Guest guest Posted September 17, 2002 Report Share Posted September 17, 2002 Welcome to the group! I am a 20 year old college student who was born with bilateral atresia. This group is a wealth of information. You will find that the members of this group have answers to questions you never even thought to ask! Bethany Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2002 Report Share Posted September 18, 2002 > > Lastly, what about hats and bike helmets. Sydney > > hates having anything on her head ... do I leave the > > hearing aid on or take it off? always wears his hearing aid AND his helmet. 's first helmet came down around his ears (I think most helmets for young children are this way). We cut away a small bit of the helmet so 's hearing aid would not contact it. If we didn't do this, the aid would rub against the helmet, make the helmet too tight, and cause the hearing aid to feedback too. With the cutout, it fit well and there was no feedback. My recommendation would be to find a way that she can wear both. Steve Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2002 Report Share Posted September 18, 2002 > > Lastly, what about hats and bike helmets. Sydney > > hates having anything on her head ... do I leave the > > hearing aid on or take it off? always wears his hearing aid AND his helmet. 's first helmet came down around his ears (I think most helmets for young children are this way). We cut away a small bit of the helmet so 's hearing aid would not contact it. If we didn't do this, the aid would rub against the helmet, make the helmet too tight, and cause the hearing aid to feedback too. With the cutout, it fit well and there was no feedback. My recommendation would be to find a way that she can wear both. Steve Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2002 Report Share Posted September 18, 2002 Hi, my son is now 6yrs old. He has bilateral microtia/atresia. We used to keep his hearing aide on by using a headband. has just finished his 4th surgery with Dr Romo(NY). He has had both ears constructed using polythelene and has BAHA's behind both ears. He is doing so well, that Dr Romo will be featuring in a brochure and may also be doing a story for Dateline. was on Dateline(Medical Miracles) last year. Any more info you need fell free to ask. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2002 Report Share Posted September 18, 2002 Hi, my son is now 6yrs old. He has bilateral microtia/atresia. We used to keep his hearing aide on by using a headband. has just finished his 4th surgery with Dr Romo(NY). He has had both ears constructed using polythelene and has BAHA's behind both ears. He is doing so well, that Dr Romo will be featuring in a brochure and may also be doing a story for Dateline. was on Dateline(Medical Miracles) last year. Any more info you need fell free to ask. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2002 Report Share Posted September 18, 2002 Hi, my son is now 6yrs old. He has bilateral microtia/atresia. We used to keep his hearing aide on by using a headband. has just finished his 4th surgery with Dr Romo(NY). He has had both ears constructed using polythelene and has BAHA's behind both ears. He is doing so well, that Dr Romo will be featuring in a brochure and may also be doing a story for Dateline. was on Dateline(Medical Miracles) last year. Any more info you need fell free to ask. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2002 Report Share Posted September 18, 2002 HI, I'm also "trying" to get my insurance to okay for us to go and meet with Dr Romo in NYC. Any info you could share with me would be wonderful. Do you have any pics of posted anywhere? -----Original Message-----From: jbianca@... Sent: Wednesday, September 18, 2002 4:54 PMTo: AtresiaMicrotia Subject: Re: Re: Greetings!Hi, my son is now 6yrs old. He has bilateral microtia/atresia. We used to keep his hearing aide on by using a headband. has just finished his 4th surgery with Dr Romo(NY). He has had both ears constructed using polythelene and has BAHA's behind both ears. He is doing so well, that Dr Romo will be featuring in a brochure and may also be doing a story for Dateline. was on Dateline(Medical Miracles) last year. Any more info you need fell free to ask. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2002 Report Share Posted September 18, 2002 HI, I'm also "trying" to get my insurance to okay for us to go and meet with Dr Romo in NYC. Any info you could share with me would be wonderful. Do you have any pics of posted anywhere? -----Original Message-----From: jbianca@... Sent: Wednesday, September 18, 2002 4:54 PMTo: AtresiaMicrotia Subject: Re: Re: Greetings!Hi, my son is now 6yrs old. He has bilateral microtia/atresia. We used to keep his hearing aide on by using a headband. has just finished his 4th surgery with Dr Romo(NY). He has had both ears constructed using polythelene and has BAHA's behind both ears. He is doing so well, that Dr Romo will be featuring in a brochure and may also be doing a story for Dateline. was on Dateline(Medical Miracles) last year. Any more info you need fell free to ask. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2002 Report Share Posted September 18, 2002 HI, I'm also "trying" to get my insurance to okay for us to go and meet with Dr Romo in NYC. Any info you could share with me would be wonderful. Do you have any pics of posted anywhere? -----Original Message-----From: jbianca@... Sent: Wednesday, September 18, 2002 4:54 PMTo: AtresiaMicrotia Subject: Re: Re: Greetings!Hi, my son is now 6yrs old. He has bilateral microtia/atresia. We used to keep his hearing aide on by using a headband. has just finished his 4th surgery with Dr Romo(NY). He has had both ears constructed using polythelene and has BAHA's behind both ears. He is doing so well, that Dr Romo will be featuring in a brochure and may also be doing a story for Dateline. was on Dateline(Medical Miracles) last year. Any more info you need fell free to ask. