Guest guest Posted May 6, 2006 Report Share Posted May 6, 2006 david will be in our prayers cathie & Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2006 Report Share Posted May 6, 2006 david will be in our prayers cathie & Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2006 Report Share Posted May 6, 2006 david will be in our prayers cathie & Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2006 Report Share Posted May 6, 2006 , we'll be thinking of you on Tuesday. Please give an update when you can. > > Hi again- > > I just want to let our CHaRGE family know that our 9 mo baby has > surgery scheduled for Tuesday at 12:00. His opthamolic plastic surgeon > will > be looking at his tear duct. He has pretty extensive coloboma in both > eyes > and micropthmalia in one of them (small eye) and he wears a prosthetic > shell > in the small eye. Since birth his tear duct has not been functioning > properly and it is causing chrinic conjunctivitus (pink eye). The > infection > is getting to the point where the occularist is reccomending that we leave > the shell out every so often to clear the infection. The problem is that > although the prosthetic shell makes his eye look normal it is more > > > > Weir > kawfolks@... > Web Site: http://ca.geocities.com/weirfamilyrogers Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2006 Report Share Posted May 6, 2006 , we'll be thinking of you on Tuesday. Please give an update when you can. > > Hi again- > > I just want to let our CHaRGE family know that our 9 mo baby has > surgery scheduled for Tuesday at 12:00. His opthamolic plastic surgeon > will > be looking at his tear duct. He has pretty extensive coloboma in both > eyes > and micropthmalia in one of them (small eye) and he wears a prosthetic > shell > in the small eye. Since birth his tear duct has not been functioning > properly and it is causing chrinic conjunctivitus (pink eye). The > infection > is getting to the point where the occularist is reccomending that we leave > the shell out every so often to clear the infection. The problem is that > although the prosthetic shell makes his eye look normal it is more > > > > Weir > kawfolks@... > Web Site: http://ca.geocities.com/weirfamilyrogers Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2006 Report Share Posted May 6, 2006 will be in my thoughts and prayers as well. Sefcik wrote: Hi again- I just want to let our CHaRGE family know that our 9 mo baby has surgery scheduled for Tuesday at 12:00. His opthamolic plastic surgeon will be looking at his tear duct. He has pretty extensive coloboma in both eyes and micropthmalia in one of them (small eye) and he wears a prosthetic shell in the small eye. Since birth his tear duct has not been functioning properly and it is causing chrinic conjunctivitus (pink eye). The infection is getting to the point where the occularist is reccomending that we leave the shell out every so often to clear the infection. The problem is that although the prosthetic shell makes his eye look normal it is more functional than that, the purpose of the shell is to enlarge the eye socket to make his face symmetrical. The eyeball in that eye is so small he can't open the eye without the shell. So every thirty days we have the shell enlarged so that the face will continue to grow. Therefore, leaving the eye out for more than 3 days at a time is not an option to avoid further surgeries down the road. We were initially going to wait and coordinate the surgery with his palette surgery in September but the infection is getting worse. When he goes to surgery they will first see if the reason the tear duct is not working properly is because it is blocked, this is the best case scenerio, they will try to irrigate it by flushing it and if it is blocked this will inclog it and that would be great. The secon case scenerio would be that it is colapsed, this could be possible since he has cleft lip and palette and micro eye, if this is the case they would put a small stint in the tear duct to homd it open for 6 months and remove it in 6 mos. The final scenerio is if the tear duct didn't form properly if this is the case they will need to schedule a surgery for when he gets older to manufacture a tear duct by drilling a small holle in the nose to make the tear duct. I think the thing that I am most scared about is sedating poor . Please keep him in your prayers. The following Tuesday he is being sedated AGAIN to perform an MRI and ABR (they wont combine the two). I chose to do the sedations back to back because he regresses every time he is sedated so I thought if I put him under 5 days apart it would be enough time to recover from the anesthesia, but only have to relearn everything once. I hope we are making the right decision with that one. Please keep us in your prayers! Thanks mom to Beautiful baby (9mos. CHaRGER) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2006 Report Share Posted May 6, 2006 will be in my thoughts and prayers as well. Sefcik wrote: Hi again- I just want to let our CHaRGE family know that our 9 mo baby has surgery scheduled for Tuesday at 12:00. His opthamolic plastic surgeon will be looking at his tear duct. He has pretty extensive coloboma in both eyes and micropthmalia in one of them (small eye) and he wears a prosthetic shell in the small eye. Since birth his tear duct has not been functioning properly and it is causing chrinic conjunctivitus (pink eye). The infection is getting to the point where the occularist is reccomending that we leave the shell out every so often to clear the infection. The problem is that although the prosthetic shell makes his eye look normal it is more functional than that, the purpose of the shell is to enlarge the eye socket to make his face symmetrical. The eyeball in that eye is so small he can't open the eye without the shell. So every thirty days we have the shell enlarged so that the face will continue