Monday, September 26, 2016
A Growing Boy
Mason is learning and growing like a typical four year old (4 years 8 mos). He's opinionated, determined, and still shy around unfamiliar people. He loves to use his hands in things like playdoh and thinking putty. He sword fights with his brothers.
He bosses people around and does chores and laughs at jokes. He likes playing Minecraft. He loves to hold his sister's reptiles. This one is Mufasa, a bearded dragon.
He had Myelo clinic this summer and saw all his specialists. One giant good news we got was that his scoliosis has improved. The orthopedic surgeon was surprised but pleased. His curve is now only 13 degrees, very minor. As a matter of fact they would not prescribe bracing for someone who was presenting with a 13 degree curve. However, as Mason already has a brace we have the option of using it. Mason's skin is very sensitive and we've struggled to use the brace without rashes, eczema, and breakdown, but we're trying using it when his skin can handle it, and we're doing lots of play based physical therapy at home to keep building and strengthening the muscles in his core and back. Right now Mason has been dealing with a bout of eczema that even medicated creams are not healing completely.
He also had a urodynamics test (bladder pressure test) today. It was the first one since his medication dose change months ago. He passed with flying colors and the increased dose of medication has improved his bladder pressure. Basically, that means his bladder is paralyzed well enough that it can hold a normal amount of urine without spasms. Spasms are bad because they thicken the bladder wall and can cause reflux into his kidneys, damaging them.
Five years ago when we first learned of Mason's diagnosis before birth I couldn't picture what his life would be like. I just had no idea. While he has had more than his share of surgeries already (18), comes with a few daily medical requirements, and has more than the usual number of appointments, on the whole he is a typical little boy. It's a joy to be his mother!