and just like that, we're done with round 3. Round 4 starts 12.29.17. ALSFRS-R Scores: 12.10.17: 34 11.16.17: 35 10.19.17: 34 according to Radicava.com : ALS Functional Rating Scale–Revised (ALSFRS-R) The ALSFRS-R consists of 12 questions that evaluate 4 domains (fine motor, gross motor, bulbar, and respiratory function) in patients with ALS.1 Items: speech, salivation, … Continue reading Round 3, 9&10
Erasmus
Married 11/12/16, My husband Kenneth and I are loving this crazy life of ours with our service dog, Baloo, and grumpy cat, Ian.
12.8.17 Stupid Poof
Remember when I told you that I was losing my shoulders? Well, here's what I'm talkin' 'bout, Willis: Obviously my bra agrees as it couldn't dare be bothered to remain in hiding - don't judge! It's hard to see those pics side by side, I feel like I'm crumbling in the pic from this … Continue reading 12.8.17 Stupid Poof
Round 3, 5&6 and then some
Port life is a dream, round 3 is easy peasy lemon squeezey. Today was my 12 month visit for the PHENOTYPE, GENOTYPE, AND BIOMARKERS (PGB) IN ALS AND RELATED DISORDERS study at UTSW with Nina the Great. Good to catch up, got my blood on the second stick (after we shot the tube out once), … Continue reading Round 3, 5&6 and then some
Round 3, 3&4
Two more flawless infusions with nothing overly exciting to report, whoo hoo! I found this fun little info graphic the other night while I was looking for something in my insurance app. Interesting article from The New York Times: A New Drug for A.L.S., but the Diagnosis Remains Dire states: The Food and Drug Administration … Continue reading Round 3, 3&4
12.3.17 Hi Pot, meet Kettle
My entire 30 years on this planet have been dictated by some other agenda: sports, school, work, etc. so this last month has been completely foreign to me. Doesn't get done today? There's always tomorrow! Sleep until I wake up? Sure! No pants party for 3 days straight? The cat doesn't mind! I'm in unfamiliar … Continue reading 12.3.17 Hi Pot, meet Kettle
Round 3, Days 1&2
went back to the surgeon, turned out my tubing was pinched and that's what was causing all of the issues. Day 1 of round 3 was easy, hit on the first stick, easy flush, easy infusion. I got super duper nauseous a few minutes in but it went well. Day 2 was easy too, and … Continue reading Round 3, Days 1&2
11.29.17 Perfect Peyton Pictures Portray Productivity Plunders
Well, I hope Monday's post was motivation for you because it was a swing and a miss for me. Turns out, I spent almost the entire month flying by the seat of my pants. My whole "schedule it for after Thanksgiving" plan worked until Monday when I woke up and realized I hadn't written anything … Continue reading 11.29.17 Perfect Peyton Pictures Portray Productivity Plunders
11.27.17 Wake Up, Sunny!
Here we go, time to get up and get focused on the agenda. Last few days before round 3 of radicava ridiculousness begins, before christmas chaos starts, and time to add purpose back into the routine. I'm excited to share with you my "Sunny Do" list. Part of this transition has been to purposely focus … Continue reading 11.27.17 Wake Up, Sunny!
Our Girl
my sweet niece ella
11.24.17 Puppy Dreams
This is one of my favorite pics of our sweet boy. He will be 17 months, no shame in my game, in december and is very much so still all puppy. He plays hard and snuggles harder than anyone I've ever met. It's full body contact or none at all, there is no in between. … Continue reading 11.24.17 Puppy Dreams
