Beating the odds

(to the tune of Frère Jacques)

Owen Keith Marshall
Owen Keith Marshall
Brave and strong
Brave and strong
Mama's little warrior
Mama's little warrior
Will beat the odds
Will beat the odds

I find myself humming this several times a day. Owen knows it well- I've been singing it to him now for a couple of months.

The ACTH injections seem to be working. The physical manifestations of the seizures ceased completely after the second injection during our inpatient stay at Children's last Tuesday. We (Owen, Janet and myself) were there for two days and one night - to provide training to me so that I can give him the injections each morning and to provide 24 hours to observe Owen to make sure he had no immediate side effects. We're on day seven of the treatment with 7-14 more to go. The number of days will depend on the results of the EEG...

...which Owen is having next Tuesday morning. As Owen's neurologist said, "Clinically we are treating "spasms", but it is the brain function abnormalities (i.e. hypsarrythmia) that we really want to cease." The EEG will tell us if these abnormal patterns have been eliminated as well. It seems the EGG is becoming an every other week event for us. What is it like? We enter a dark room. The techs mark on Owen's head with a red crayon-like pencil where the leads will go and then with a substance that resembles pomade, they attach each lead, wrap his head in gauze and prop him up on a pillow. I guess it is apropos, given that Children's is a teaching hospital, to say that he looks a bit like a science experiment. I don't like it that well at all, but somehow you grow used to it - such as you do giving your child an injection.

Thank god for steroids (ACTH). Seriously. They've given us our old Owen back AND they've made him a hungry little boy. He's steadily gaining weight again. Which reminds me to say that we didn't have the feeding tube inserted. Leslie suggested we ask about this once we were at Children's as it was her thought that it would not be good timing since ACTH affects the body's ability to heal wounds. When we asked the Attending neurologist about this, they confirmed this was the case. For now, though, it is not needed and we are so very, very, very happy about that.

From the windy, rainy, flooded Kitsap Peninsula,

S/K/O