Guest guest Posted October 19, 2006 Report Share Posted October 19, 2006 Aubrie's ear surgery was scheduled for Tues. We got up at 5am, drove 3 hours, waited til past noon, to find out that the BAHA screw hadn't arrived. So much for UPS guaranteed 9am delivery! So after starving all am, Aubrie got to eat and we took off. We stayed at the hospital's guest house which was absolutely beautiful! My mom had gone with me so we had a fun enough time - found THE pizza joint for the town, visited some fun shops, etc. This am, we headed back in for another try. The screw was ready. My little girl is so brave. Somewhere in the shuffle, we'd lost her security animal - Bernie the Brave. And this hospital would not let me take her into the OR and stay with her til she was asleep - which I've done at St Louis Children's and Chicago Children's. Anyway-she went in with no pre-med (because we no longer do Versed after a bad experience with it) and no mama. In recovery, she cried a bit when I wasn't there immediately when she first opened her eyes, but calmed quickly as they called me down. Here's the miracle part. The 2nd bone of the inner ear (anvil or incus) was malformed. But everything else was good! So the dr used her bone, carved it to the proper shape, and reset everything. It was a standard, simple procedure. It's quite possible for her hearing to get within 10 db of the maximum capacity of the auditory nerve. Since her hearing was so good with the bone conduction aid, we don't think there's significant damage to the nerve. So. what if she could hear as well in this ear as her " good " one??? Imagine if she could localize sounds. That would change her life. Imagine if she could hear pretty well with *both* ears unaided. Imagine if she needed low-powered aids for perfect hearing. We are so excited - but trying not to celebrate too much til she heals and we know for sure. But you know Aubrie - her life has been full of miracles. It'll be about a 3 week healing process. Our hope will be that the scar tissue does what it is supposed to and doesn't pull the bones out of place. What will be interesting is to see how she responds during the healing process. He said she'll be hearing all kinds of weird things - popping, crackling, ringing, her own heart beating, etc - and that it will all come and go. As her hearing improves, that too will come and go until it finally settles. But no incisions to heal. Nothing to worry about really from a day-to-day point of view. She has a sponge wick in her ear that's driving her crazy. It needs to stay til Monday but no biggie. So keep those fingers crossed and prayers coming and whatever else you do for good luck. Aubrie asked me before the surgery, " If the doctor can fix my ear, will it be a miracle? " Well, I sort of think it will. Given all the complications of CHARGE, if this can restore her hearing, we'll be rejoicing! Michele W Aubrie's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2006 Report Share Posted October 19, 2006 Michele, My prayers are being said, my fingers are crossed, and I'll even knock on wood a lot. It sounds like you ended up having a grand experience. Hugs - Martha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2006 Report Share Posted October 19, 2006 I am so glad to read this email!! That is wonderful news for you and Aubrie and your family. They say that miracles happen every day... I especially love when they happen to our kids!! ina, mom to Luca (3) & Vinny (16 months w/ cHARgE) --- Michele Westmaas wrote: > Aubrie's ear surgery was scheduled for Tues. We got > up at 5am, drove 3 > hours, waited til past noon, to find out that the > BAHA screw hadn't arrived. > So much for UPS guaranteed 9am delivery! So after > starving all am, Aubrie > got to eat and we took off. We stayed at the > hospital's guest house which > was absolutely beautiful! My mom had gone with me > so we had a fun enough > time - found THE pizza joint for the town, visited > some fun shops, etc. > > > > This am, we headed back in for another try. The > screw was ready. My little > girl is so brave. Somewhere in the shuffle, we'd > lost her security animal - > Bernie the Brave. And this hospital would not let > me take her into the OR > and stay with her til she was asleep - which I've > done at St Louis > Children's and Chicago Children's. Anyway-she went > in with no pre-med > (because we no longer do Versed after a bad > experience with it) and no mama. > In recovery, she cried a bit when I wasn't there > immediately when she first > opened her