to grow. Therefore, leaving the eye out for more than 3 days at a time is not an option to avoid further surgeries down the road. We were initially going to wait and coordinate the surgery with his palette surgery in September but the infection is getting worse. When he goes to surgery they will first see if the reason the tear duct is not working properly is because it is blocked, this is the best case scenerio, they will try to irrigate it by flushing it and if it is blocked this will inclog it and that would be great. The secon case scenerio would be that it is colapsed, this could be possible since he has cleft lip and palette and micro eye, if this is the case they would put a small stint in the tear duct to homd it open for 6 months and remove it in 6 mos. The final scenerio is if the tear duct didn't form properly if this is the case they will need to schedule a surgery for when he gets older to manufacture a tear duct by drilling a small holle in the nose to make the tear duct. I think the thing that I am most scared about is sedating poor . Please keep him in your prayers. The following Tuesday he is being sedated AGAIN to perform an MRI and ABR (they wont combine the two). I chose to do the sedations back to back because he regresses every time he is sedated so I thought if I put him under 5 days apart it would be enough time to recover from the anesthesia, but only have to relearn everything once. I hope we are making the right decision with that one. Please keep us in your prayers! Thanks mom to Beautiful baby (9mos. CHaRGER) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2006 Report Share Posted May 6, 2006 will be in my thoughts and prayers as well. Sefcik wrote: Hi again- I just want to let our CHaRGE family know that our 9 mo baby has surgery scheduled for Tuesday at 12:00. His opthamolic plastic surgeon will be looking at his tear duct. He has pretty extensive coloboma in both eyes and micropthmalia in one of them (small eye) and he wears a prosthetic shell in the small eye. Since birth his tear duct has not been functioning properly and it is causing chrinic conjunctivitus (pink eye). The infection is getting to the point where the occularist is reccomending that we leave the shell out every so often to clear the infection. The problem is that although the prosthetic shell makes his eye look normal it is more functional than that, the purpose of the shell is to enlarge the eye socket to make his face symmetrical. The eyeball in that eye is so small he can't open the eye without the shell. So every thirty days we have the shell enlarged so that the face will continue to grow. Therefore, leaving the eye out for more than 3 days at a time is not an option to avoid further surgeries down the road. We were initially going to wait and coordinate the surgery with his palette surgery in September but the infection is getting worse. When he goes to surgery they will first see if the reason the tear duct is not working properly is because it is blocked, this is the best case scenerio, they will try to irrigate it by flushing it and if it is blocked this will inclog it and that would be great. The secon case scenerio would be that it is colapsed, this could be possible since he has cleft lip and palette and micro eye, if this is the case they would put a small stint in the tear duct to homd it open for 6 months and remove it in 6 mos. The final scenerio is if the tear duct didn't form properly if this is the case they will need to schedule a surgery for when he gets older to manufacture a tear duct by drilling a small holle in the nose to make the tear duct. I think the thing that I am most scared about is sedating poor . Please keep him in your prayers. The following Tuesday he is being sedated AGAIN to perform an MRI and ABR (they wont combine the two). I chose to do the sedations back to back because he regresses every time he is sedated so I thought if I put him under 5 days apart it would be enough time to recover from the anesthesia, but only have to relearn everything once. I hope we are making the right decision with that one. Please keep us in your prayers! Thanks mom to Beautiful baby (9mos. CHaRGER) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2006 Report Share Posted May 6, 2006 Many, many prayers going out to you. Sedation is a scary thing. We just had Meggy sedated yesterday. After a year and a half of doing this (this was her 18th time), it still makes me cry. Mommy still worries like it is the first. I hope that the tear duct is just blocked, and that you can move forward quickly with the other procedures. Prayers also going out to you. Although we mommies aren't physically going through the procedures, we are emotionally hand in hand with our child. I pray for your strength. , mommy to Meagan (CHaRgE) and 18 months, and big brother 3 3/4 years, married to the best daddy in the world for 9 years -- Eye Surgery Hi again- I just want to let our CHaRGE family know that our 9 mo baby has surgery scheduled for Tuesday at 12:00. His opthamolic plastic surgeon will be looking at his tear duct. He has pretty extensive coloboma in both eyes and micropthmalia in one of them (small eye) and he wears a prosthetic shell in the small eye. Since birth his tear duct has not been functioning properly and it is causing chrinic conjunctivitus (pink eye). The infection is getting to the point where the occularist is reccomending that we leave the shell out every so often to clear the infection. The problem is that although the prosthetic shell makes his eye look normal it is more functional than that, the purpose of the shell is to enlarge the eye socket to make his face symmetrical. The eyeball in that eye is so small he can't open the eye without the shell. So every thirty days we have the shell enlarged so that the face will continue to grow. Therefore, leaving the eye out for more than 3 days at a time is