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A DAY IN THE LIFE OF SPENCE J. VITALIANO!
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2 DECEMBER 2008
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Dec 02, 2008 03:23pm (EST)
Well the tests showed Spence's eye movements, staring spells, rolling back & forth are all related to his Cortical Visual Impairment (CVI). However the neurologist opted to keep him on the seizure medication because his EEG was abnormal (like it always is) and he's at an extremely high risk of getting a seizure and they don't want him to get them.
So we scheduled a follow-up with Neurology to get to the bottom of the results and understand where to go from here. I'm not so sure the EEG gave us the clarification we were looking for or more questions - it's a toss up.
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Posted by Spence | Comments: (1) | Permalink
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12 NOVEMBER 2008
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Nov 12, 2008 08:01pm (EST)
Well 6 am and the Respiratory Tech informed us the testing was complete. Unofficially he said Spence may benefit from BIPAP rather than CPAP. He said Spence is having Central Apnea spells at night, he was able to get his sats to 100% by increasing his O2 to 1/2 liter of flow through the night. He told us to wait for the doctor to contact us and he expected that the doctor would want another sleep study to determine additional information. So now we're researching something new - seems like a constant thing with Spence. By the time he's a teenager I mine as well have went to med school - LOL!!
He had a uneventful day and isn't as sleepy today as he has been which is positive. The nurse practitioner from the neurology clinic talked to me about Spence's status the other night and about his seizure last week. She's concerned that if he stays sleepy until this weekend (which he isn't now) or if he has more seizures they may need to use another seizure medication. I asked her more about the EEG and how bad it really was and she said he was seizing up on every frame of the EEG test which was a 20 minute test. She said according to the EEG their was no way he could have been developing effectively since his brain was seizing so much. We've seen a significant improvement in his development, head control, trunk control, & attention span since they started him on the medication so I'm very hopeful for him.
Only time will tell - Spence is clearly getting the best possible care any parent could ask for. Thank God we're near CHOP.
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Posted by Spence | Comments: (1) | Permalink
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10 NOVEMBER 2008
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Nov 10, 2008 07:50pm (EST)
Spence's Endocrinologist called me tonight and says the results of the CRH test say he's fine and that he's producing the hormone properly which is really good because that would create more long term problems otherwise.
Also I haven't really mentioned it but we've been slowly weening Spence off his Reglan and he's now down from 4 doses (QID) to once per day and doing great so far.
Today we got an appointment date for the Feeding Clinic at CHOP as well which will help us determine a plan to start his oral feeds. I'm sure they'll want to schedule a swallow study.
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Posted by Spence | Comments: (0) | Permalink
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