The (long-overdue) latest on Sean

I know, I knowIknowIknow – I’ve been promising to give an update on my son Sean’s continuing fight with Leigh’s disease for a while now.  I apologize for the delay, but I do have an excuse.  Namely, every time I plan to write it, some new development appears to be on the horizon, and it seems right to wait so I can give you fuller information.

But there’s a limit, and I’ve really waited far too long (I want to say it’s been four months since the last recap).  Thank you to all who have been praying for him all this time – it has meant more to me, and to Sean, than I can express.

And now, the news …

Continuing to defy all doctor’s expectations, Sean just keeps getting stronger.  Lately he’s been practicing walking with less assistance (me only holding one hand instead of both, or with my hands on his shoulders.  He’s able to scoot along on his rear, using his hams and feet, if I hold his hands; he can sit up from a prone position with no assistance; and can hold himself on hands and knees for up to nine minutes at a time (up from four or five a few months ago).  Even his posture is improving – he’s not as prone to hunching over while sitting as before.  He’s still got a lot of problems with balance and consistency, but less than he’s had.

Hand coordination is lagging behind still, but even that is getting better.  If you guide his hands and keep him focused, he can stack and unstuck blocks, pick up and put down small objects, and follow simple orders (“don’t wipe your nose with your hand” is a common one).  He now joins the rest of the family for dinner every day, and can eat whatever’s small enough to be pushed past his lips – he still can’t open his mouth easily.  He even smiles more (and more obviously) and holds eye contact.

More and more, he makes what noise he can (since the mouth-opening is still a no-go, he’s having to get by with humming), and we’ve developed a basic communication system of humming for “yes” and staying silent for “no,” so he can make (some of) his feelings known.  One thing we’ve found through this: he actually likes his daily exercise regimen (all the stretching, sit-ups and the like) – whenever I’m tired and asking him if he wants to do it, he gives me a clear “mmmm!”  And who am I to argue?

All of the above, however, comes with the caveat, “when he wants to.”  It’s easy to forget in the midst of all this that Sean is still a seven-year-old boy, and can be as willful as any other seven-year-old.  Sometimes he just doesn’t want to play “pick up the letters”/hold still/take a bath/listen to what you’re saying (take your pick).  Add to that the frustration of being unable to move and act as he did pre-illness, and that he’s often tired lately due to yet another growth spurt. I can’t say I blame him, can you?  But by and large, he keeps on trucking – and we do our best to keep up.

And that’s right – Sean is SEVEN now, having celebrated his birthday last month.  He got a raft of loot, including a clock radio/CD player, the complete set (so far) of What’s in the Bible kids’ videos, and almost a whole new wardrobe – five pairs of pants, a couple of sweaters a polo shirt, a jacket, several pairs of socks and some big fluffy slippers.  (The last two were from his big sister; Charlotte took out the garbage for several weeks to earn the money for them.)  And he got hot dogs for dinner, which he enjoyed.

What else has been happening?  Well, doctor’s appointments, lots of them.  He’s had a full pediatrician’s checkup, two visits for flu shots, a trip back to Oakland to see his old rehab specialist at Children’s Hospital, an inspection of his wheelchair, and several others I’m forgetting at the moment.  In all cases, of course, he’s checking out far better than expected.  He’s also changed gastroenterologists (there was no way to get a timely appointment with his old one in Oakland – 70 miles/110 km away – and the new one actually does clinics in Stockton), and the new GI man saw him in January and likes his progress.  And he continues his weekly physical therapy visits, though due to lack of early progress (not enough state-mandated goals met, alas) his occupational therapy appointments have been reduced to once a month for now.

Home-schooling is continuing, and going well.  He got a new teacher last month, when the previous one came back from winter break to find that the district had dropped seven new kids in his case file and had to let us go.  Turns out the new fellow is someone Nina and I knew from years back, so it was a surprisingly smooth transition.  Sean clearly knows all his letters and numbers, and can put together a lot of other information.  Despite the lost year, he’s not far behind most kids his age in knowledge, even if he can’t always express what he knows.

Coming up in the next few months, Sean gets yet another new doctor in March – his previous pediatrician retired – and sees the gastroenterologist in April to get the feeding tube into his stomach replaced (it’s getting a little yellow and stiff).  We’re awaiting approval for him to start formal feeding therapy once a week at the local county hospital.  The rehab specialist has suggested starting some basic toilet training, while the home-instruction teacher would like to get him into the district’s school for kids with developmental disabilities come fall.  (We’re taking both under advisement for now.)  And his daily walks around the block in his walker (well, every day we’ve got time in the afternoon, and it doesn’t rain) have gone so well that I’m thinking of expanding them from four blocks longs to six once the weather improves.  The goal is to reach nine by the end of the summer, so that we can make a round-trip to the local feed supply/pet store – he always liked looking at the goldfish and baby chickens …

But I truly believe none of this can happen, just as none of the previous happened, without God’s help – and that involves the consistent prayers of His people.  Thank you again to all who have lent their support through prayer (and otherwise), and I hope you’ll continue in the future.  I keep reminding myself that it’s a marathon, not a sprint – so please, keep handing us those cups of Gatorade as we run!

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One Response to The (long-overdue) latest on Sean

  1. Crystal says:

    I had to look up Leigh’s disease because I was not familiar. Praying through my tears right now. I have a seven year old boy…I can’t imagine. Add me to list of those who lift Sean (and the rest of the family) up to the Father.

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