February 28, 2014 (Friday), 12:37 p.m., C.S.T., Nashville, TN.~

Faye B. Emerson here.  

I hope this finds you all well and happy.  We are doing good; for a while, it was not a good time for Nicholas, but things have finally straightened out and he's happily doing much better (for the most part).

Nicholas, our youngest son, has special needs that have left him dependent on a wheelchair (he can no longer walk) and nourishment via a gastrostomy (G-tube, which goes directly to his stomach); he can no longer feed himself.  It is the monster called Canavan disease; it's robbed him of his sight, his ability to talk, and his ability to walk and feed himself.  Yet we do everything we can to keep him as well as possible and to help him live another day.

So far it's working.  I am praying with all my heart that this continues.

It's not easy caring for a child with so many problems, but it's better than having him languish in an institutional or hospital setting, which is often understaffed and patients are often left neglected or getting shoddy care.  So Trent and I take care of him at home, in addition to our two oldest children, our daughters, Renate and Ellen.

And Nicholas has already outlived doctor's predictions by several years.  They said he wouldn't live to the age of four.  Well, it's like Nicholas has the last laugh on all of them because he's still here.  He'll be ten on July 4th; he's our miracle boy, and we couldn't be happier.

Back to the "while" mentioned above.  Nicholas was having intractable (uncontrolled) seizures; several times they were so bad he ended up going to the hospital or getting pneumonia because he choked (he cannot swallow his saliva easily); the last time he was in he nearly died after suffering a Code Blue; his heart and breathing stopped.  Scared the holy hell out of all of us; but thank God the doctors and nurses got him back.  Ever since, we have watched him like a hawk, especially now during this cold/flu season.  So far he hasn't been sick (not even as much of a sniffle), which has been a huge answer to prayer!

But now we got everything straightened out, and Nicholas is healthier than he's ever been.  

Well, I hate to go, but Nicholas's feeding pump is chiming again; it must be about time to unhook him and let him nap for an hour or two; he always gets sleepy after his "feedings".  I will write in here again; hopefully it won't be such a long while between postings.  Sorry about that.  There's not much free time caring for three kids, including one with severe medical problems!  Take care and God bless; this is Faye Emerson signing off!

~Faye.  :)