Guest guest Posted May 6, 2004 Report Share Posted May 6, 2004 my goodness Leah your son Ethan has the biggest, most wonderful blue eyes, (I think they are blue) the doctors have done wonders, what is it they did exactly?? Tonikka -----Original Message-----From: sxyme32002 [mailto:leahs_male@...]Sent: May 6, 2004 1:10 AMblepharophimosis Subject: blepharophimosis Ethans photosHi there to you all.. I have posted Ethans photos in the album.. Thank you all for your replies.. Take Care.. From Ethans Mum... Leah Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2004 Report Share Posted May 7, 2004 Ethans eye specialist here in Hastings, NZ is Dr Jane Houliston, She is brilliant. She put synthetic suspensions from his eyelid to just above the eyebrow.. At first the eyes were so open it was pretty scary but a few weeks after the surgery, the swelling and bruising had gone and they looked 'normal' if that is the right word. He also had to have drops in his eyes every day because he couldnt blink theye eys were not getting any moisture and they were drying out.. it was also coming into summer so the sun was probably affecting them too. She recommended some sunglasses but Ethan wouldnt weat them.. despite bribary and growls etc.. so we gave up and just used the drops. He has vision tests every 3 months and so far is doing well and has no need for glasses. Yippee! He has low muscle tone which affects his balance and fine motor skills, he also cant be toilet trained because of this. He also has very bad hand eye co-ordination and tends to relate to adults better than kids. Ethans father does not support me in any way with his condition and we split up two years ago which makes it hard battling along on my own. His mother is also very unsupportive to the point of being nasty about Ethan and even excluding him from things she does with the rest of our family. I am slowing learning to put my foot down with them but its like battling a lost cause .. does anybody else have jugmental people like this that they have to put up with because they are family? I have tried explaining about the syndrome so she will understand but it seems to fall on deaf ears. Its just plain that she doesnt like him.any suggestions would be really welcome. RE: blepharophimosis Ethans photos my goodness Leah your son Ethan has the biggest, most wonderful blue eyes, (I think they are blue) the doctors have done wonders, what is it they did exactly?? Tonikka -----Original Message-----From: sxyme32002 [mailto:leahs_male@...]Sent: May 6, 2004 1:10 AMblepharophimosis Subject: blepharophimosis Ethans photosHi there to you all.. I have posted Ethans photos in the album.. Thank you all for your replies.. Take Care.. From Ethans Mum... Leah Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2004 Report Share Posted May 7, 2004 IWOUDL TELL THEM TO GET LOST IF I WAS YOU~ ... YOUR BETTER THEN ARE AND THAT'S ALL THAT MATTERS TO YOU AND YOUR KIDS... YOUR LIL BOY IS CUTE ~ MY DAUGTHER JUST HAD HER 3RD SURGERY DONE 2 WEEKS AGO.. AN DTHERE DOING GRETA NO INFECTION THIS TIME AROUND THANK GOD... BUT KNO WI CAN SEE HER BIG BEAUTIFUL EYES~ .... KIT... DAWNleah <leahs_male@...> wrote: Ethans eye specialist here in Hastings, NZ is Dr Jane Houliston, She is brilliant. She put synthetic suspensions from his eyelid to just above the eyebrow.. At first the eyes were so open it was pretty scary but a few weeks after the surgery, the swelling and bruising had gone and they looked 'normal' if that is the right word. He also had to have drops in his eyes every day because he couldnt blink theye eys were not getting any moisture and they were drying out.. it was also coming into summer so the sun was probably affecting them too. She recommended some sunglasses but Ethan wouldnt weat them.. despite bribary and growls etc.. so we gave up and just used the drops. He has vision tests every 3 months and so far is doing well and has no need for glasses. Yippee! He has low muscle tone which affects his balance and fine motor skills, he also cant be toilet trained because of this. He also has very bad hand eye co-ordination and tends to relate to adults better than kids. Ethans father does not support me in any way with his condition and we split up two years ago which makes it hard battling along on my own. His mother is also very unsupportive to the point of being nasty about Ethan and even excluding him from things she does with the rest of our family. I am slowing learning to put my foot down with them but its like battling a lost cause .. does anybody else have jugmental people like this that they have to put up with because they are family? I have tried explaining about the syndrome so she will understand but it seems