Monday, September 26, 2016

A Growing Boy

It has been several months since I've shared any updates here. Mostly that is because we've had a lovely summer and I have not been able to bring myself to sit and write boring updates. I love that life right now in medical land is pretty boring! We have been outside, gone to a Celtic festival, been swimming, visited the Columbus Ohio Temple grounds, had campfires, enjoyed the Renaissance festival, and just had a relaxed, family oriented summer.

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's waiting for an opening for PT to try out using a walker. It's just going to be another option during his standing time each day, it would not be practical for him outside the house for several reasons. For one, he can't actually use his hands to do anything (play!)when holding on to a walker. For another, he can't bend over to pick up anything because of the bracing he has to use. This week Mason will get new HKAFOs (standing braces) because he outgrew the old ones. I'm slightly nervous because we made some changes but we think he's ready for less support at the hips, so he's moving from a plastic back piece and belt to a leather belted area. We'll see how it goes.

Today Mason got new glasses. These are the first pair he's had since his double eye surgery several months ago. Now that the healing is officially over his vision has improved. He does still have double vision without glasses as his eyes turn in, but glasses can correct that turn now - without bifocals. This is a large improvement because before his glasses could no longer compensate even with a strong prescription and bifocals.

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!

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