eyes, but calmed quickly as they called > me down. > > > > Here's the miracle part. The 2nd bone of the inner > ear (anvil or incus) was > malformed. But everything else was good! So the dr > used her bone, carved > it to the proper shape, and reset everything. It > was a standard, simple > procedure. It's quite possible for her hearing to > get within 10 db of the > maximum capacity of the auditory nerve. Since her > hearing was so good with > the bone conduction aid, we don't think there's > significant damage to the > nerve. So. what if she could hear as well in this > ear as her " good " one??? > Imagine if she could localize sounds. That would > change her life. Imagine > if she could hear pretty well with *both* ears > unaided. Imagine if she > needed low-powered aids for perfect hearing. We are > so excited - but trying > not to celebrate too much til she heals and we know > for sure. > > > > But you know Aubrie - her life has been full of > miracles. > > > > It'll be about a 3 week healing process. Our hope > will be that the scar > tissue does what it is supposed to and doesn't pull > the bones out of place. > What will be interesting is to see how she responds > during the healing > process. He said she'll be hearing all kinds of > weird things - popping, > crackling, ringing, her own heart beating, etc - and > that it will all come > and go. As her hearing improves, that too will come > and go until it finally > settles. > > > > But no incisions to heal. Nothing to worry about > really from a day-to-day > point of view. She has a sponge wick in her ear > that's driving her crazy. > It needs to stay til Monday but no biggie. > > > > So keep those fingers crossed and prayers coming and > whatever else you do > for good luck. Aubrie asked me before the surgery, > " If the doctor can fix > my ear, will it be a miracle? " Well, I sort of > think it will. Given all > the complications of CHARGE, if this can restore her > hearing, we'll be > rejoicing! > > > > Michele W > Aubrie's mom > > > > [Non-text portions of this message have been > removed] > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2006 Report Share Posted October 19, 2006 WOW!!! I am sooooo excited for you and Miss Aubrie! Keep us posted please!!! Michele Westmaas wrote: Aubrie's ear surgery was scheduled for Tues. We got up at 5am, drove 3 hours, waited til past noon, to find out that the BAHA screw hadn't arrived. So much for UPS guaranteed 9am delivery! So after starving all am, Aubrie got to eat and we took off. We stayed at the hospital's guest house which was absolutely beautiful! My mom had gone with me so we had a fun enough time - found THE pizza joint for the town, visited some fun shops, etc. This am, we headed back in for another try. The screw was ready. My little girl is so brave. Somewhere in the shuffle, we'd lost her security animal - Bernie the Brave. And this hospital would not let me take her into the OR and stay with her til she was asleep - which I've done at St Louis Children's and Chicago Children's. Anyway-she went in with no pre-med (because we no longer do Versed after a bad experience with it) and no mama. In recovery, she cried a bit when I wasn't there immediately when she first opened her eyes, but calmed quickly as they called me down. Here's the miracle part. The 2nd bone of the inner ear (anvil or incus) was malformed. But everything else was good! So the dr used her bone, carved it to the proper shape, and reset everything. It was a standard, simple procedure. It's quite possible for her hearing to get within 10 db of the maximum capacity of the auditory nerve. Since her hearing was so good with the bone conduction aid, we don't think there's significant damage to the nerve. So. what if she could hear as well in this ear as her " good " one??? Imagine if she could localize sounds. That would change her life. Imagine if she could hear pretty well with *both* ears unaided. Imagine if she needed low-powered aids for perfect hearing. We are so excited - but trying not to celebrate too much til she heals and we know for sure. But you know Aubrie - her life has been full of miracles. It'll be about a 3 week healing process. Our hope will be that the scar tissue does what it is supposed to and doesn't pull the bones out of place. What will be interesting is to see how she responds during the healing process. He said she'll be hearing all kinds of weird things - popping, crackling, ringing, her own heart beating, etc - and that it will all come and go. As her hearing improves, that