not an option to avoid further surgeries down the road. We were initially going to wait and coordinate the surgery with his palette surgery in September but the infection is getting worse. When he goes to surgery they will first see if the reason the tear duct is not working properly is because it is blocked, this is the best case scenerio, they will try to irrigate it by flushing it and if it is blocked this will inclog it and that would be great. The secon case scenerio would be that it is colapsed, this could be possible since he has cleft lip and palette and micro eye, if this is the case they would put a small stint in the tear duct to homd it open for 6 months and remove it in 6 mos. The final scenerio is if the tear duct didn't form properly if this is the case they will need to schedule a surgery for when he gets older to manufacture a tear duct by drilling a small holle in the nose to make the tear duct. I think the thing that I am most scared about is sedating poor . Please keep him in your prayers. The following Tuesday he is being sedated AGAIN to perform an MRI and ABR (they wont combine the two). I chose to do the sedations back to back because he regresses every time he is sedated so I thought if I put him under 5 days apart it would be enough time to recover from the anesthesia, but only have to relearn everything once. I hope we are making the right decision with that one. Please keep us in your prayers! Thanks mom to Beautiful baby (9mos. CHaRGER) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2006 Report Share Posted May 7, 2006 - I hope the eye surgery goes well and that everything happens as a " best case scenario " . Aubrie had several tear duct probes and finally stents because her ducts would block. It didn't cause major problems for her -- no infections -- just gunk and tearing. Michele W mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2006 Report Share Posted May 7, 2006 - I hope the eye surgery goes well and that everything happens as a " best case scenario " . Aubrie had several tear duct probes and finally stents because her ducts would block. It didn't cause major problems for her -- no infections -- just gunk and tearing. Michele W mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2006 Report Share Posted May 7, 2006 - I hope the eye surgery goes well and that everything happens as a " best case scenario " . Aubrie had several tear duct probes and finally stents because her ducts would block. It didn't cause major problems for her -- no infections -- just gunk and tearing. Michele W mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2006 Report Share Posted May 7, 2006 good luck > > - > I hope the eye surgery goes well and that everything happens as a " best > case > scenario " . Aubrie had several tear duct probes and finally stents because > her ducts would block. It didn't cause major problems for her -- no > infections -- just gunk and tearing. > > Michele W > mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > http://www.imagestation.com/album/?id=2117043995 > > Membership of this email support group does not constitute membership in > the CHARGE Syndrome Foundation; for information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org > > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2006 Report Share Posted May 7, 2006 good luck > > - > I hope the eye surgery goes well and that everything happens as a " best > case > scenario " . Aubrie had several tear duct probes and finally stents because > her ducts would block. It didn't cause major problems for her -- no > infections -- just gunk and tearing. > > Michele W > mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > http://www.imagestation.com/album/?id=2117043995 > > Membership of this email support group does not constitute membership in > the CHARGE Syndrome Foundation; for information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org > > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2006 Report Share Posted May 7, 2006 good luck > > - > I hope the eye surgery goes well and that everything happens as a " best > case > scenario " . Aubrie had several tear duct probes and finally stents because > her ducts would block. It didn't cause major problems for her -- no > infections -- just gunk and tearing. > > Michele W > mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > http://www.imagestation.com/album/?id=2117043995 > > Membership of this email support group does not constitute membership in > the CHARGE Syndrome Foundation; for information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org > > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2006 Report Share Posted May 12, 2006 Well, bad news is that doesn't have a tear duct in his micropthmalia eye. Because there is nothing at all there that they can work with they will need to make a tear duct system from scratch (you like how technical I am). Basically they need to wait until he gets older, like 11 years old. Because is only 9 months old now, we have a while to wait. In the meantime, he believes that the mucous that is never ending coming from that eye is becuase it is so small that there is a lot of space for it to accumlate. We will check in with the dr. every 3 months to make sure that it is not infected. I will be really good at cleaning out his eye by the time he is 11 needless to say. Another thing that we will start doing is, my husband is going to learn how to take his prosthetic shell in and out. My husband and I have tried this in the past and been unsuccessful so we just have the dr. do it every month for a cleaning, but it needs to be done more regular than that so my husband is going to try and try until he has it down. The greatest news from all of this though is that handled the anesthesia like a dream, he was literally smiling in the recovery room. I told the surgeon that I don't think he did anything but tickle him