Luke has had a busy two weeks since he celebrated one. This kid wears me out.
If you’re a numbers person, we’ve had:
5 therapy appointments
3 doctor visits
3 helmet fittings/adjustments
1 blood draw (but three pokes – yowza)
all since September 18. That’s just a pile of crazy. But through it all, he still charms every person he meets. That’s for real.
So, on to the update.
THERAPY / PT & OT
Luke’s been on a twice monthly schedule of occupational therapy (OT) through home-based ECI (state-funded program, your tax $$ hard at work!!) for the last couple of months. We can definitely see progress, but the frequency is so…infrequent…that I knew we needed to maximize this time of sponge-like learning. So, after a consult with the Dell Children’s Developmental Clinic, we opted to have him evaluated by a private physical therapist for additional therapy. Hey, we’ve already met every deductible and out-of-pocket expense for 2010 and I have TONS of free time on my hands. Why not? Seriously, though. He is totally benefitting from the twice a week PT. Just yesterday he pulled himself to stand from a sitting position. And the mom with the sunglasses on her head said: “HOLY SMOKERS!”
He still has some kinks to work out and everyone is still perplexed as to why he’s still dragging one of his legs. I won’t go into all the details, but I’m a little worried. I guess I’ll quiz our next specialist at the end of the month after we do x-rays and a full assessment of his hips and feet.
I will say, he’s one fast dude, even with that “atypical crawl.”
GENERAL WELL CHECK
I have to laugh at those last two words. Luke doesn’t really have “well checks.” I know those will come in time. At his twelve-month pediatrician check up, things looked pretty good. He’s about 15.5 pounds so we were just shy of our 16-pound goal by a few ounces. Considering we made that goal last November before the months and months and months of crazy, we were all pretty happy with his progress. Our next goal is to get to 20 pounds by age 2. Yes, you read that correctly. Look as if Luke is going to be looking out the back window and riding backward in his car seat for quite some time.
Well, he’s basically just holding steady. The hole in his heart is still there and it’s not really getting smaller. And, the echo showed that his PDA (the other hole) didn’t actually close like we thought back in November. That really pesky VSD is the reason for Luke’s small stature. He’s taking in a ton of calories, but burning most of them off by working to regulate the hole in his heart. Dr. J is giving him 6-12 months before we talk surgical options. I’m trying very hard to 1) pray that damn hole/s away and 2) taking each step of progress for what it’s worth. There are various secondary complications that can come from living with a VSD. Fortunately, the only one Luke is having is a slightly enlarged left side of his heart. Once the VSD closes or we surgically close it, that left side should go back to its normal size. Sorry for the medical information overload.
All of Luke’s blood work to confirm his blood allergy to cephalosporins came back…inconclusive. Fantastic. Dr. S told us, though, that based on his clinical response to that family of allergies, he pretty much has a severe allergy. No need to try it again. I mean, the test may have come back shady, but his reaction has been crystal clear. No cephs for you, buddy. All of his other bloodwork came back normal, for the most part, and there was no permanent damage done to any of his red cells. Layman’s terms? Good news. I’ll take it.
Luke’s time in the helmet may be coming to an end. Excited! Sad 🙁 Anxious? I’ve felt all three. We go in for a head measurement next Friday and will make a decision to either keep him in it two more weeks or call it quits. We were hoping the helmet might bring us luck against those Okie State Cowboys, dadgumit. At least the sips and Raiders lost. That’s worth something.
And, that brings me to all the other stuff. We’re working on transitioning Luke from baby food to table food. I’ve forgotten how hard that is on everyone. Not just the oral aversion thing, but the “I can’t believe my baby is not really a baby anymore” thing. He’s still nursing, but I know the months and days are ticking away. I think I’m holding on to that because it’s the one thing I know how to do – well. It’s such amazingly precious time and I don’t know if I’ll ever get to do it again. Sigh. That’s just too much to wrap my heart and head around right now.
It’s been a really hard past few weeks. I cannot begin to tell you how many times I’ve stopped what I was doing and gone back to read the blog from a year ago. So many anniversaries. So many emotions. So many milestones. We’ve lived so much life since then. I find myself crying at weird times. I’m hoping that it’s because I’m a little hormonal and a wee bit tired. As Scott says, “This too shall pass.”