too will come and go until it finally settles. But no incisions to heal. Nothing to worry about really from a day-to-day point of view. She has a sponge wick in her ear that's driving her crazy. It needs to stay til Monday but no biggie. So keep those fingers crossed and prayers coming and whatever else you do for good luck. Aubrie asked me before the surgery, " If the doctor can fix my ear, will it be a miracle? " Well, I sort of think it will. Given all the complications of CHARGE, if this can restore her hearing, we'll be rejoicing! Michele W Aubrie's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2006 Report Share Posted October 19, 2006 Whats BAHA surgery again??? i am thinking of youse > > WOW!!! I am sooooo excited for you and Miss Aubrie! Keep us posted > please!!! > > Michele Westmaas <momonamission@... <momonamission%40verizon.net>> > wrote: Aubrie's ear surgery was scheduled for Tues. We got up at 5am, drove > 3 > > hours, waited til past noon, to find out that the BAHA screw hadn't > arrived. > So much for UPS guaranteed 9am delivery! So after starving all am, Aubrie > got to eat and we took off. We stayed at the hospital's guest house which > was absolutely beautiful! My mom had gone with me so we had a fun enough > time - found THE pizza joint for the town, visited some fun shops, etc. > > This am, we headed back in for another try. The screw was ready. My little > girl is so brave. Somewhere in the shuffle, we'd lost her security animal > - > Bernie the Brave. And this hospital would not let me take her into the OR > and stay with her til she was asleep - which I've done at St Louis > Children's and Chicago Children's. Anyway-she went in with no pre-med > (because we no longer do Versed after a bad experience with it) and no > mama. > In recovery, she cried a bit when I wasn't there immediately when she > first > opened her eyes, but calmed quickly as they called me down. > > Here's the miracle part. The 2nd bone of the inner ear (anvil or incus) > was > malformed. But everything else was good! So the dr used her bone, carved > it to the proper shape, and reset everything. It was a standard, simple > procedure. It's quite possible for her hearing to get within 10 db of the > maximum capacity of the auditory nerve. Since her hearing was so good with > the bone conduction aid, we don't think there's significant damage to the > nerve. So. what if she could hear as well in this ear as her " good " one??? > Imagine if she could localize sounds. That would change her life. Imagine > if she could hear pretty well with *both* ears unaided. Imagine if she > needed low-powered aids for perfect hearing. We are so excited - but > trying > not to celebrate too much til she heals and we know for sure. > > But you know Aubrie - her life has been full of miracles. > > It'll be about a 3 week healing process. Our hope will be that the scar > tissue does what it is supposed to and doesn't pull the bones out of > place. > What will be interesting is to see how she responds during the healing > process. He said she'll be hearing all kinds of weird things - popping, > crackling, ringing, her own heart beating, etc - and that it will all come > and go. As her hearing improves, that too will come and go until it > finally > settles. > > But no incisions to heal. Nothing to worry about really from a day-to-day > point of view. She has a sponge wick in her ear that's driving her crazy. > It needs to stay til Monday but no biggie. > > So keep those fingers crossed and prayers coming and whatever else you do > for good luck. Aubrie asked me before the surgery, " If the doctor can fix > my ear, will it be a miracle? " Well, I sort of think it will. Given all > the complications of CHARGE, if this can restore her hearing, we'll be > rejoicing! > > Michele W > Aubrie's mom > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2006 Report Share Posted October 19, 2006 wow great news did they acutaly do thescrew then or didnt they need to > > Whats BAHA surgery again??? > > i am thinking of youse > > On 10/19/06, Amy McKinley <amysmckinley@...<amysmckinley%40yahoo.com>> > wrote: > > > > WOW!!! I am sooooo excited for you and Miss Aubrie! Keep us posted > > please!!! > > > > Michele Westmaas <momonamission@...<momonamission%40verizon.net><momonamission%40verizon.