Luke Update 11.29.11

I can’t even remember the last time I did one of these.  Do you know how happy that makes me?!  I’m totally psyched about Luke’s progress and we’ve been having more good days than challenging ones.  That’s a far cry from where we were six months ago.  Lightyears.

Let’s take it from the top, shall we?

BRAIN

We’re patiently waiting for his annual visit with Dr. G next August, then an MRI and skull/brain surgery to come before the end of 2012.  I’m slightly concerned about his activity level.  As he moves around more, he falls more.  And, when you’re missing a piece of your skull, that can get a little dicey.  Trust me when I tell you that will be the first question I ask when I see Dr. G next August.  The partial reason for the wait is we want his head size to grow (at age 3, it’s nearly 85% of its full growth) before we go taking bone graft from somewhere else to attach to his skull.  Talk to me next fall, by then I should be a brain expert 🙂

EATING

This is one of two areas we’ve seen the most improvement.  If you remember back in June, Luke was throwing up AT LEAST 3x a day and at the sight of anything remotely fine textured.  Often, he would touch something and upchucking would ensue.  Tons of fun.  So incredibly hard and frustrating to watch.  I quite nearly went into the crazy house.  Therapy was grueling (we were at the occupational therapist twice a week) and the progress came in microscopic steps.  When we would bounce forward, he would get sick, lose weight, start throwing up again and we would regress to a place worse than where we started.  It was hell.  I’m ecstatic to report that while he still has a ways to go, he’s stopped gagging or throwing up with almost everything food.  Yogurt and ice cream are still his nemesis’.  Right?  Who gags at ice cream?  Luke, evidently.  I’ll know we’ve achieved liftoff when he can tolerate those two foods.  We’re working on waking up his mouth muscles, getting them to work together with his tongue to move food around in his mouth, chew it up and then swallow it.  He still struggles with “pocketing” food on his left side and we usually have to dig out the meats and other hard-to-eat foods.  I’m just so thankful that he’s willing to try new textures and put food in his mouth without us standing on our heads anymore.  Our OT Laurie is the bomb-diggety.  It doesn’t hurt that she’s an Aggie.  She gets just as excited as I do about his baby steps of progress.  I wish I could give you a timetable, like, “Luke will be eating hotdogs and hamburgers while slurping down a milkshake by the time he’s 4 or 5.”  But, I just don’t have those answers.  I do know that we are in a better place today than we were six months ago and I am at peace with that.

TALKING

Speaking of progress, his talking has blossomed, especially in the last month.  In October, we began twice weekly speech therapy and it has made such a difference.  While Luke doesn’t verbalize nearly as much as his peers (developmentally, he’s about a year delayed and speaking at a 12-month-old level), he is making progress.  He’s really taken to sign language and can sign so many things:  all done, thank you, please, milk, water, swing, eat, more, flower, duck, toothbrush, help, my turn, bath, book, ball, bubbles and frog.  What is that??  18 words???  As for words he actually says:  all done, thank you, daddy, help, my turn, ball, pop, ho-ho-ho, no and my personal favorite, MOM!  Definitely less than what kids his age say, but since we started at zero, I’d say that’s progress.  He’s started mimicking sounds and trying to repeat words we say.  It’s really remarkable.  I’m so incredibly proud of the strides he’s made.

WALKING/BRACES

We head back to the orthotist in a couple of weeks to get fitted for new braces.  He’s nearly outgrown the ones he got in April!  We will visit his orthopedic surgeon next April to determine how much longer he’ll wear them.  I’m hopeful that we’re on the year plan, but we’ll see what God has in store.  The braces certainly don’t slow him down.  I do think they make it a little trickier for him to get from standing to sitting, but he doesn’t seem to mind them which is awesome.  He climbs everywhere – on top of the piano, the kitchen table, my desk and every other place I don’t think he can reach.  The kid has ZERO fear.

WEIGHT GAIN/GASTRO

Luke is still on daily probiotics and I don’t see that changing, EVER.  I am amazed at how we can see the difference in his temperment and his diapers when we miss a daily dose.  With his sensitive gut, he may be on them for the rest of his life.  My only complaint is that they cost an arm and a leg.  We’re still struggling with weight gain.  Breaking the 20-pound barrier and being able to maintain it has been a challenge.  Last week, our OT weighed him in at 20lbs. 7oz.  I’ll be curious to see if we can sustain it.  I sure hope so.  If we got him to 22 or 23 pounds by age 3, I might just do a happy dance on national TV.  Maybe.  Most of his calories still come from his supplement (yet another arm-and-a-legger in the cost department) but I am thankful that is an option for him.  Just think if we didn’t have the supplement.  Much of his brain development and developmental strides are coming because he’s getting the nutrition he needs.  Thank you, Jesus, for modern technology.

I may be a little proud when I tell you that Luke is smart.  Nah, it’s true.  He processes correctly so much of what we say and do.  Everytime he “gets” something, I pause in awe and think, “Did he just understand that?”  The initial outlook on Luke’s prognosis was so grim.  Even our experienced perinatologist didn’t think Luke would make it to 24 weeks in utero.  He made it to 36.  What an overachiever.  Luke’s life is a miracle and we’re so proud of his progress.

As we get ready to close out a month of thankfulness, I am thankful for the life lessons he’s taught us.  I’ve said it before, but I think it’s worth repeating:  He’s the toughest kid I know.