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2002 Report Share Posted September 18, 2002 > I have another question I'd like to pose to the > broader group. I am a first time mom and I always > thought I would have more than one child. I wouldn't > consider it until Sydney is 2 or 3 years old, but a > part of me feels that it wouldn't be fair to her that > I have to divide my time between her and another > sibling. Plus given 's comments about the > difficulty of raising 3 children, would it be fair to > either child. Has anyone else struggled with this > issue?? We had our 1st and second child 2 years apart (almost to the day). The first two years were quite busy, two babies in diapers, then toilet training one, trying to keep the older one from stomping on his younger brother etc. etc...But, the payoff is here now. Since they have been 3 and 5 (they are now 5 and 7) they have been the best buddies. Once the younger of the two is old enough to play with the older, they have a built in friend and play partner every day. It is great seeing the two of them play with each other. Often they have breakfast, and then go play. We have to interrupt them at lunch time, and then they go back to playing. They have a great time. Now I am not saying all kids will be this way, we have friends with kids the same ages that fight a lot. Luck of the draw I guess. Anyway, we now have our third to round out our set (two boys, 7 and 5, one girl 3 months old). It is busy in our house again...but our house was always busy. We have been doing a lot of renovations to the house, now they have really slowed down because of the new baby. As she gets older, we will get back to the renovations. I wouldn't base your decision for more children on " splitting your time between them " . As they get older, the sibling may actually help the issue. The kids often have friends over, and it is easier to watch 4 kids, than it is to watch 2. The 4 of them have a great time playing with each other, and are this happy, and require less time of the adults. Having said all this, I want to be clear that I am not trying to convince you to have more. I am just trying to let you know what our experience has been with two, and now three children. Steve Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2002 Report Share Posted September 18, 2002 > I have another question I'd like to pose to the > broader group. I am a first time mom and I always > thought I would have more than one child. I wouldn't > consider it until Sydney is 2 or 3 years old, but a > part of me feels that it wouldn't be fair to her that > I have to divide my time between her and another > sibling. Plus given 's comments about the > difficulty of raising 3 children, would it be fair to > either child. Has anyone else struggled with this > issue?? We had our 1st and second child 2 years apart (almost to the day). The first two years were quite busy, two babies in diapers, then toilet training one, trying to keep the older one from stomping on his younger brother etc. etc...But, the payoff is here now. Since they have been 3 and 5 (they are now 5 and 7) they have been the best buddies. Once the younger of the two is old enough to play with the older, they have a built in friend and play partner every day. It is great seeing the two of them play with each other. Often they have breakfast, and then go play. We have to interrupt them at lunch time, and then they go back to playing. They have a great time. Now I am not saying all kids will be this way, we have friends with kids the same ages that fight a lot. Luck of the draw I guess. Anyway, we now have our third to round out our set (two boys, 7 and 5, one girl 3 months old). It is busy in our house again...but our house was always busy. We have been doing a lot of renovations to the house, now they have really slowed down because of the new baby. As she gets older, we will get back to the renovations. I wouldn't base your decision for more children on " splitting your time between them " . As they get older, the sibling may actually help the issue. The kids often have friends over, and it is easier to watch 4 kids, than it is to watch 2. The 4 of them have a great time playing with each other, and are this happy, and require less time of the adults. Having said all this, I want to be clear that I am not trying to convince you to have more. I am just trying to let you know what our experience has been with two, and now three children. Steve Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2002 Report Share Posted September 18, 2002 Also any thoughts on flying with a baby with atreticears? How do they handle changes in cabin pressure? I've been told that the pain is caused when trapped air is having trouble getting out of the ear canal. So a child with bilateral atresia would not have that trouble as air would not get in the ear canal in the first place. I hope this is true as we are flying for the first time in November! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2002 Report Share Posted September 19, 2002 There's been very few pics taken of this past year as he was going through 4 stages of surgery. He is pretty well healed now so I hope to display pics of him soon. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2002 Report Share Posted September 19, 2002 There's been very few pics taken of this past year as he was going through 4 stages of surgery. He is pretty well healed now so I hope to display pics of him soon. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2002 Report Share Posted September 19, 2002 We applaud the moms in our group an awful lot - here's to Dad's like you, and Jack, and Steve, and all the others who are doing a fantastic job of being fantastic Dads! God bless you all and hugs to . Love, beth ::blush:: aw shucks, miss marybeth! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2002 Report Share Posted September 19, 2002 We applaud the moms in our group an awful lot - here's to Dad's like you, and Jack, and Steve, and all the others who are doing a fantastic job of being fantastic Dads! God bless you all and hugs to . Love, beth ::blush:: aw shucks, miss marybeth! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2002 Report Share Posted September 19, 2002 We applaud the moms in our group an awful lot - here's to Dad's like you, and Jack, and Steve, and all the others who are doing a fantastic job of being fantastic Dads! God bless you all and hugs to . Love, beth ::blush:: aw shucks, miss marybeth! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2002 Report Share Posted September 19, 2002 Hi ! So glad to hear that both you and are doing so well! It is so great to be able to hear and share in the success stories for our young ones. I'm sure through all of this is learning what a special person he truly is and how neat for him to see his picture on brochures and TV! We applaud the moms in our group an awful lot - here's to Dad's like you, and Jack, and Steve, and all the others who are doing a fantastic job of being fantastic Dads! God bless you all and hugs to . Love, beth >From: jbianca@... >Reply-To: AtresiaMicrotia >To: AtresiaMicrotia >Subject: Re: Re: Greetings! >Date: Wed, 18 Sep 2002 16:54:02 -0400 > >Hi, my son is now 6yrs old. He has bilateral microtia/atresia. We used to >keep his hearing aide on by using a headband. has just finished his >4th surgery with Dr Romo(NY). He has had both ears constructed using >polythelene and has BAHA's behind both ears. He is doing so well, that Dr >Romo will be featuring in a brochure and may also be doing >a story for Dateline. was on Dateline(Medical Miracles) last year. >Any more info you need fell free to ask. _________________________________________________________________ MSN Photos is the easiest way to share and print your photos: http://photos.msn.com/support/worldwide.aspx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2002 Report Share Posted September 19, 2002 Hi ! So glad to hear that both you and are doing so well! It is so great to be able to hear and share in the success stories for our young ones. I'm sure through all of this is learning what a special person he truly is and how neat for him to see his picture on brochures and TV! We applaud the moms in our group an awful lot - here's to Dad's like you, and Jack, and Steve, and all the others who are doing a fantastic job of being fantastic Dads! God bless you all and hugs to . Love, beth >From: jbianca@... >Reply-To: AtresiaMicrotia >To: AtresiaMicrotia >Subject: Re: Re: Greetings! >Date: Wed, 18 Sep 2002 16:54:02 -0400 > >Hi, my son is now 6yrs old. He has bilateral microtia/atresia. We used to >keep his hearing aide on by using a headband. has just finished his >4th surgery with Dr Romo(NY). He has had both ears constructed using >polythelene and has BAHA's behind both ears. He is doing so well, that Dr >Romo will be featuring in a brochure and may also be doing >a story for Dateline. was on Dateline(Medical Miracles) last year. >Any more info you need fell free to ask. _________________________________________________________________ MSN Photos is the easiest way to share and print your photos: http://photos.msn.com/support/worldwide.aspx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2002 Report Share Posted September 19, 2002 Hi ! So glad to hear that both you and are doing so well! It is so great to be able to hear and share in the success stories for our young ones. I'm sure through all of this is learning what a special person he truly is and how neat for him to see his picture on brochures and TV! We applaud the moms in our group an awful lot - here's to Dad's like you, and Jack, and Steve, and all the others who are doing a fantastic job of being fantastic Dads! God bless you all and hugs to . Love, beth >From: jbianca@... >Reply-To: AtresiaMicrotia >To: AtresiaMicrotia >Subject: Re: Re: Greetings! >Date: Wed, 18 Sep 2002 16:54:02 -0400 > >Hi, my son is now 6yrs old. He has bilateral microtia/atresia. We used to >keep his hearing aide on by using a headband. has just finished his >4th surgery with Dr Romo(NY). He has had both ears constructed using >polythelene and has BAHA's behind both ears. He is doing so well, that Dr >Romo will be featuring in a brochure and may also be doing >a story for Dateline. was on Dateline(Medical Miracles) last year. >Any more info you need fell free to ask. _________________________________________________________________ MSN Photos is the easiest way to share and print your photos: http://photos.msn.com/support/worldwide.aspx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2002 Report Share Posted September 19, 2002 Also any thoughts on flying with