while we were in the waiting room because he certainly didn't act like a baby that had been put to sleep and have the surgeon cutting where his tear duct should be. I was so stressed out about the anesthisia before hand. My oldest son said " mom do you have alzeimers or somthing? " I asked why and he said " because you asked me how my day at school was like 5 times " . Embarrasingly enough I also forgot to pick him up from baseball until he called saying " practice is over, Where are you? " AND after I picked my 10 year old from practice my husband was home with the baby and my 10 year old and I went to the pharmacy, when I got in the store I realized I had my purse, my sunglasses and a baby blanket in my hand in the store. What in the world did I carry that in with me for. The baby wasn't even with me. Guess I was I was a bit distracted!!! is going to be put to sleep again on Tuesday for MRI & ABR but I feel pretty comfortable with it this time around. Thanks for all of your support and prayers. mom to 3D's in Dallas ( 10, Dylan 3, and 9 mos. CHaRGEr) > > good luck > > > > > > - > > I hope the eye surgery goes well and that everything happens as a " best > > case > > scenario " . Aubrie had several tear duct probes and finally stents > because > > her ducts would block. It didn't cause major problems for her -- no > > infections -- just gunk and tearing. > > > > Michele W > > mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ > > > > > > > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > > http://www.imagestation.com/album/?id=2117043995 > > > > Membership of this email support group does not constitute membership in > > the CHARGE Syndrome Foundation; for information about the CHARGE > Syndrome > > Foundation or to become a member (and get the newsletter), > > please contact marion@... or visit > > the web site at http://www.chargesyndrome.org > > > > 8th International > > CHARGE Syndrome Conference, July, 2007. Information will be available at > > www.chargesyndrome.org or by calling 1-. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2006 Report Share Posted May 12, 2006 Well, bad news is that doesn't have a tear duct in his micropthmalia eye. Because there is nothing at all there that they can work with they will need to make a tear duct system from scratch (you like how technical I am). Basically they need to wait until he gets older, like 11 years old. Because is only 9 months old now, we have a while to wait. In the meantime, he believes that the mucous that is never ending coming from that eye is becuase it is so small that there is a lot of space for it to accumlate. We will check in with the dr. every 3 months to make sure that it is not infected. I will be really good at cleaning out his eye by the time he is 11 needless to say. Another thing that we will start doing is, my husband is going to learn how to take his prosthetic shell in and out. My husband and I have tried this in the past and been unsuccessful so we just have the dr. do it every month for a cleaning, but it needs to be done more regular than that so my husband is going to try and try until he has it down. The greatest news from all of this though is that handled the anesthesia like a dream, he was literally smiling in the recovery room. I told the surgeon that I don't think he did anything but tickle him while we were in the waiting room because he certainly didn't act like a baby that had been put to sleep and have the surgeon cutting where his tear duct should be. I was so stressed out about the anesthisia before hand. My oldest son said " mom do you have alzeimers or somthing? " I asked why and he said " because you asked me how my day at school was like 5 times " . Embarrasingly enough I also forgot to pick him up from baseball until he called saying " practice is over, Where are you? " AND after I picked my 10 year old from practice my husband was home with the baby and my 10 year old and I went to the pharmacy, when I got in the store I realized I had my purse, my sunglasses and a baby blanket in my hand in the store. What in the world did I carry that in with me for. The baby wasn't even with me. Guess I was I was a bit distracted!!! is going to be put to sleep again on Tuesday for MRI & ABR but I feel pretty comfortable with it this time around. Thanks for all of your support and prayers. mom to 3D's in Dallas ( 10, Dylan 3, and 9 mos. CHaRGEr) > > good luck > > > > > > - > > I hope the eye surgery goes well and that everything happens as a " best > > case > > scenario " . Aubrie had several tear duct probes and finally stents > because > > her ducts would block. It didn't cause major problems for her -- no > > infections -- just gunk and tearing. > > > > Michele W > > mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ > > > > > > > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > > http://www.imagestation.com/album/?id=2117043995 > > > > Membership of this email support group does not constitute membership in > > the CHARGE Syndrome Foundation; for information about the CHARGE > Syndrome > > Foundation or to become a member (and get the newsletter), > > please contact marion@... or visit > > the web site at http://www.chargesyndrome.org > > > > 8th International > > CHARGE Syndrome Conference, July, 2007. Information will be available at > > www.chargesyndrome.org or by calling 1-. