Monday, August 15, 2005

I went back to work today, my hours are 6a-2p. This will still allow me time with Jacob in the afternoon/evenings, while saving my maternity leave for when he is home. It was hard to go back, but I know it's what is best for right now.

Jacob was hooked up to another EEG today, beginning at Noon. It will run for 24 hours. He looked to be much calmer today, not near as many head/eye/mouth jerking movements. Hopefully that means the increase in the medication and/or the staggering of meds is working.

They are still trying to see if a lab in Portland, Oregon can do the testing with the spinal fluid, rather then sending it to Australia, so that is still pending. He is scheduled to have an EMG Wednesday morning. This is a test that is like acupuncture. It tests the tone in the muscles. Dr A. Johnson ordered this test be done because he's thinking his lack of muscle tone could be a factor with his shallow breathing.

So this week will be spent running more tests & hopefully we'll receive some of the previous test results back before the end of the week. Dr Jolley, the pediatric surgeon will be visiting us this week to discuss surgery for next week (most likely) for the G-Tube. They are also considering doing a muscle biopsy at the same time since Jake will be under anesthesia.

The geneticist came to chat with Kevin & I this evening about our family history to try & track down where this may be coming from. She concludes the same as Dr A Johnson has so far; based on our family history, this appears to be a 'recessive form' in that we are carriers the gene & it took the 2 of us to make this happen. She also reiterated that if that is truly the case, it's a 1 in 4 chance of it happening again. I'd say the odds are stacked against us.

Overall Status: Stable

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