Here we are again. It’s been a rollercoaster of emotions and milestones with Luke these past few months. I know it’s been a while since I’ve given the “master” udpate, so here goes. For those new to the blog, click HERE for a quick rundown. For those that have been around a while, keep on readin’. Let’s start with the biggies and most exciting news.
1. Luke is walking!! He mastered that skill just shy of his 17-month birthday and I totally broke into tears. He’s been in twice weekly physical therapy since last September. We’ve been hard at work on many physical developmental milestones, mainly gross motor, and he has done remarkably well. In fact, this week, we moved from twice a week, to once weekly therapy. That was really fantastic news. For a kiddo who has had four surgeries, three to the belly and one to the spine, his core strength is worse than mine! We’ve learned how pivotal that is to his walking success.
2. Luke is gaining weight which means, we’ve put surgery on the BACK burner for a while. YES! In May we have Luke’s final (I hope) visit with his pediatric surgeon, Dr. Meyer. Luke is drinking his supplement with no complaints and is gaining weight beautifully. We are so grateful that g-tube surgery has been pushed back in the corner for now.
3. Luke is catching up to his “age appropriate” milestones. He’s starting to say a few words, point to things in books, give kisses, wave bye-bye. He’s still below average in almost every major category, but the progress he’s made in the past six months has been remarkable. I look forward to seeing what he accomplishes from now to age 2. Whoa. Age 2!
Our biggest challenges.
1. Even though Luke IS walking, he’s not pulling his feet to center as we had hoped once he became weight bearing. Meaning, he sort of waddles like a duck when he walks, using the inside of his feet to push off, rather than doing the traditional heel-toe manuever. We are meeting with his pediatric orthopedist at the end of April and I strongly suspect he will be sporting some ankle and leg braces in the very near future. Not a fan of the hardware, but I know how key early intervention can be. Again, this might be something that we never forget, but he never remembers. Here’s hoping.
2. Strengthening his core. We’ve come a long way, but still have a ways to go. Right now, we’re doing baby sit ups with him, using balls and balance activities. John Paul has found his therapy niche. He is fantastic at doing this with Luke. God love that kid.
3. Eating. Yes, I know #2 above talked about how great his weight gain was progressing. But, he’s drinking his calories, not eating them. In fact, Luke doesn’t really know how to eat. He has once a week occupational therapy and we are seeing nominal progress. Just to give you a clear picture, Luke’s table food intake in one day includes: 4 goldfish, two pinky-sized bites of cheese, 5-8 cheerios, 2 kernels of corn and 1/4 cup of yogurt. Spread over three meals and one snack. That’s it. I hope that puts a picture on how frustrating and exhausting mealtime is with him. Sometimes we can get him to eat a few small bites of avocado or mashed potato. Sometimes, we can sneak in a small bite of chicken or sausage. Many times, though, when we push too much he throws up as an involuntary reflex. Luke’s biggest challenge is that he doesn’t know how to chew, so he “pockets” the food in his cheek, starts to gag because he doesn’t know how to swallow, then he gets mad and throws everything off his tray. Quite honestly, I should’ve made this our number one challenge. It is a constant struggle. The day he eats an entire meal of table food, I know I will break down in tears and fall on my knees in thanksgiving. Someday. Some. Day.
4. And the remaining biggies are the “wait and see” surgeries. In September we will make a decision on his open heart surgery to correct his VSD (heart defect in the upper chamber) and in August we will assess how the fontanelle on the back of his head is closing. His neurosurgeon is giving us until age 3 for that to close before he closes it surgically. Clearly, we are hoping for a natural resolution to both, meaning that we are doing are darndest to pray them closed. We’ll just have to wait and see 🙂
5. In May, we meet with the long put-off pediatric geneticist. I’m not really sure Dr. I will be able to tell us anything. Perhaps there’s a “syndrome” that captures all of Luke’s quirks, but I suspect it’s called: CL. Crappy Luck. But, at least we can check it off the to-do list and I can get all the specialists off my back for not calling earlier.
So. That’s alot of progress and alot of unknowns. To be really fair, there are many other unknowns with his kidneys, spine and blood levels. Those probably won’t make themselves known until Luke hits puberty. I’ve got some time to ease into that phase 🙂 My apologies for the information overload. More than anything, I needed to write it all down and get my head around it. Someday, I’ll be glad I wrote this all down to remember.
Luke, buddy, we love you to the moon and back. Everyday you remind us that your life is a miracle.