Holy smokes. Luke is starting to act (and look) like the babies I remember with my other kids. In other words, it’s nice to be out of the hospital.
Let’s get to the update, shall we? We’ve had about eight doctor visits the last three weeks. I’m tired just thinking about them all! I have some good news and some “potentially bad news, but we’re waiting it out to see.” First up, the good news with a sprinking of “potentially bad news” (i.e. surgery).
If you follow me on twitter or FB, you know that last Thursday was a HUGE milestone and a leap of progress. We visited Luke’s general pediatric surgeon, Dr. Meyer, and he said (and I quote), “Well, why don’t you just check back in with us in about a year so we can take a look at how his scar is doing.” I swear I had to look at him and blurt out, “Really?” Dr. M just smiled and said, “Really.”
I know I’ve gushed more than I should have about this surgeon, but allow me one more time, ok? He loves kids. He’s a skilled surgeon. He speaks Luke. He has been such a big part of our life for the last eight months and I am grateful that he’s been with us, even though I might’ve wished the circumstances were different. On second thought, if they had been different, our relationship with him wouldn’t have been as powerful. So, strike that circumstance part. It is as it should be.
We also had a visit with cardiology earlier in the week and Dr. Johnson is happy with the size of Luke’s VSD (the hole in the upper chamber of his heart). The left side of his heart is still overcompensating and doing most of the work, hence the reason it’s slightly enlarged. But, for now we’re just going to watch it. As long as Luke continues to gain weight, we’ll leave it alone. Then, at age 2, we’ll revisit the open heart surgery option. I’m hopeful that some prayers will take care of that one. We head back when Luke turns a year to assess his progress.
Neurosurgery / Plagio
We also had Luke’s post-op follow up appointment with his neurosurgeon. His scar looks awesome. And, as the kids say, “Hey mom, he has a scar on the front and the back like you.” Yes, yes he does. If only I had Luke’s blue eyes… They do want us to visit plagio for the flat spot on the back of his head. That’s in a few weeks, so Luke may be sporting a helmet in the near future. We shall see. They also ordered a fast acquisition MRI which we did last week and the results came back normal. Whew. We got the three- month pass from neuro. Yippee! He still has a fontanelle that’s rather large. And, if at age 2 it’s not closed on its own, then Dr. George will have to close it for him. Add that one to your list of prayers, too.
As much as I love Dr. Enders, we have seen WAY too much of her lately. Luke’s had two ear infections (the last one we just can’t seem to shake). Amazingly, I’ve only had to treat each one of the kids to a single ear infection a piece. So, when Luke came down with his second one, I immediately got worried. Even though he’s been exclusively breastfed (I mean, this kid even gets milk with his cereal!), his immune system is so worn down from all the hospital stays and surgeries. I had a friend tell me the other day that she’s read so much about Luke but she’s only seen him once. We’ve just been extremely cautious about getting him out in big crowds. A sniffle for other babies is a major infection for Luke. And, now that we know he has this cephalosporin allergy coupled with a sensitive gut, that severely limits which drugs he can take. I tell ya, our little Luke is making his doctor’s recall all that knowledge from med school. Unfortunately, it looks like we’ve gained yet another specialist, an ENT (ear-nose-throat) to evaluate the ear infection situation. We’re not sure if we should keep treating them with meds or do surgery and insert tubes (both have pros and cons). That visit is in June, so I’ll keep you posted.
For the most part, Luke is making progress, but he has some definite delays. Fine motor-wise, he’s doing pretty well. Gross motor needs some work. Right now, he can roll from front to back and sit with some help. I know that will come in time. Sometimes the worrier comes out in me, but I’m trying to shake her. That’s tough. We will likely start up with ECI (Early Childhood Intervention), a state-funded program, to do some physical therapy. I can’t say I’m a huge fan of government, but this is one of those programs where your tax dollars actually do make a difference.
He’s an eating machine. I started making my own baby food. Caution: it’s addictive. So far, he pretty much loves it all. Avocados, bananas, green beans, apples, sweet potatoes. Yup. This week, we’re off to be a bit more adventurous: butternut squash, mangos, apricots and pears. Even I’m excited about eating them. His new-found love of eating solid food probably explains why he went from 11lbs. 4oz. last week to 11lbs. 13oz. this week. We are so close to breaking that 12-pound mark I can taste it. It will be such a milestone for us to get there. I have to admit, the eating/gaining weight thing has been our biggest challenge. Fortunately, he’s an awesome nurser (that is God’s greatest gift in all this, I believe). It’s just that with Luke we fight for every. single. ounce. With the other kids, I would say things like, “Oh, I think he gained 2 or 3 pounds last month”, smile and then move about my day. With Luke, I know that every minute he spends crying, he’s burning valuable calories. We anxiously watch the scale’s digital numbers add up at his pediatrician’s office. I hold my breath everytime.
It’s a constant struggle, but I know that we’re going to hit a stride. Actually, I don’t know that, but I’m hopeful.
He’s a talker. And he’s very verbal. Definitely a Whitaker.
So, in answer to the most-asked question, “How’s Luke?” my answer has become this…
Every day we make progress. Albeit slower than we’d like, but we’re moving forward. We just have a different yardstick to measure with when it comes to Luke.