeks, especially the first few days.  So look for those posts.  Maybe not soon and definitely only after I get home in a day or two with a PC or laptop.  But by 2023, they should be posted.  😄

Oct 19 - Discharge soon!

We were told a week ago that THIS FRIDAY, Oct 21, would be Josh's discharge date, meaning we could take Josh home and transfer to outpatient care! But apparently, his physical therapist says he's ready to leave sooner!  So we'll meet with a doctor tomorrow to have "formal education" on everything we need to know to care for him on our own.  Then, depending on how we feel, we get to decide if we're ready to take him home tomorrow or Friday.   The end of Joshua's inpatient hospital stay is fast-approaching! 🙌 Of course, this means many changes, much learning and research to get the best care we can.  And more work on Joshua's end plus many more appointments. We're not out of the woods yet.  Every week seems to bring its own ups and downs, challenges and triumphs.  But we're elated to see such continual progress.  Josh has worked hard and has much to be proud of!  His therapists and nurses simply love him, his positive attitude, witty remarks, ...

Oct 16 - NF1/Neurofibromatosis

I admittedly don't know as much about NF1 as I feel I should know at this point.  In-depth research is forthcoming.  What I do know is it's a genetic condition, though it's not passed down from Rodney or me.  I think it's from a mutation in the NF1 gene.  It's the reason behind Joshua's stroke, thus the need for a blood thinner like aspirin to prevent future strokes.  There's much more to it but that's the gist.        Joshua's had more tests connected to NF1.  The results have shown that he has an optic glioma/small tumor? (at the optic chaiasm, the crossing of the two optic tracks) and a couple nerve sheath tumors on his spine.  This means he'll need to have continual follow-up care in the near future and throughout his life.      We've all had a lot to process, especially Josh. He was told pretty early on that he has a 50% chance of passing NF1 to his children.  That was one of the biggest blows for him....

Visiting Hours

I posted Joshua's schedule in a previous blog post but to make it easy, for those interested, the best VISITING HOURS are...     11:30am - 2pm     3:30/4pm - 8pm It'd be best to text or call one of us, to make sure something else hasn't popped up on the day you'd like to visit.  But VISITORS ARE WELCOME.  Thank you!

Visits & OUTINGS!

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Joshua has had multiple visits and outings, at this point.  The first outing started with the gym for therapy last Thurs or Friday.  Then we were told about the family/ride pass.  We thought it would only be Saturday afternoons/evenings and Sundays because there's no therapy then.  But he's had more opportunities than that already!  His first visits were from a good friend, two of his grandparents, and his siblings.  Since those first visits... Saturday YM/AP group visited in the morning Uncle Nano/Nate visited for much of the day and evening.  His cousin and sister visited that evening too.   Sunday My cousin, Brady, was able to visit in the morning. Church, Sacrament Meeting.  We heard that church here is something else, like it's condensed in both time and spirit.  We found that to be true from our first time going.  It really put our experience into perspective.  I think it profoundly impacted all three of us (Rodney, ...