Good morning wonderful people! Right now Phillip and I are. at Physical Therapy. He is riding the stationary bicycle as I am typing this on my tiny android keyboard. (his activity sounds like a LOT more fun!)
After this we are heading back to the house- because I (Mother of the Year) forgot the one sheet the Dr told me NOT to forget.) And then heading to Duke to have 2 things done.
First he will be having his photosensitivity test done: I know you are thinking "But I thought he was having that done on Tuesday?" As it turned out, he didn't have it on Tuesday because they said it would be pointless when he was already sedated. (I didn't think about that...) So he said we would do it today. Then the 2nd thing they will do is remove the leads.
I am very anxious that the strobes will send him into a seizure (I brought his VNS magnet and emergency meds just in case).
Having the EEG leads removed is more stressful to Phillip than having them put on because he is asleep when they put them on and awake when they take them off. :-( Its like torture for him because he HATES to have his hair messed with!
Anyway, if you would please send good thoughts/prayers - whatever you beleieve in - our way I would appreciate it greatly. I am not praying for no seizures necessarily - because if the sun on the water, or having his picture taken is causing seizures (like I suspect) then I want to know about it- so I am praying that IF that's the case that he will have a mild and manageable seizure.
Obviously I hope that's NOT the case... I hope that he's not having seizures during his favorite activity (swimming) but it definitely seems like he is ... ABOUT TUESDAY:
Tuesday (when we had the MRI, etc done) was awful. They had us come in half our early (I thought to get his IV and stuff ready before his MRI time) ... but NO. We sat and waited until after his appt time... then they took us to his room.... where we waited forever for them to even put in his iV. THEN they had no clue that he was supposed to be having an ABR done - even thought there are signs all over about Maistro (sp?) the new computer system "one patient, one chart"... So I am not sure how they didn't know about MY one patients testing schedule for the day. But at any rate, they finally got everything finished well after 5 pm.
We wont get his MRI results for a while but his ABR was the same. No change in his hearing which is good but sad that it's not better.
I have to go head for Duke now... hope I didn't ramble too much. I will post later and let you all know how the photo test goes.
Thanks for all your prayers and support.
*misty*
After this we are heading back to the house- because I (Mother of the Year) forgot the one sheet the Dr told me NOT to forget.) And then heading to Duke to have 2 things done.
First he will be having his photosensitivity test done: I know you are thinking "But I thought he was having that done on Tuesday?" As it turned out, he didn't have it on Tuesday because they said it would be pointless when he was already sedated. (I didn't think about that...) So he said we would do it today. Then the 2nd thing they will do is remove the leads.
I am very anxious that the strobes will send him into a seizure (I brought his VNS magnet and emergency meds just in case).
Having the EEG leads removed is more stressful to Phillip than having them put on because he is asleep when they put them on and awake when they take them off. :-( Its like torture for him because he HATES to have his hair messed with!
Anyway, if you would please send good thoughts/prayers - whatever you beleieve in - our way I would appreciate it greatly. I am not praying for no seizures necessarily - because if the sun on the water, or having his picture taken is causing seizures (like I suspect) then I want to know about it- so I am praying that IF that's the case that he will have a mild and manageable seizure.
Obviously I hope that's NOT the case... I hope that he's not having seizures during his favorite activity (swimming) but it definitely seems like he is ... ABOUT TUESDAY:
Tuesday (when we had the MRI, etc done) was awful. They had us come in half our early (I thought to get his IV and stuff ready before his MRI time) ... but NO. We sat and waited until after his appt time... then they took us to his room.... where we waited forever for them to even put in his iV. THEN they had no clue that he was supposed to be having an ABR done - even thought there are signs all over about Maistro (sp?) the new computer system "one patient, one chart"... So I am not sure how they didn't know about MY one patients testing schedule for the day. But at any rate, they finally got everything finished well after 5 pm.
We wont get his MRI results for a while but his ABR was the same. No change in his hearing which is good but sad that it's not better.
I have to go head for Duke now... hope I didn't ramble too much. I will post later and let you all know how the photo test goes.
Thanks for all your prayers and support.
*misty*