tag:blogger.com,1999:blog-5505187301023634468.post7674097630808713484..comments2023-12-26T20:52:08.357+00:00Comments on The Sound of the Silent: No silver lining in this cloudThe Sound of the Silenthttp://www.blogger.com/profile/09669598042879486343noreply@blogger.comBlogger2125tag:blogger.com,1999:blog-5505187301023634468.post-53703741530525111142016-06-29T07:11:42.098+01:002016-06-29T07:11:42.098+01:00Elizabeth, thank you so much for your commiseratio...Elizabeth, thank you so much for your commiseration. It's a rare commodity around here where a moan or groan about extreme parenting tends to elicit the "considerate" suggestion of institutionalization. <br /><br />C. is actually taken care of through the summer since the ministry of education gives 21 year olds a bonus until the end of the academic year. (For special ed. that lasts until the third week in August).<br /><br />We found out that the cannabis dose our neurologist requested was actually identical to the one we have now. She forgot entirely to raise it! <br /><br />Next, we learned from the ministry of health that her paperwork arrived "unsigned". Now, I do believe the dear doctor when she wrote back to us that the documents were in fact signed. The ministry in turn says that faxing sometimes erases signatures. In any case, we are now back to square one (presuming our doctor resubmitted everything today as she promised to).<br /><br />We will undoubtedly be left high and dry for a while. My blood pressure - always problematic - didn't need any of this.<br /><br />Apparently, bad pressure sores can fester for ages but I am really wrung out from this one. The nurse took a swab to the lab and we've just learned there's a bacterial infection in it. So C. will probably start oral antibiotics today. <br /><br />C. is, thankfully, entirely benzo free. I realize, having read about Sophie's experiences, that I should be thankful that the weaning was relatively benign. But I had hoped for a bit of improvement in C.'s functioning after it exited her system and we've had no such luck. <br /><br />Aside from cannabis she only takes Valproic Acid.<br /> <br />I don't remember precisely but I believe her neurological fevers pre-date our introduction of Valproic and no doctor has ever been able to explain them. I am eternally grateful to the inventor of Advil Gel Capsules - paracetamol just doesn't work on her fevers. <br /><br />I hope you and Sophie weather the summer at home with a minimum of stress and even some fun times. (I just know you'll come up with great ideas for outings). Until what age will she be able to attend school? The Sound of the Silenthttps://www.blogger.com/profile/09669598042879486343noreply@blogger.comtag:blogger.com,1999:blog-5505187301023634468.post-62850949194488303502016-06-26T03:41:56.757+01:002016-06-26T03:41:56.757+01:00Oh god, this brings tears of frustration and angui...Oh god, this brings tears of frustration and anguish to my eyes. I am so sorry that you are juggling so many things and so many of them quite dire. I'm appalled that you have no other options than an institution or an abysmal daycare for C. Are there other parents that you could meet/band together and perhaps pool resources for some type of day camp situation? I'm sure you've thought of all these things -- I'm just worried about you, too. And what the hell is going on with the sore? And the marijuana dosing? Refresh my memory -- is C on a benzo still? Many years ago when Sophie was on Nitrazepam (an ancient benzo), she developed fevers that came and went. Do you think those fevers are related to her meds?<br /><br />In any case, I am thinking of you and abiding with you. If you ever want to talk offline, please email me. <br /><br />elsophieATgmailDOTcomElizabethhttps://www.blogger.com/profile/03313726816776097840noreply@blogger.com