Guest guest Posted August 11, 2008 Report Share Posted August 11, 2008 I am so glad I found this group - you've all been so helpful. Thank you for sharing your experiences with me and helping me decide how to move forward with my son's BPES. I am starting a photo album of my son entitled "" - we're officially part of the community! THanks again for all of your advice and support. From: Caroline Obbard <cazobbs@...>Subject: blepharophimosis Re: Sling Surgery - Do eyes blink and close properly afterward?blepharophimosis Date: Friday, August 8, 2008, 7:58 AM However I also know non-BPES enhanced children who sleep with their eyes slightly openCaroline>> Rob,> it sounds like you are on top of the situation! Our Ethan had his sling surgery at 6 months. He is now 13. We have never had the dry eye issue. He can blink, and close his eyes. The only thing I have noticed is when he sleeps his eyes tend to have a very small opening instead of shutting completely. Best wishes for you and your child. I hope the decision becomes easier as you get more information!> > > Emalee Barrow> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2009 Report Share Posted October 31, 2009 Thanks Matt! Tell your 10 year old that I apologize for the potty mouth. I will take that out immediately. Thank you also for the info on the weird tastes. I've noticed that lately. Good to know it's the drugs! Keep fighting! From: [mailto: ] On Behalf Of mtmaynor@... Sent: Saturday, October 31, 2009 11:57 AM Subject: Re: [ ] Thank you everyone! : Very nice blog like that you were informative and enlightening to people who may not know much about CML or have not been touched by it....but my 10 year old wondered why you put in some questionable words, like sh*t. A couple of words of advice for your first few weeks of Gleevec. Please try and remember to wash your hands like a surgeon. wash the fronts, then the backs, then between the fingers and finally the fingertips and nails. It will help you avoid whatever is going around. If you have muscle cramps and bone pain, I have found that heat helps me the most. I am not a big fan of hot tubs (especially public ones that have multiple germs) but heating pads and the warming pads you put in the microwave work best for me. You may also find an unpleasant taste in your mouth and simple brushing or mouth refreshing gum would clear that up for me. I also found that I was more prone to smells and I put a simple diffuser I got at a home goods shop in my office to help. Always try and get plenty of rest and don't be scared to exercise as that will actually bring you some good benefits. Good luck and God Speed! With warm regards, Matt Florida This message (including any attachments) contains confidential information intended for a specific individual and purpose, and is protected by law. If you are not the intended recipient, you should delete this message, and please advise me of your receipt. Any disclosure, copying, or distribution of this message, or the taking of any action based on it, is strictly prohibited. In a message dated 10/31/2009 11:52:37 A.M. Eastern Daylight Time, ryan.romero@... <mailto:ryan.romero%40callfusion.com> writes: www.shootforthecurewww.shootfwww.s Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2009 Report Share Posted October 31, 2009 Thanks Sharon! I think you just have to create a username and password.... To tell you the truth.... I don't think I have ever commented on my own comments! J I'm thankful you at least took a look! Have a great day everyone! From: [mailto: ] On Behalf Of Serenity Sent: Saturday, October 31, 2009 1:39 PM Subject: Re: [ ] Thank you everyone! , I joined your followers on your blog..Not sure how to post a reply to messages though..I tried and it asks for some kind of sign in to an account to google or some other type thing and I don't have any of the options it listed.I am only on .I will read the posts but won't be able to comment..Hope you are doing well.. SharonS > > Thanks Matt! > > > > Tell your 10 year old that I apologize for the potty mouth. I will take > that out immediately. Thank you also for the info on the weird tastes. > I've noticed that lately. Good to know it's the drugs! > > > > Keep fighting! > > > > > > From: <mailto:%40> [mailto: <mailto:%40> ] On Behalf Of > mtmaynor@... > Sent: Saturday, October 31, 2009 11:57 AM > <mailto:%40> > Subject: Re: [ ] Thank you everyone! > > > > > > : > > Very nice blog like that you were informative and enlightening to people > > who > may not know much about CML or have not been touched by > it....but my 10 year old wondered why you put in > some questionable words, like sh*t. > > A couple of words of advice for your first few weeks of Gleevec. Please > try > and remember to wash your hands like a surgeon. wash the fronts, then > the backs, then between the fingers and finally the fingertips and > nails. > It > will help you avoid whatever is going around. > > If you have muscle cramps and bone pain, I have found that heat helps me > the most. I am not a big fan of hot tubs (especially public ones that > have > multiple germs) but heating pads and the warming pads you put in the > microwave work best for me. You may also find an unpleasant taste in > your > mouth and simple brushing or mouth refreshing gum would clear that up > for > me. I also found that I was more prone to smells and I put a simple > diffuser > I got at a home goods shop in my office to help. > > Always try and get plenty of rest and don't be scared to exercise as > that > will actually bring you some good benefits. > > Good luck and God Speed! > > With warm regards, > > Matt Florida > > This message (including any attachments) contains confidential > information > intended for a specific individual and purpose, and is protected by law. > > If you are not the intended recipient, you should delete this message, > and > please advise me of your receipt. Any disclosure, copying, or > distribution > of this message, or the taking of any action based on it, is strictly > prohibited. > > In a message dated 10/31/2009 11:52:37 A.M. Eastern Daylight Time, > ryan.romero@... <mailto:ryan.romero%40callfusion.com> > writes: > > www.shootforthecurewww.shootfwww.s > > Quote Link to comment Share on other sites More sharing options...
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