[Update July 08 – Chelsea is living at Mosaic. We see her fairly often and she gets to go visit or go to Wendy’s with my kids and grandkids regularly, which she thoroughly enjoys. She walks much better now, and very enthusiastically, though she needs helpers on both sides. She continues to have seizures, but eats “real” food and has a personality style that might be described as “benevolent turkey.” She’s a lot of fun.
May, 2008 at Arby’s – Here’s Chelsea playing a shoulder-shoving game with Grandpa Phil.
Chelsea was named after a park. Pretty cool, huh? So, as with her park-namesake, her name is pronounced “Chelsa” – like Chelsea Park in Santa Monica, CA.
“Chelsea is broken,” her brother said when they were both very young.
Chelsea was born with a very rare brain deformity, two of them actually (pachygyria lissencephaly syndrome with subcortical band heterotopia). She doesn’t know that, but she suffers the consequences – the worst of which are lots and lots of seizures.
She finally learned to walk and talk, and got moderately good at both by around age eight. She could spell her name, count to ten, run (sort of), and make lots of friends.
Then she started back downhill physically. But she is very stubborn – which has surely contributed to the fact that she is still with us at age 19! And she is still making friends.
And in spite of having an immeasurably low I.Q. she still has her opinions – expressed with grunts, scowls, eyebrows, pointing, shouts, smiles and laughter. And frankly, almost always her inarticulate opinions clearly have more rational consistency in them than some of the opinions we hear publicly from persons of much higher ability and education.
This week we’re going with Chelsea to Immanuel Hospital in Omaha where on Thursday July 20th she will undergo the most massive trauma of her trauma-filled life – spine surgery, to correct very severe curvatures with metal rods and fused bone. That little spine will get worked on from both front and back – not easy to contemplate. She doesn’t know that’s coming, either, although she’s been in on many of the consultations and conversations.
But she has met the surgeon and she really likes him.
He and others have told us that the alternative to this surgery is “a terrible way to die.” So we are opting for the surgery, in hopes of making her remaining years much less painful and much more enjoyable.
Chelsea would have died years past if it weren’t for government(s) having stepped in with a great deal of money year after year. And while Blue Cross Blue Shield gets a lot of bad rap (deservedly so, it seems) there is much credit due there too, at least in this case.
But as you can imagine, a great deal of credit goes to Chelsea’s mom and Chelsea’s brother for their selfless investment in “The Kid” through the years. And there are numerous medical people, caregivers, teachers, church workers, and friends of all kinds who have cared much for Chelsea and have been regarded by her as delightful, important people, the lights of her life.
Your prayers for her will be appreciated in the next few days. Thanks for reading this. I have a hunch Chelsea would like you.[Cross-posted at StreetProphets.com]
UpDate 1 Friday July 21
The surgery took a full ten hours. Chelsea came through pretty well, with no problems developing. Today she has a lot of medication on board, and is still not comfortable (duh!). But they moved her out of intensive care this morning and seem pleased with her progress. They expect her to be hospitalized maybe up to ten days. We appreciate all your interest and prayers. She would too, if she understood. She is a responsive and connecting person when she’s not overwhelmed by pain.
UpDate 2 Friday July 28
This is the 8th day out from surgery. Chelsea is pretty happy, and looks good. The surgeon is quite pleased with how the incisions look. Everything has been a bit slowed down and complicated by Chelsea’s birth-handicap, meaning she cannot tell us where it hurts, she can’t eat sometimes, she cannot respond to instructions.
Her veins are small and fragile so she “used up” the potential IV spots on her arms in two or three days. So they went to one on her foot which they did not expect to last; but it is still working. They had – belive it or not – specifically asked the Chaplain to pray about that IV, and to ask some others to pray. And the nurse who visits us each morning actually said the praying is obviously doing some good. Of course, so also is the expert and caring attention Chelsea has been getting all along.
This morning Dr. Longley said he is aiming for Monday morning to send her home. So this initial very rough phase of Chelsea’s most excellent(?) adventure is apparently soon to move into the much more normal next stage.
We certainly appreciate all the good thoughts and prayers that many have invested in this “adventure.”