Monday, March 17, 2014

Happy St Patrick's Day - what better day for a wee Fergus update?

First, you should check out last year's reminiscent St Patrick's Day post:

I think it's because the wee Fergus had only just started wearing clothes on his first St Patrick's Day that I remember his darling little shamrock outfit so well. But it also seems to shrink in size such that I can no longer conceive that my huge boy today was ever tiny enough to fit that first little outfit. And he had practically doubled in size already from birth by the time he wore that!

Here is my little man's 4th St Patrick's Day and I couldn't be more proud of my son.

He started public preschool in January and is just thriving. We are all about phonics and other pre-reading skills. So, if you hear us saying things like n-n-n-n-nighlight starts with "n" you'll know why. "N" sounds like n-n-n-n-n....

Gus still goes to Perlman Center twice a week. He's still making slow but sure progress. His left hand gets gradually more involved all the time. Gus got his first set of DAFO's - you'd call them leg braces - we call them super legs. He is able to stand in better form with those. Now when I take him to the potty I can have him hang on to the handicap rail while I take his pants up and down as he can hold himself up like that for a few seconds at a time. Crawling doesn't look much different than many months ago - it's still more dragging himself along with mostly his right arm but he's bending his legs more even if they aren't powering him more yet. He takes better steps and gets further at a time in his gait trainer now and I just brought one home for him that will hopefully work better than what we've had. We are longing for warmer days where we can take family walks!

It's been time for all sorts of equipment - we modified our van for a wheelchair, put in a lift to get from garage to house level, I just tonight got him a gait trainer (walker), portable stroller for when the wheelchair is just too much, and a crawler, and we are doing battle with the insurance company for a power chair. Oh, and Wed we will bring home a stander.

We have been meaning to try Conductive Education for a long time and we are hoping to finally do that over the Summer. It's another alternative (read that as no one no where is going to help pay for it!) therapy that has shown some positive results for kids with CP.

We now have total conversations with the little man. He is very detailed and clear in his language. Thank God we have one area where he's ahead of the milestones!

Maria is finally doing better, though it's scary to put that in print for fear of jinxing it. After about 10 hospitalizations in 15 months, we finally made the tough decision to not take the advice of her nephrologists here and we sent her to Tampa, FL, to the Norman Parathyroid Center at Tampa General to have a parathyroidectomy. She has gained strength and health back in a way she hadn't been able to in years. Now she walks alongside us at museums instead of propping herself up in her scooter!

Happy St Patrick's Day!