The (long-overdue) latest on Sean

20 February 2011

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 …

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The latest on Sean – school time!

25 October 2010

We’re now full-on into autumn, which means a lot of things around Chez Anselmeau.  It means long-sleeved shirts and sweaters, added blankets and comforters.  It means hauling the fans down to the basement and bringing up the space heaters (Chez Anselmeau, you may recall, doesn’t have central anything).  It means worrying less about mowing the lawn and more about raking the leaves.  It means my lovely wife Nina starts making her should-be-legendary soups and her soft gingerbread cookies.  It means working on the Christmas gift list; we usually have our shopping done by early November.  And it means our daughter Charlotte starts asking to do more chores around the house, so she can earn Christmas spending money.

Most of all, around here autumn means school is in full swing.  Charlotte, of course, has been in class since late July, and Nina went back to work for the school district around the end of August.  But now – the best news of all – after waiting a year due to his Leigh’s disease, Sean has started school as well!

Well … sort of.

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The latest on Sean – summer edition

23 August 2010

Been a busy last few weeks for our Seanster Monster.  Doctors have been oohing and aahing over him … bureaucracies have been fretting …  and his family has been doing their best to keep him up and going (when they have the energy).  We’re now into Year 2 of his Leigh’s disease, and he continues to, slowly but surely, defy the odds.

Okay, details.  His 3 August appointment with his pediatrician went well – we transferred responsibility for his prescriptions over to her, and she increased his food intake from four cans of formula per day (1000 calories) to five (1250), with an eventual goal of 1600 calories.  Dr. Abraham has worked to make herself knowledgeable about Leigh’s and about Sean’s outlier status in relation to it, so we’re pretty pleased with her.  We set up a follow-up appointment for 3 September, and figured we were sitting pretty.

Er, not quite.

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