Mostly, Luke is rocking it. It’s just been a really rough couple of weeks around here since we met our new reality. He’s not very nice.
After a visit to Luke’s pediatric orthopedist, we learned that Luke will soon be sporting SMOs. We head back to the orthotist, Mr. Bud, on Friday for his fitting and then Good Friday we put them on for good. What’s an SMO, you ask? And, why does Luke need them?
To be all technical, the design of an SMO (supramalleolar orthosis) mimics the effect of a high-top shoe but provides more intimate control of the ankle-foot complex because of its custom-molded fabrication. An SMO, in Luke’s case, is also helping to control the rearfoot position because he walks with pronated feet (waddles like a duck, walking on the insides of his feet with them splayed out).
I totally fired the orthotist back in October. Guess he’s back on the payroll. Specialist count is now back to 9.
When we walked into the office to make the appointment, the two ladies at the front desk asked, “What is Luke doing back here?!” Another specialist sent us this time, gals. Dadgumit. Luke is required to wear the SMOs while he’s awake and will likely wear them 1-2 years. Yes, years. But, I am grateful that it’s fairly non-invasive. And, hopefully this will fall into the category of “won’t remember that” for Luke. They will probably mess with his balance for his new-found skill of walking, but we’re hopeful that he will adjust quickly. In the meantime, we’ve scheduled an eval with ECI to get him on the physical therapy circuit.
Eating. Or, perhaps I should call it the lack thereof? We no longer see ECI (the state-funded therapist that was free – major bummer) for occupational therapy for only one reason. They simply can’t come out enough so we can make the necessary adjustments in Luke’s feeding therapy. So, we’re going the private route. We’ve put private physical therapy on hold and hopefully ECI will be able to provide that instead. Luke’s OT is an Aggie (whoop), former Fish Camp Co-Chair (double whoop) and is a-mazing in the eating therapy department (bazillion whoops).
Our reality is that Luke is definitely getting therapy twice a week for the next six months. And, we can expect progress, but it is going to be extraordinarily and painfully slow. That has been extremely hard for me. Like, put me in a room full of Longhorns and make nice kind of hard. We learned that he has some serious sensory issues. For example, we took his favorite toy and put it into a bin of pinto beans. He cautiously lifted it out, taking great care not to touch any beans. As we moved down in size to cornmeal, he started gagging immediately. Like, I’m about to throw up get that junk away from me gag. I’m pretty sure a tear spilled from my eye during that therapy session.
I am sure of three things:
1. Luke is going to eat eventually.
2. It is going to get worse before it gets better.
3. It is going to take every ounce of patience in my body to do this. But, I will do it.
In addition to the twice weekly therapy, we have a whole host of “sensory activities” we do with Luke. The kids have been really spectacular at pitching in and modeling the behavior and reactions we want Luke to do. And, we are so thankful that cousin Ava is in on the gig. We just had our first “dinner date” where she came over at dinnertime and showed Luke how much fun it was to eat. Aunt Amanda and I plan on doing more of these. They’re just about 3 months apart, so she is a perfect (and mighty cute) kiddo to lay on the peer pressure.
Amidst all that craziness, the supplement Luke drinks is doing its work. His last weigh in he was only 6 ounces shy of 20 pounds. TWENTY BIG ONES! We are so close I can almost taste it. Pun intended. Check in tomorrow for owls, hineys and a whole lotta cuteness.