\ net>> > > wrote: Aubrie's ear surgery was scheduled for Tues. We got up at 5am, > drove > > 3 > > > > hours, waited til past noon, to find out that the BAHA screw hadn't > > arrived. > > So much for UPS guaranteed 9am delivery! So after starving all am, > Aubrie > > got to eat and we took off. We stayed at the hospital's guest house > which > > was absolutely beautiful! My mom had gone with me so we had a fun enough > > time - found THE pizza joint for the town, visited some fun shops, etc. > > > > This am, we headed back in for another try. The screw was ready. My > little > > girl is so brave. Somewhere in the shuffle, we'd lost her security > animal > > - > > Bernie the Brave. And this hospital would not let me take her into the > OR > > and stay with her til she was asleep - which I've done at St Louis > > Children's and Chicago Children's. Anyway-she went in with no pre-med > > (because we no longer do Versed after a bad experience with it) and no > > mama. > > In recovery, she cried a bit when I wasn't there immediately when she > > first > > opened her eyes, but calmed quickly as they called me down. > > > > Here's the miracle part. The 2nd bone of the inner ear (anvil or incus) > > was > > malformed. But everything else was good! So the dr used her bone, carved > > it to the proper shape, and reset everything. It was a standard, simple > > procedure. It's quite possible for her hearing to get within 10 db of > the > > maximum capacity of the auditory nerve. Since her hearing was so good > with > > the bone conduction aid, we don't think there's significant damage to > the > > nerve. So. what if she could hear as well in this ear as her " good " > one??? > > Imagine if she could localize sounds. That would change her life. > Imagine > > if she could hear pretty well with *both* ears unaided. Imagine if she > > needed low-powered aids for perfect hearing. We are so excited - but > > trying > > not to celebrate too much til she heals and we know for sure. > > > > But you know Aubrie - her life has been full of miracles. > > > > It'll be about a 3 week healing process. Our hope will be that the scar > > tissue does what it is supposed to and doesn't pull the bones out of > > place. > > What will be interesting is to see how she responds during the healing > > process. He said she'll be hearing all kinds of weird things - popping, > > crackling, ringing, her own heart beating, etc - and that it will all > come > > and go. As her hearing improves, that too will come and go until it > > finally > > settles. > > > > But no incisions to heal. Nothing to worry about really from a > day-to-day > > point of view. She has a sponge wick in her ear that's driving her > crazy. > > It needs to stay til Monday but no biggie. > > > > So keep those fingers crossed and prayers coming and whatever else you > do > > for good luck. Aubrie asked me before the surgery, " If the doctor can > fix > > my ear, will it be a miracle? " Well, I sort of think it will. Given all > > the complications of CHARGE, if this can restore her hearing, we'll be > > rejoicing! > > > > Michele W > > Aubrie's mom > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2006 Report Share Posted October 19, 2006 That's GREAT news Michele, please continue to keep us updated. > > Aubrie's ear surgery was scheduled for Tues. We got up at 5am, drove 3 > hours, waited til past noon, to find out that the BAHA screw hadn't > arrived. > So much for UPS guaranteed 9am delivery! So after starving all am, Aubrie > got to eat and we took off. We stayed at the hospital's guest house which > was absolutely beautiful! My mom had gone with me so we had a fun enough > time - found THE pizza joint for the town, visited some fun shops, etc. > > This am, we headed back in for another try. The screw was ready. My little > girl is so brave. Somewhere in the shuffle, we'd lost her security animal > - > Bernie the Brave. And this hospital would not let me take her into the OR > and stay with her til she was asleep - which I've done at St Louis > Children's and Chicago Children's. Anyway-she went in with no pre-med > (because we no longer do Versed after a bad experience with it) and no > mama. > In recovery, she cried a bit when I wasn't there immediately when she > first > opened her eyes, but calmed quickly as they called me down. > > Here's the miracle part. The 2nd bone of the inner ear (anvil or incus) > was > malformed. But everything else was good! So the dr used her bone, carved > it to the proper shape, and reset everything. It was a standard, simple > procedure. It's quite possible for her hearing to get within 10 db of the > maximum capacity of the auditory nerve. Since her hearing was so good with > the bone conduction aid, we don't think there's significant