The latest on Sean – the struggle continues …

First (and last, and middle), thank you to everyone who has been praying for my son Sean for the last 2½ years in his battle against Leigh’s disease, and praying for us as we battle alongside him.  It’s been a long, hard, tiring struggle, and will continue to be one for … well, as long as it takes, I guess.  But we know that we wouldn’t have gotten this far without the help of God – or of our circle/cloud/polygon of friends who have stood by us in all this.

It’s been about four months since I last wrote, so I suspect you’re probably wondering what changes have taken place over that time.  And the answer is … well, not a heck of a lot, actually.

Not that nothing has happened, but as far as his general health, he’s not too far past where he was back in October.  His walking and overall balance have improved a little, but the improvements tend to come and go.  His jaw appears to be loosening up a little, and while it’s hard to tell, his swallowing reflex seems a bit better … we think.  (It’s hard to tell with swallowing.)  One thing that’s clearly doing better is his sleeping – he’s going to slumberland earlier and sleeping sounder, and the days of having to quiet him down and lie him down again at 10 or 11 at night appear to be in the past.

But these are small, incremental changes.  In the main, the Seanster Monster has reached a plateau.  This has happened before – he needs time to consolidate his gains before taking the next leap forward.  We’re looking forward to that leap.

As promised in the last letter, Sean is no longer going to school with a wheelchair – we started keeping it home after the Thanksgiving break.  Nowadays, I just help him step out of the van at Walton Special Center, put on his backpack (which he dislikes, probably because his center of gravity is about a foot behind him, so a backpack just makes it harder) and turn him over to Mr. Cornelison, his teacher.  Same procedure in reverse when it’s time to pick him up.  He still seems to be enjoying school, although the novelty has clearly worn off, and sometimes he’s reluctant to head out the door in the morning.

We’re also working with him on having him walk around the house unassisted, and going up and down stairs with less assistance.  Some days he has a hard time, and some days he’s off like a shot … well, maybe a rubber-band shot.  Last Tuesday we had one of the former, when it was time to go down the front stairs to get in the car and head for school.  We’ve been practicing having him use both hands on the handrail to ease himself down each step.  Well, that morning he didn’t want to use both hands; no matter how many times I guided his left hand to the rail, he pulled it away.  Finally, he decided to just take off without me … and spilled all the way down the steps, landing sideways at the bottom.  No major injuries, but he does sport a small bruise between his left eye and temple.  (That’s why the attached picture was taken from his right.)  He also got a short lecture from Daddy on “that’s why you need to do what I tell you, so you don’t get hurt.”  Which he has taken to heart; he’s been using both hands since.  I’d be more worried, except that he acquired the nickname of “Bruiser” long before he ever got sick, just ‘cause he was so gung-ho and heedless of obstacles.  If anything, we consider this a partial return to normality.

Christmas, however, was one of his better days.  We always celebrate Christmas with Nina’s parents, and they’ve been very accommodating with Sean’s feeding times and other idiosyncrasies.  At one point in the afternoon, he was sitting in a chair and decided he wanted to explore. So he slid off the chair, got his legs under him … and off he went, me trailing behind to help with turning and to catch any falls.  But there were no falls.  He shuffled from the kitchen to the den to the living room to the hall to the kitchen again, then took a detour down the hall to the master bedroom, the came back to the kitchen and did the first circuit again.  And all the time, his Mom and Grandma were … well, “freaking out” from excitement.  Heckuva Christmas present.

January marked Sean’s eighth birthday, and he got a decent amount of loot – the two newest What’s in the Bible? videos (a favorite of his) and a blanket from Mom and Dad, a sweater from Grandma and Grandpa, and some clothes from other relatives.  Dinner was hot dogs and potato wedges, and he got tastes of both.  “Giving him a taste” still involves tearing off a small piece and pushing it past his lips and behind his front teeth, but we have been able to give him slightly larger pieces lately – more like two cubic centimeters instead of one.  Chocolate (any kind) and roasted or fried chicken are his absolute favorite foods; his least favorite is anything spicy.

In short, slow growth is the order of the day, but considering he was supposed to be dead two years ago, we’ll take it!  And we don’t believe this happened without God’s intervention, and your intercession.

In addition to your prayers for Sean, there’s a little something extra that we’d like you to ask God for us.  With Sean’s illness requiring so much care, plus my wife’s job as a substitute teacher running her from pillar to post, I haven’t been able to do much job hunting the last few years.  With Sean in school, I still need to be available to transport Nina, Charlotte and Sean to and from three different schools every weekday, as none of them can drive and the local bus system isn’t adequate to our needs.

However, Mr. Cornelison has said he wants Nina on his staff at Walton, and just needs to get the funding from the school district for a new position that she would fill.  And, next door to Walton is Kohl Open School, a program for high-achieving students like, well, Charlotte.  We applied to Kohl and got her name into their lottery for open spots (yes, they do a lottery!).  When they held it in December, she was picked … as alternate #4, which means she can go there only if at least four of the kids chosen ahead of her don’t end up going.

The key is, IF Nina can get a job at Walton, AND Charlotte can get into Kohl, THEN I can drop them all off together in the morning and go to work, either picking them up and taking them home on my lunch break or having them take a bus home together.  In the meantime, I can be earning an income and getting us back above the poverty line.  So that would be nice.  And so we’d ask you to pray for God’s will in this matter, because we don’t want what He doesn’t want.  But boy, would it be nice if this is what he wants.

Take care, and again, thank you for supporting Sean and all of us.  We couldn’t do it without you, and I’m so grateful we don’t have to!


One Response to The latest on Sean – the struggle continues …

  1. Unfortunately, I didn’t end up going to Kohl.

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