The latest on Sean: full time and getting stronger

For all of you who have been praying for my son Sean for the last two years in his continuing battle against Leigh’s disease, I want to give you my thanks.  I also want to apologize, as it has been five months since I’ve given you a full post on Sean’s condition.  Things have been busy here, but not THAT busy.  But now, with him in school full-time, I have extra time (and extra incentive) to fill you in on the happy details.

Yes, you read that right – Sean is now, finally, in school.  Not just home instruction; actual, six-hours-a-day, I-have-to-get-him-there-by-8-o’clock SCHOOL!  And therein lies a tale …

In my last communiqué in February, I mentioned that Seanster Monster had a new home-instruction teacher.  Home instruction is Mr. Cornelison’s side job for the local school district; his regular job is at Walton Developmental School, a school specifically for kids like Sean who have severe physical disabilities.  Once he got an idea of Sean’s cognitive abilities (still pretty sharp, just hard for him to express), he began recommending Walton, assuring us that it would not only be something Sean could handle, but something Sean would enjoy.  It took a while to convince us – we’d gotten used to being awfully protective – but finally in May we visited the school, sat in the classroom for an entire day to observe … and liked what we saw.

The upshot is that Sean began attending Walton part-time (four hours a day, three days a week) during summer session.  Once he proved he could deal with it, we made arrangements for the coming school year.  And last week, he began going to Walton full-time as an honest-to-goodness first-grader!  Most of the kids in his class are far more severely disabled (with illnesses like cerebral palsy and Down syndrome); Mr. Cornelison has told us that the day he showed up, he was already the most advanced scholastically.  And in addition to the three R’s, the Walton staff also works with him on physical, communication and occupational therapies, so he’s getting the rehabilitative support he needs.

All of that means that he comes home each afternoon pretty tired, so we’ve discontinued the daily exercise we’ve been doing at home – now we just do it on weekends and holidays.  He’s made so much progress, though, that we aren’t worried.  He can walk up to eight blocks (over half a mile) in his walker, and over three blocks (a quarter-mile) without it, just me keeping him balanced.  His hands are working much better, and he’s able to grip and manipulate things fairly well.  His overall strength has improved, too – he’s just better able to move his body parts around when he wants to.

His continued recovery has meant that doctor’s appointments have become little more than checkups – M.D.s aren’t inclined to tinker with something that’s working, even if they don’t know how or why it’s working.  ;)  The only change on that score has been a disappointing one: we got approval for feeding therapy at the county hospital, only for the feeding therapist to basically quit on us after a session and a half because she couldn’t figure out a way to cope with Sean’s inability to open his mouth on cue.  (This person, who shall remain nameless, has the title of “speech therapist,” and we had previously gone to her for that … only to have her tell us halfway through her evaluation of Sean that she doesn’t do speech therapy.  I’m not sure what she does besides make excuses and pull a government salary.)  Needless to say, helping him work his jaw and tongue muscles is the top priority right now, for both us and the Walton staff – it’s just a matter of figuring out how to do it without getting bit …

When Sean was born – a bit premature, and less than a year after Nina and I reconciled following a rough separation – we started referring to him as “the miracle baby.”  He was the unplanned pregnancy that we nonetheless welcomed, the kid who started out behind the 8-ball and fought his way forward.  Well, now he’s “the miracle boy,” still fighting back against the effects of a fallen world.  It seems like, for the first time in two years, he’s almost as close to being the boy he was before as he is to being the “rag doll” we thought we’d be saying goodbye to in the fall of 2009.  We’ll take our miracles where we can find them.

And we know that miracles don’t happen without people asking God for help.  To all who have prayed for Sean and continue to pray for him, we owe you a debt that we can never repay.  All we can do is say thank you once again, and ask that you keep interceding for our beautiful boy.

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5 Responses to The latest on Sean: full time and getting stronger

  1. Sue says:

    Yay Sean!!!!

    I bet he’s so excited to be in school. That is just so fantastic. God is great and you and Nina are awesome parents. Charlotte is pretty wonderful herself.

    Thanks for the update Ray. It made me smile!

    Hugs,
    Sue

  2. Lori Knutson says:

    Glad to read your update. That is SO GREAT he’s in school; he is defying all odds. As we both know from all of the research out there, nobody with Leigh’s disease is supposed to get better, and yet Sean is. That is truly a miracle!

    Continuing to hold your family in my thoughts and prayers,
    Lori

  3. Pati Mc - Auntie says:

    Thank you for the update with pictures. It is all so great to hear. It is also fun to see my family. 1/2 a mile way to go. School and a teacher who would back you and lift you up.

    I expect it really upends your life in a very different way and it will be fun to see what God will do with you next.

    Loves your Aunt Pati Hugs

  4. […] thing keeping me from nabbing a full-time job (well, that and the economy continuing to suck).  With Sean in school now, that means that we have to get three people (Nina and both kids) on the road in the morning and […]

  5. Mable Cabral says:

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