So Harry is sick again. I feel like he just got over his last cold and was back to normal, but here we are again. Being a first time mom is challenging, but compound that with a special needs child and sometimes I feel so lost. Harry was last sick in January; it lasted only a few days but put him on the couch for 3 whole days. With his muscle disease, muscle atrophy is a real concern. I remember reading an article that children with SMA experience muscle atrophy after 4 hours of inactivity, and that number has sort of stuck with me. After those 3 days it took nearly a week for him to regain strength and walk normally again, and it scared me.
I’m trying to devise plans to help enable him and his muscles, so the plan is to keep moving through this latest cold. The mornings have been a challenge for us, even when he’s feeling well, because after a long sleep his muscles are weak. We’ve figured out that a warm bath wakes them back up, so he’s in for a lot of warm baths through this cold! My pediatrician also recommends swimming in a pool in the warm months – more reason for us to insist on a pool for our next house!
The other major concern I have is the fact that Harry’s lung capacity and strength is decreased due to his hypotonia (low muscle tone). In other words, he can’t cough as strongly as he should or take really deep breaths when he’s fatigued. I had expressed this concern to the doctor during his last cold, so after everything checked out alright, we decided on a nebulizer. Right now he won’t be getting any medication, just saline, but that warm mist paired with some percussion around his lungs will help loosen things up and hopefully prevent lung infections.
Through all of this I get further confirmation that I need to always follow my gut because I am the expert. Luckily my pediatrician is right on board and is usually ahead of me on these things, but it feels more like a team effort with her and I am so thankful for that. She and her team of nurses work with us to develop the best plans for Harry, and I love it. I feel like part of the leading team, and not a follower just going through the motions.
Luckily, this illness has not made him terribly lethargic and hasn’t taken away his bright spirit like the last one. (Let’s hope it stays that way) In the doctor’s office he was his normal funny self, making jokes and making everyone laugh. He asked politely for a lollipop and said bye and “have a nice day” to everyone. At home, the animals are loving him up and helping him feel better. This too shall pass!