to fall on deaf ears. Its just plain that she doesnt like him.any suggestions would be really welcome. RE: blepharophimosis Ethans photos my goodness Leah your son Ethan has the biggest, most wonderful blue eyes, (I think they are blue) the doctors have done wonders, what is it they did exactly?? Tonikka -----Original Message-----From: sxyme32002 [mailto:leahs_male@...]Sent: May 6, 2004 1:10 AMblepharophimosis Subject: blepharophimosis Ethans photosHi there to you all.. I have posted Ethans photos in the album.. Thank you all for your replies.. Take Care.. From Ethans Mum... Leah Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2004 Report Share Posted May 7, 2004 hi Leah im just the person to ask about people not accepting my son for who he is. my sons grandmother (his dads mom) only just recently acknowledged that he was her grandchild, from the time he was born she blamed me for his "looks" says I must have drank or did drugs, funny thing is I never ever have touched the stuff. anyway from when Lynden was 5 months old till he was 2 she refused to see him, she said she could not handle having a "retarded" looking grandson (look at his pics, he looks far from retarded) anyway we decided that we would slowly reintroduce her back into my sons life, by this time we had a daughter too, well she ogled and oogled over hunter (my daughter) I told his dad he would have to start standing up for his son and for me ( she said many many nasty things) he refused said he could not turn his back on his "family" (obviously not me and his kids) so I gave him the ultimatum and he chose his "family" unfortunately it took our divorce for her to really get to know my son but you know what I am glad it all worked out this way because both his dad and I are in new relationships " im getting married in august"(never thought I would do that again) and he sees his dad every single weekend. so in the end it worked out, but I tell yah I am sure glad to know that my ex mother in law is not the only ignorant woman out there. hopefully your sons grandmother will realize what she is missing out on. my only suggestion to you would be tell her where to go ( if you can ) but really try not to let it get to you, I know that is probably the last thing you can do, but honestly it does get better, EVENTUALLY. Tonikka -----Original Message-----From: leah [mailto:leahs_male@...]Sent: May 6, 2004 10:11 PMblepharophimosis Subject: Re: blepharophimosis Ethans photos Ethans eye specialist here in Hastings, NZ is Dr Jane Houliston, She is brilliant. She put synthetic suspensions from his eyelid to just above the eyebrow.. At first the eyes were so open it was pretty scary but a few weeks after the surgery, the swelling and bruising had gone and they looked 'normal' if that is the right word. He also had to have drops in his eyes every day because he couldnt blink theye eys were not getting any moisture and they were drying out.. it was also coming into summer so the sun was probably affecting them too. She recommended some sunglasses but Ethan wouldnt weat them.. despite bribary and growls etc.. so we gave up and just used the drops. He has vision tests every 3 months and so far is doing well and has no need for glasses. Yippee! He has low muscle tone which affects his balance and fine motor skills, he also cant be toilet trained because of this. He also has very bad hand eye co-ordination and tends to relate to adults better than kids. Ethans father does not support me in any way with his condition and we split up two years ago which makes it hard battling along on my own. His mother is also very unsupportive to the point of being nasty about Ethan and even excluding him from things she does with the rest of our family. I am slowing learning to put my foot down with them but its like battling a lost cause .. does anybody else have jugmental people like this that they have to put up with because they are family? I have tried explaining about the syndrome so she will understand but it seems to fall on deaf ears. Its just plain that she doesnt like him.any suggestions would be really welcome. RE: blepharophimosis Ethans photos my goodness Leah your son Ethan has the biggest, most wonderful blue eyes, (I think they are blue) the doctors have done wonders, what is it they did exactly?? Tonikka -----Original Message-----From: sxyme32002 [mailto:leahs_male@...]Sent: May 6, 2004 1:10 AMblepharophimosis Subject: blepharophimosis Ethans photosHi there to you all.. I have posted Ethans photos in the album.. Thank you all for your replies.. Take Care.. From Ethans Mum... Leah Quote Link to comment Share on other sites More sharing options...
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