Otherwise titled How we’ve been spending our time.
Wow, it sure feels like I’ve not written very much this week. Nothing is wrong; we’ve just been busy living life with Nik. That simple statement holds so much that I may have to break it up into several posts just so I don’t overwhelm anyone —myself included in the writing of it!
So, my son the media darling is at it again. Last Saturday we spent the day supporting our favorite Easter Seals volleyball players here. Last year we participated in the opening ceremonies and rolled out the official game ball for the politician’s match. The same ball now sits in Nik’s room and bears the autographs of one of our U.S. Senators and our Congressman, as well as our current Lt. Governor (and gubernatorial hopeful this year). The photo on the sidebar of my blog was taken at last year’s ceremonies. And was trotted out again this year for a half-page “thank you” ad in the largest newspaper in the state.
On a side note which makes me think I should have titled this post “Coming Out,” we have been active supporters-in-kind of Easter Seals since Nik began receiving services when he was about eighteen months old. We were the featured family at the 2006 annual dinner, Nik was profiled for both the annual dinner program and the website of Easter Seals Delaware & Maryland’s Eastern Shore, and he graced the cover of the 2006 Annual Report.
In addition —and completely understandable to this admittedly biased mother —Nik has become somewhat of the darling of the staff at both the regional office and our local center. I know some of it has to do with our active support and participation; it’s difficult for many families to find the energy or desire to display their child’s disabilities to the general public in such a blatant fashion. Niksdad and I feel strongly that we want to make our experience —and Nik’s— something to help inspire others whether it is through offering hope or supporting fundraising efforts for something we not only believe in but from which our family has benefit greatly.
But I digress.
The week picked up the pace right out of the gate on Monday. Sure, we had the usual routine of feeding therapy, PT, OT, et al. But we didn’t count on Nik getting a nasty bout of cellulitis at his g-tube site again. I think he never really shook the first infection from a couple of weeks ago. I’ll spare you the graphic details and simply say this bout was messy and painful for Nik. And, of course, the requisite antibiotics have created a reasonable facsimile of this scenario —minus the ear infection and rash.
We had to miss swimming this week because of the infection but hope to be able to get into the pool tomorrow. Swimming “lessons” have been an interesting experience for all of us; Mr. Tim, the very nice instructor, has struggled with knowing how to help Nik who has, in turn, struggled with his renewed fear of the water. I have been trying to strike a balance between wanting to push Nik to find his love of the water again —he still loves his bath and shower time— and not wanting to traumatize him and make the situation worse.
In speaking with the aquatic director, Donna, this week I learned that Tim feels like he isn’t really contributing anything to our experience and feels bad making us pay for it. Tim wants to be able to teach Nik to swim; I want Tim to teach Nik how to love the water again. An interesting advocacy opportunity awaits in that I find I must continue to educate others about letting go of their expectations of what Nik’s success will or should look like. We shall see how it goes; Tim has gotten the class program for the mom/tot program and will try some of the activities which involve music and games. We’ll give it another week before we decide which way to go.
Nik also got his new orthotics this week. It’s a pretty big deal because they are very slim, low profile SMO’s which only come up below the ankle and correct Nik’s significant pronation/collapse. He has gradually gone from full-length molded supports with no articulation to an articulated ankle orthotic and now this. Within the first wearing, Nik’s balance and stability improved dramatically. He still has a wide-based, uneven gait but his static balance (standing in one place) is better and he seems to have narrowed his stance to a slightly more typical new-walker stance instead of the extremely wide base he used before. Even Miss T noticed it this week during Nik’s PT session.
Nik’s not yet biting on foods but he has progressed to wanting absolutely everything everyone else is eating! Nik and I went out to dinner with my parents last night —Niksdad had to work —and he impressed all of us with his insatiable appetite! Granted, his oral motor skill level is such that he may have only eaten an ounce of food in total but he made a concerted and eager effort to consume ravioli with meatballs (they were nice and soft, with lots of bread in them, I think), salad dressing on a cucumber slice, tastes of Nanny’s stromboli, and his very own wedge of dough which he got to dip repeatedly in his own pasta sauce. He was a gooey, happy mess by the end of the meal —and his grandparents were delighted at how social and animated he was with them.
Animated is a great way to describe Nik lately. He’s been so sing-songy and chattery every single day. The amount of time he spends in what I call his quiet zone seems to be diminishing significantly —with the exception of the occasional absence seizure which we still see once in a while.
Okay, I wrote all that mid-morning today. It is now ten at night and I’ve been interrupted so many times today that I’ve completely lost whatever train of thought I had left. I will post this now and share more “snippets” tomorrow!