SMA Awareness Day #6

I didn't think too much about which shirt to wear today because I just grabbed the top of my pile because I was rushing to get ready as Casey had an appointment at the hospital this morning. But, it is one of my favorites.  I have this orange #CureSMA shirt and a blue one.  I had a purple one but I trashed it with bleach so I just ordered another.  I hope it comes before the end of the month!   Orange and purple are the colors of Cure SMA so I like wearing them, especially during SMA awareness month.  

****OH and this Saturday is the annual candle lighting!****

August is SMA Awareness Month and we choose the second Saturday in August to remember those who have lost their battle with Spinal Muscular Atrophy (SMA) and to honor those living with SMA. We hope to spread awareness and unity to all families, especially during this most difficult time. Join us to light a candle and spread the light around the world on Facebook. Light a candle from anywhere at sunset on Saturday, August 8, 2020

Here we are at the hospital. Casey had an infusion today to help increase his bone density and treat his osteopenia.  Years ago he and Colin had an infusion of a medication that took hours to deliver and had to be given over two days.  This medication was given over a half an hour and didn't require any blood test before hand,either.  The nurses were very nice and efficient.  The worst part was waiting for the IV nurse to arrive.  She got him on the second try.  

Gene dropped Nurse Staci, Casey and I off and he drove somewhere and found some wifi and did some work.  He also picked up a pizza from Marcos :) We arrived at 9:45 and hit the van by 12:15 so that's not too bad.  

Casey had a shower to get off any hospital germs.  I took a quick nap. I am always so drained after being in that place.  OH, we saw our old nurse, Karen, so that was cool. 

Casey started feeling yucky.  We were warned that after the infusion you could feel symptoms similar to having the flu; achy, tired, etc.  I hope that since he has had a similar med before that it wouldn't affect him but it did.  Each time he gets it he should have less affects. 

Reading group was fun today.  We have a new participant and it was great to have her.  I think she'll be a good fit in our little group.