a baby with atreticears? How do they handle changes in cabin pressure? I've been told that the pain is caused when trapped air is having trouble getting out of the ear canal. So a child with bilateral atresia would not have that trouble as air would not get in the ear canal in the first place. I hope this is true as we are flying for the first time in November! It is true that the pain is caused by air being trapped, and then the air preassure in the plane goes up (or down) and the air pressure in the ear stays the same. This differential is what causes the pain. However, not having ear canals does not mean this can't happen. (everyone check me on this) but even with ear canals, there is no "air" path betrween the outside world, and the middle ear. There is the tympanic membrane (or ear drum) in the way. So whether there is actually an ear canal or not, makes no difference in the ear pressure thing. The air gets in and out of the middle ear through the eustation tube. If this tube is blocked, the air is trapped. I found this on the web, which explains how the eustation tube works: "The middle ear should be filled with air. When we swallow the eustation tube should open and air goes into the middle ear which allows the ear to work properly. In children the eustation tube is shorter and often becomes blocked. Fluid, like glue, builds up and hearing is poor. Fluid in the ear is most common in children under four years of although older children also suffer with it as do adults." This is why when you have troubles on the airplane, people say to chew gum, it causes you to swallow, and that opens the eustation tubes to equalize the pressure. Steve Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2002 Report Share Posted September 19, 2002 Also any thoughts on flying with a baby with atreticears? How do they handle changes in cabin pressure? I've been told that the pain is caused when trapped air is having trouble getting out of the ear canal. So a child with bilateral atresia would not have that trouble as air would not get in the ear canal in the first place. I hope this is true as we are flying for the first time in November! It is true that the pain is caused by air being trapped, and then the air preassure in the plane goes up (or down) and the air pressure in the ear stays the same. This differential is what causes the pain. However, not having ear canals does not mean this can't happen. (everyone check me on this) but even with ear canals, there is no "air" path betrween the outside world, and the middle ear. There is the tympanic membrane (or ear drum) in the way. So whether there is actually an ear canal or not, makes no difference in the ear pressure thing. The air gets in and out of the middle ear through the eustation tube. If this tube is blocked, the air is trapped. I found this on the web, which explains how the eustation tube works: "The middle ear should be filled with air. When we swallow the eustation tube should open and air goes into the middle ear which allows the ear to work properly. In children the eustation tube is shorter and often becomes blocked. Fluid, like glue, builds up and hearing is poor. Fluid in the ear is most common in children under four years of although older children also suffer with it as do adults." This is why when you have troubles on the airplane, people say to chew gum, it causes you to swallow, and that opens the eustation tubes to equalize the pressure. Steve Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2002 Report Share Posted September 19, 2002 Please let us know when the Dateline program is to be aired - we would love to watch the program! Re: Re: Greetings! Hi, my son is now 6yrs old. He has bilateral microtia/atresia. We used to keep his hearing aide on by using a headband. has just finished his 4th surgery with Dr Romo(NY). He has had both ears constructed using polythelene and has BAHA's behind both ears. He is doing so well, that Dr Romo will be featuring in a brochure and may also be doing a story for Dateline. was on Dateline(Medical Miracles) last year. Any more info you need fell free to ask. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2002 Report Share Posted September 19, 2002 Please let us know when the Dateline program is to be aired - we would love to watch the program! Re: Re: Greetings! Hi, my son is now 6yrs old. He has bilateral microtia/atresia. We used to keep his hearing aide on by using a headband. has just finished his 4th surgery with Dr Romo(NY). He has had both ears constructed using polythelene and has BAHA's behind both ears. He is doing so well, that Dr Romo will be featuring in a brochure and may also be doing a story for Dateline. was on Dateline(Medical Miracles) last year. Any more info you need fell free to ask. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2002 Report Share Posted September 19, 2002 Please let us know when the Dateline program is to be aired - we would love to watch the program! Re: Re: Greetings! Hi, my son is now 6yrs old. He has bilateral microtia/atresia. We used to keep his hearing aide on by using a headband. has just finished his 4th surgery with Dr Romo(NY). He has had both ears constructed using polythelene and has BAHA's behind both ears. He is doing so well, that Dr Romo will be featuring in a brochure and may also be doing a story for Dateline. was on Dateline(Medical Miracles) last year. Any more info you need fell free to ask. Quote Link to comment Share on other sites More sharing options...
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