The ROYFAM Story

I’ve been silent - because I’ve been sick and now I’m officially silent because I have no voice!  This cold or flu whatever it is just hanging on makes me crazy!  Today I feel more normal - except the voice and the cough still lingers.  Jean as avoided it so far - tells me he doesn’t get sick so he won’t catch it! Where’s that palm to face emoji when I need it!  He’s actually doing so great!  He’s finding things to keep himself busy - I mean, I’m finding things to keep him busy.  It’s so strange this place we are in. He’s always had an extensive to-do list of his own - no matter the weather outside.  He always kept the garage cleaned and somewhat tidy but now he doesn’t see it or feel the need to tend to any of it.  He did fold my laundry for me - always grateful for the help!!  But it’s strange to watch your person change.  I’m so glad he’s kind and gentle I have seen some stories I hope I never have to experience.   Last week he b...

2/5/24 Jean woke me at 1am…he couldn’t sleep.  I could tell he was stressed - I’m sure worried he will fall back into that hell hole again.  He asked if  he should take a gummy (THC) and I immediately replied yes!  He used to take a half and now he doesn’t waste his time - the guy slept until just after 7am.  I’m truly so happy to see him sleep!   Yesterday we saw cardiology.  Along with his FTD/ALS he was diagnosed with HCM (hypertrophic cardiomyopathy) in that first hospital visit in October.  Lots of younger athletes die from this - the valve in the heart is a bit longer than normal and when the blood flow is fast the valve blocks the flow so they medicate him to slow his blood rate allowing the valve to perform as it should.  Doc was happy to see how well Jean is doing.  The last visit he was in his sick phase.  That carbon dioxide was creeping into his system.  He does want to send Jean for a CT scan to be sure no damage w...

Thanks everyone who took the time to read my posts.  I’m happy you’re here and grateful you want to know what’s up with my guy and our family.   When Jean was in the hospital I ordered a bed - it’s like a hospital bed but aesthetically pleasing 😜 He needed to be able to raise the upper body slightly and pillows weren’t cutting it.  I didn’t hesitate when my friend Robyn shared that she’d done all the research and this was the best one for the money.  I have NO regrets!!  This thing is perfect!  I loved my old sleep number bed so much I was struggling to change but elevating the head for sitting up blogging, finding inspiration and watching reels is a game changer...oh and Jean can breathe and sleep next to me again!  Head up, feet up, little massage…Jean doesn’t like that part - weirdo!  Says it bugs him! It’s ok I just use it when he’s not in bed.  I fell asleep writing this!   First of all, I haven't blogged in years, let alone f...

I got a great night of sleep.  Made my way to the hospital much later than the day before as the hospital does a briefing at 7am and they prefer to have the halls quiet during that hour.  I respect that.  The staff there was incredible to us! They were compassionate and informative.  Jean was already awake and looked so great!  Still tubed up but nurses said they were hoping to take it out and see how he responds.  They seemed confident and that scary feeling of two options, neither of which were ideal, didn’t seem to play into things as they did just 30 hours before.   I missed the untubing and walked in on him coughing and wiping his mouth.  The nurses were impressed with him, not only how he handled this but everything leading to it!  Many who had attended to him over the past few days came in to check on him, amazed he was alert and without a tube!  His voice was so funny when they removed it.  Branden was with me and we laughed...