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2006 Report Share Posted May 12, 2006 Well, bad news is that doesn't have a tear duct in his micropthmalia eye. Because there is nothing at all there that they can work with they will need to make a tear duct system from scratch (you like how technical I am). Basically they need to wait until he gets older, like 11 years old. Because is only 9 months old now, we have a while to wait. In the meantime, he believes that the mucous that is never ending coming from that eye is becuase it is so small that there is a lot of space for it to accumlate. We will check in with the dr. every 3 months to make sure that it is not infected. I will be really good at cleaning out his eye by the time he is 11 needless to say. Another thing that we will start doing is, my husband is going to learn how to take his prosthetic shell in and out. My husband and I have tried this in the past and been unsuccessful so we just have the dr. do it every month for a cleaning, but it needs to be done more regular than that so my husband is going to try and try until he has it down. The greatest news from all of this though is that handled the anesthesia like a dream, he was literally smiling in the recovery room. I told the surgeon that I don't think he did anything but tickle him while we were in the waiting room because he certainly didn't act like a baby that had been put to sleep and have the surgeon cutting where his tear duct should be. I was so stressed out about the anesthisia before hand. My oldest son said " mom do you have alzeimers or somthing? " I asked why and he said " because you asked me how my day at school was like 5 times " . Embarrasingly enough I also forgot to pick him up from baseball until he called saying " practice is over, Where are you? " AND after I picked my 10 year old from practice my husband was home with the baby and my 10 year old and I went to the pharmacy, when I got in the store I realized I had my purse, my sunglasses and a baby blanket in my hand in the store. What in the world did I carry that in with me for. The baby wasn't even with me. Guess I was I was a bit distracted!!! is going to be put to sleep again on Tuesday for MRI & ABR but I feel pretty comfortable with it this time around. Thanks for all of your support and prayers. mom to 3D's in Dallas ( 10, Dylan 3, and 9 mos. CHaRGEr) > > good luck > > > > > > - > > I hope the eye surgery goes well and that everything happens as a " best > > case > > scenario " . Aubrie had several tear duct probes and finally stents > because > > her ducts would block. It didn't cause major problems for her -- no > > infections -- just gunk and tearing. > > > > Michele W > > mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ > > > > > > > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > > http://www.imagestation.com/album/?id=2117043995 > > > > Membership of this email support group does not constitute membership in > > the CHARGE Syndrome Foundation; for information about the CHARGE > Syndrome > > Foundation or to become a member (and get the newsletter), > > please contact marion@... or visit > > the web site at http://www.chargesyndrome.org > > > > 8th International > > CHARGE Syndrome Conference, July, 2007. Information will be available at > > www.chargesyndrome.org or by calling 1-. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2006 Report Share Posted May 12, 2006 - I'm sorry that you got bad news, but I'm glad you found relief in the way managed the anesthesia. Aubrie has never had a problem either (knock-on-wood). It's always a worry, but at least for us it's one of those worries that can remain a shadow in the background. Aren't you thankful for your other kids? I found that my older son has kept me grounded in real life. Now that the most recent crisis is over, I hope you find your sanity returning. I am so stressed too that I've been finding myself wandering into a room and forgetting why, etc. I know we all do those things sometimes, but it's been really hard to stay focused today! Oh -- and I'll be hoping that your husband gets the eye care under control. Some things are just harder than others to get a handle on, aren't they? Getting that done with a squirmy 9-month-old does not sound like a fun job! Michele W mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2006 Report Share Posted May 12, 2006 - I'm sorry that you got bad news, but I'm glad you found relief in the way managed the anesthesia. Aubrie has never had a problem either (knock-on-wood). It's always a worry, but at least for us it's one of those worries that can remain a shadow in the background. Aren't you thankful for your other kids? I found that my older son has kept me grounded in real life. Now that the most recent crisis is over, I hope you find your sanity returning. I am so stressed too that I've been finding myself wandering into a room and forgetting why, etc. I know we all do those things sometimes, but it's been really hard to stay focused today! Oh -- and I'll be hoping that your husband gets the eye care under control. Some things are just harder than others to get a handle on, aren't they? Getting that done with a squirmy 9-month-old does not sound like a fun job! Michele W mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2006 Report Share Posted May 12, 2006 keep trying with the eye--tim got his about 6 mos. we used to wrap him papoose style and basically lay or sit across him to get in and out. since he has gotten bigger 2 or 3 it is simp;e and we could do it in our sleep. we are waiting for the day he can do it himself. maria Re: Eye Surgery Well, bad news is that doesn't have a tear duct in his micropthmalia eye. Because there is nothing at all there that they can work with they will need to make a tear duct system from scratch (you like how technical I am). Basically they need to wait until he gets older, like 11 years old. Because is only 9 months old now, we have a while to wait. In the meantime, he believes that the mucous that is never ending coming from that eye is becuase it is so small that there is a lot of space for it to accumlate. We will check in with the dr. every 3 months to make sure that it is not infected. I will be really good at cleaning out his eye by the time he is 11 needless to say. Another thing that we will start doing is, my husband is going to learn how to take his prosthetic shell in and out. My husband and I have tried