Guest guest Posted October 21, 2011 Report Share Posted October 21, 2011 Katy She is well. I guess my only advise is the same as I always give: Follow your gut. Don't be talked into anything until you are sure. We waited over 2 years. It took the right doctors, hospital and gut feeling until we said yes. If they let you go into the OR go. But, that is the hardest moment you'll ever face. As my daughter went under and they said I could kiss her I physically collapsed in the OR. The nurse seemed ready for that and guided me out. Get Xanax or something like it for yourself or you may not make it through the hours of waiting. If you have ANY questions ask. I can only give you my experience, but I'll give it to you honestly. Sent from my iPhone > Hi > > Thanks for replying. We live in Leeds in the north of England. Most likely if she has it it'll be done here. > > I've just read your post about your daughter. What fantastic news that she's doing well. Is she well at the moment? have you any advice? > > Thanks > > katy (and Jenna :)x > > > > > > > Hi > > > > > > I've just spoken to our epilepsy nurse and confirmed a date to meet our neurosurgeon and neurologist. Jenna, my one year daughter has right-sided PMG, 15+spams daily plus absenses, jerks etc, severly sight impaired and slightly low tone in her trunk and left side. > > > > > > I'm hoping maybe as parents and family members of PMG kids if you have any advice on what questions i could ask at the meeting. I'll probably take my mum with me but i'd like someone else's perspective who's situation is similar. > > > > > > Thanks > > > > > > Katy (and Jenna :-) > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2011 Report Share Posted October 22, 2011 Katy, As one of Mysha's doctors reminded me - the decision to wait or do nothing is a decision. There is nothing wrong with that decision. You have to be ready for this! R. Holman PADI OWSI #193832 Subject: Re: Pre-surgery prep To: polymicrogyria Date: Saturday, October 22, 2011, 4:54 PM Â I'm really pleased she's doing well. Thank you so much, i think i needed someone to tell me to listen to my gut. Our appointment is on the 31st so I've decided not to think about it until the end of next week. If i keep going over it i'll never sleep. I realised this week that the past nine months surgery assessment, daily therapies, appointments has been the easy bit. If i'm being honest i'm absolutley scared stiff. If it's ok can i email you next week with my list of questions i'm thinking of asking? Hope your having a good weekend :-) Katy (and Jenna)x > > > > > > > Hi > > > > > > > > I've just spoken to our epilepsy nurse and confirmed a date to meet our neurosurgeon and neurologist. Jenna, my one year daughter has right-sided PMG, 15+spams daily plus absenses, jerks etc, severly sight impaired and slightly low tone in her trunk and left side. > > > > > > > > I'm hoping maybe as parents and family members of PMG kids if you have any advice on what questions i could ask at the meeting. I'll probably take my mum with me but i'd like someone else's perspective who's situation is similar. > > > > > > > > Thanks > > > > > > > > Katy (and Jenna :-) > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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