this in the past and been unsuccessful so we just have the dr. do it every month for a cleaning, but it needs to be done more regular than that so my husband is going to try and try until he has it down. The greatest news from all of this though is that handled the anesthesia like a dream, he was literally smiling in the recovery room. I told the surgeon that I don't think he did anything but tickle him while we were in the waiting room because he certainly didn't act like a baby that had been put to sleep and have the surgeon cutting where his tear duct should be. I was so stressed out about the anesthisia before hand. My oldest son said " mom do you have alzeimers or somthing? " I asked why and he said " because you asked me how my day at school was like 5 times " . Embarrasingly enough I also forgot to pick him up from baseball until he called saying " practice is over, Where are you? " AND after I picked my 10 year old from practice my husband was home with the baby and my 10 year old and I went to the pharmacy, when I got in the store I realized I had my purse, my sunglasses and a baby blanket in my hand in the store. What in the world did I carry that in with me for. The baby wasn't even with me. Guess I was I was a bit distracted!!! is going to be put to sleep again on Tuesday for MRI & ABR but I feel pretty comfortable with it this time around. Thanks for all of your support and prayers. mom to 3D's in Dallas ( 10, Dylan 3, and 9 mos. CHaRGEr) > > good luck > > > > > > - > > I hope the eye surgery goes well and that everything happens as a " best > > case > > scenario " . Aubrie had several tear duct probes and finally stents > because > > her ducts would block. It didn't cause major problems for her -- no > > infections -- just gunk and tearing. > > > > Michele W > > mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ > > > > > > > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > > http://www.imagestation.com/album/?id=2117043995 > > > > Membership of this email support group does not constitute membership in > > the CHARGE Syndrome Foundation; for information about the CHARGE > Syndrome > > Foundation or to become a member (and get the newsletter), > > please contact marion@... or visit > > the web site at http://www.chargesyndrome.org > > > > 8th International > > CHARGE Syndrome Conference, July, 2007. Information will be available at > > www.chargesyndrome.org or by calling 1-. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2006 Report Share Posted May 12, 2006 keep trying with the eye--tim got his about 6 mos. we used to wrap him papoose style and basically lay or sit across him to get in and out. since he has gotten bigger 2 or 3 it is simp;e and we could do it in our sleep. we are waiting for the day he can do it himself. maria Re: Eye Surgery Well, bad news is that doesn't have a tear duct in his micropthmalia eye. Because there is nothing at all there that they can work with they will need to make a tear duct system from scratch (you like how technical I am). Basically they need to wait until he gets older, like 11 years old. Because is only 9 months old now, we have a while to wait. In the meantime, he believes that the mucous that is never ending coming from that eye is becuase it is so small that there is a lot of space for it to accumlate. We will check in with the dr. every 3 months to make sure that it is not infected. I will be really good at cleaning out his eye by the time he is 11 needless to say. Another thing that we will start doing is, my husband is going to learn how to take his prosthetic shell in and out. My husband and I have tried this in the past and been unsuccessful so we just have the dr. do it every month for a cleaning, but it needs to be done more regular than that so my husband is going to try and try until he has it down. The greatest news from all of this though is that handled the anesthesia like a dream, he was literally smiling in the recovery room. I told the surgeon that I don't think he did anything but tickle him while we were in the waiting room because he certainly didn't act like a baby that had been put to sleep and have the surgeon cutting where his tear duct should be. I was so stressed out about the anesthisia before hand. My oldest son said " mom do you have alzeimers or somthing? " I asked why and he said " because you asked me how my day at school was like 5 times " . Embarrasingly enough I also forgot to pick him up from baseball until he called saying " practice is over, Where are you? " AND after I picked my 10 year old from practice my husband was home with the baby and my 10 year old and I went to the pharmacy, when I got in the store I realized I had my purse, my sunglasses and a baby blanket in my hand in the store. What in the world did I carry that in with me for. The baby wasn't even with me. Guess I was I was a bit distracted!!! is going to be put to sleep again on Tuesday for MRI & ABR but I feel pretty comfortable with it this time around. Thanks for all of your support and prayers. mom to 3D's in Dallas ( 10, Dylan 3, and 9 mos. CHaRGEr) > > good luck > > > > > > - > > I hope the eye surgery goes well and that everything happens as a " best > > case > > scenario " . Aubrie had several tear duct probes and finally stents > because > > her ducts would block. It didn't cause major problems for her -- no > > infections -- just gunk and tearing. > > > > Michele W > > mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ > > > > > > > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > > http://www.imagestation.com/album/?id=2117043995 > > > > Membership of this email support group does not constitute membership in > > the CHARGE Syndrome Foundation; for information about the CHARGE > Syndrome > > Foundation or to become a member (and get the newsletter), > > please contact marion@... or visit > > the web site at http://www.chargesyndrome.org > > > > 8th International > > CHARGE Syndrome Conference, July, 2007. Information will be available at > > www.chargesyndrome.org or by calling 1-. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2006 Report Share Posted May 13, 2006 if u have dementia so does my mummy > > keep trying with the eye--tim got his about 6 mos. we used to wrap him > papoose style and basically lay or sit across him to get in and out. since > he has gotten bigger 2 or 3 it is simp;e and we could do it in our > sleep. we are waiting for the day he can do it himself. > > maria > Re: Eye Surgery > > > Well, bad news is that doesn't have a tear duct in his micropthmalia > eye. Because there is nothing at all there that they can work with they > will need to make a tear duct system from scratch (you like how technical > I > am). Basically they need to wait until he gets older, like 11 years old. > Because is only 9 months old now, we have a while to wait. In the > meantime, he believes that the mucous that is never ending coming from > that > eye is becuase it is so small that there is a lot of space for it to > accumlate. We will check in with the dr. every 3 months to make sure that > it is not infected. I will be really good at cleaning out his eye by the > time he is 11 needless to say. Another thing that we will start doing is, > my husband is going to learn how to take his prosthetic shell in and out. > My > husband and I have tried this in the past and been unsuccessful so we just > have the dr. do it every month for a cleaning, but it needs to be done > more > regular than that so my husband is going to try and try until he has it > down. > The greatest news from all of this though is that handled the > anesthesia like a dream, he was literally smiling in the recovery room. I > told the surgeon that I don't think he did anything but tickle him while > we > were in the waiting room because he certainly didn't act like a baby that > had been put to sleep and have the surgeon cutting where his tear duct > should be. I was so stressed out about the anesthisia before hand. My > oldest son said " mom do you have alzeimers or somthing? " I asked why and > he > said " because you asked me how my day at school was like 5 times " . > Embarrasingly enough I also forgot to pick him up from baseball until he > called saying " practice is over, Where are you? " AND after I picked my 10 > year old from practice my husband was home with the baby and my 10 year > old > and I went to the pharmacy, when I got in the store I realized I had > my purse, my sunglasses and a baby blanket in my hand in the store. What > in > the world did I carry that in with me for. The baby wasn't even with > me. Guess I was I was a bit distracted!!! > is going to be put to sleep again on Tuesday for MRI & ABR but I > feel > pretty comfortable with it this time around. > Thanks for all of your support and prayers. > mom to 3D's in Dallas ( 10, Dylan 3, and 9 mos. > CHaRGEr) > > > > > > > good luck > > > > > > > > > > - > > > I hope the eye surgery goes well and that everything happens as a > " best > > > case > > > scenario " . Aubrie had several tear duct probes and finally stents > > because > > > her ducts would block. It didn't cause major problems for her -- no > > > infections -- just gunk and tearing. > > > > > > Michele W > > > mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ > > > > > > > > > > > > > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > > > http://www.imagestation.com/album/?id=2117043995 > > > > > > Membership of this email support group does not constitute membership > in > > > the CHARGE Syndrome Foundation; for information about the CHARGE > > Syndrome > > > Foundation or to become a member (and get the newsletter), > > > please contact marion@... or visit > > > the web site at http://www.chargesyndrome.org > > > > > > 8th International > > > CHARGE Syndrome Conference, July, 2007. Information will be available > at > > > www.chargesyndrome.org or by calling 1-. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2006 Report Share Posted May 13, 2006 if u have dementia so does my mummy > > keep trying with the eye--tim got his about 6 mos. we used to wrap him > papoose style and basically lay or sit across him to get in and out. since > he has gotten bigger 2 or 3 it is simp;e and we could do it in our > sleep. we are waiting for the day he can do it himself. > > maria > Re: Eye Surgery > > > Well, bad news is that doesn't have a tear duct in his micropthmalia > eye. Because there is nothing at all there that they can work with they > will need to make a tear duct system from scratch (you like how technical > I > am). Basically they need to wait until he gets older, like 11 years old. > Because is only 9 months old now, we have a while to wait. In the > meantime, he believes that the mucous that is never ending coming from > that > eye is becuase it is so small that there is a lot of space for it to > accumlate. We will check in with the dr. every 3 months to make sure that > it is not infected. I will be really good at cleaning out his eye by the > time he is 11 needless to say. Another thing that we will start doing is, > my husband is going to learn how to take his prosthetic shell in and out. > My > husband and I have tried this in the past and been unsuccessful so we just > have the dr. do it every month for a cleaning, but it needs to be done > more > regular than that so my husband is going to try and try until he has it > down. > The greatest news from all of this though is that handled the > anesthesia like a dream, he was literally smiling in the recovery room. I > told the surgeon that I don't think he did anything but tickle him while > we > were in the waiting room because he certainly didn't act like a baby that > had been put to sleep and have the surgeon cutting where his tear duct > should be. I was so stressed out about the anesthisia before hand. My > oldest son said " mom do you have alzeimers or somthing? " I asked why and > he > said " because you asked me how my day at school was like 5 times " . > Embarrasingly enough I also forgot to pick him up from baseball until he > called saying " practice is over, Where are you? " AND after I picked my 10 > year old from practice my husband was home with the baby and my 10 year > old > and I went to the pharmacy, when I got in the store I realized I had > my purse, my sunglasses and a baby blanket in my hand in the store. What > in > the world did I carry that in with me for. The baby wasn't even with > me. Guess I was I was a bit distracted!!! > is going to be put to sleep again on Tuesday for MRI & ABR but I > feel > pretty comfortable with it this time around. > Thanks for all of your support and prayers. > mom to 3D's in Dallas ( 10, Dylan 3, and 9 mos. > CHaRGEr) > > > > > > > good luck > > > > > > > > > > - > > > I hope the eye surgery goes well and that everything happens as a > " best > > > case > > > scenario " . Aubrie had several tear duct probes and finally stents > > because > > > her ducts would block. It didn't cause major problems for her -- no > > > infections -- just gunk and tearing. > > > > > > Michele W > > > mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ > > > > > > > > > > > > > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > > > http://www.imagestation.com/album/?id=2117043995 > > > > > > Membership of this email support group does not constitute membership > in > > > the CHARGE Syndrome Foundation; for information about the CHARGE > > Syndrome > > > Foundation or to become a member (and get the newsletter), > > > please contact marion@... or visit > > > the web site at http://www.chargesyndrome.org > > > > > > 8th International > > > CHARGE Syndrome Conference, July, 2007. Information will be available > at > > > www.chargesyndrome.org or by calling 1-. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2006 Report Share Posted May 13, 2006 if u have dementia so does my mummy > > keep trying with the eye--tim got his about 6 mos. we used to wrap him > papoose style and basically lay or sit across him to get in and out. since > he has gotten bigger 2 or 3 it is simp;e and we could do it in our > sleep. we are waiting for the day he can do it himself. > > maria > Re: Eye Surgery > > > Well, bad news is that doesn't have a tear duct in his micropthmalia > eye. Because there is nothing at all there that they can work with they > will need to make a tear duct system from scratch (you like how technical > I > am). Basically they need to wait until he gets older, like 11 years old. > Because is only 9 months old now, we have a while to wait. In the > meantime, he believes that the mucous that is never ending coming from > that > eye is becuase it is so small that there is a lot of space for it to > accumlate. We will check in with the dr. every 3 months to make sure that > it is not infected. I will be really good at cleaning out his eye by the > time he is 11 needless to say. Another thing that we will start doing is, > my husband is going to learn how to take his prosthetic shell in and out. > My > husband and I have tried this in the past and been unsuccessful so we just > have the dr. do it every month for a cleaning, but it needs to be done > more > regular than that so my husband is going to try and try until he has it > down. > The greatest news from all of this though is that handled the > anesthesia like a dream, he was literally smiling in the recovery room. I > told the surgeon that I don't think he did anything but tickle him while > we > were in the waiting room because he certainly didn't act like a baby that > had been put to sleep and have the surgeon cutting where his tear duct > should be. I was so stressed out about the anesthisia before hand. My > oldest son said " mom do you have alzeimers or somthing? " I asked why and > he > said " because you asked me how my day at school was like 5 times " . > Embarrasingly enough I also forgot to pick him up from baseball until he > called saying " practice is over, Where are you? " AND after I picked my 10 > year old from practice my husband was home with the baby and my 10 year > old > and I went to the pharmacy, when I got in the store I realized I had > my purse, my sunglasses and a baby blanket in my hand in the store. What > in > the world did I carry that in with me for. The baby wasn't even with > me. Guess I was I was a bit distracted!!! > is going to be put to sleep again on Tuesday for MRI & ABR but I > feel > pretty comfortable with it this time around. > Thanks for all of your support and prayers. > mom to 3D's in Dallas ( 10, Dylan 3, and 9 mos. > CHaRGEr) > > > > > > > good luck > > > > > > > > > > - > > > I hope the eye surgery goes well and that everything happens as a > " best > > > case > > > scenario " . Aubrie had several tear duct probes and finally stents > > because > > > her ducts would block. It didn't cause major problems for her -- no > > > infections -- just gunk and tearing. > > > > > > Michele W > > > mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ > > > > > > > > > > > > > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > > > http://www.imagestation.com/album/?id=2117043995 > > > > > > Membership of this email support group does not constitute membership > in > > > the CHARGE Syndrome Foundation; for information about the CHARGE > > Syndrome > > > Foundation or to become a member (and get the newsletter), > > > please contact marion@... or visit > > > the web site at http://www.chargesyndrome.org > > > > > > 8th International > > > CHARGE Syndrome Conference, July, 2007. Information will be available > at > > > www.chargesyndrome.org or by calling 1-. > > > Quote Link to comment Share on other sites More sharing options...
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