damage to the > nerve. So. what if she could hear as well in this ear as her " good " one??? > Imagine if she could localize sounds. That would change her life. Imagine > if she could hear pretty well with *both* ears unaided. Imagine if she > needed low-powered aids for perfect hearing. We are so excited - but > trying > not to celebrate too much til she heals and we know for sure. > > But you know Aubrie - her life has been full of miracles. > > It'll be about a 3 week healing process. Our hope will be that the scar > tissue does what it is supposed to and doesn't pull the bones out of > place. > What will be interesting is to see how she responds during the healing > process. He said she'll be hearing all kinds of weird things - popping, > crackling, ringing, her own heart beating, etc - and that it will all come > and go. As her hearing improves, that too will come and go until it > finally > settles. > > But no incisions to heal. Nothing to worry about really from a day-to-day > point of view. She has a sponge wick in her ear that's driving her crazy. > It needs to stay til Monday but no biggie. > > So keep those fingers crossed and prayers coming and whatever else you do > for good luck. Aubrie asked me before the surgery, " If the doctor can fix > my ear, will it be a miracle? " Well, I sort of think it will. Given all > the complications of CHARGE, if this can restore her hearing, we'll be > rejoicing! > > Michele W > Aubrie's mom > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2006 Report Share Posted October 19, 2006 hugs to all--hope the hearing is a miracle maria FW: Hoping for a miracle Aubrie's ear surgery was scheduled for Tues. We got up at 5am, drove 3 hours, waited til past noon, to find out that the BAHA screw hadn't arrived. So much for UPS guaranteed 9am delivery! So after starving all am, Aubrie got to eat and we took off. We stayed at the hospital's guest house which was absolutely beautiful! My mom had gone with me so we had a fun enough time - found THE pizza joint for the town, visited some fun shops, etc. This am, we headed back in for another try. The screw was ready. My little girl is so brave. Somewhere in the shuffle, we'd lost her security animal - Bernie the Brave. And this hospital would not let me take her into the OR and stay with her til she was asleep - which I've done at St Louis Children's and Chicago Children's. Anyway-she went in with no pre-med (because we no longer do Versed after a bad experience with it) and no mama. In recovery, she cried a bit when I wasn't there immediately when she first opened her eyes, but calmed quickly as they called me down. Here's the miracle part. The 2nd bone of the inner ear (anvil or incus) was malformed. But everything else was good! So the dr used her bone, carved it to the proper shape, and reset everything. It was a standard, simple procedure. It's quite possible for her hearing to get within 10 db of the maximum capacity of the auditory nerve. Since her hearing was so good with the bone conduction aid, we don't think there's significant damage to the nerve. So. what if she could hear as well in this ear as her " good " one??? Imagine if she could localize sounds. That would change her life. Imagine if she could hear pretty well with *both* ears unaided. Imagine if she needed low-powered aids for perfect hearing. We are so excited - but trying not to celebrate too much til she heals and we know for sure. But you know Aubrie - her life has been full of miracles. It'll be about a 3 week healing process. Our hope will be that the scar tissue does what it is supposed to and doesn't pull the bones out of place. What will be interesting is to see how she responds during the healing process. He said she'll be hearing all kinds of weird things - popping, crackling, ringing, her own heart beating, etc - and that it will all come and go. As her hearing improves, that too will come and go until it finally settles. But no incisions to heal. Nothing to worry about really from a day-to-day point of view. She has a sponge wick in her ear that's driving her crazy. It needs to stay til Monday but no biggie. So keep those fingers crossed and prayers coming and whatever else you do for good luck. Aubrie asked me before the surgery, " If the doctor can fix my ear, will it be a miracle? " Well, I sort of think it will. Given all the complications of CHARGE, if this can restore her hearing, we'll be rejoicing! Michele W Aubrie's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2006 Report Share Posted October 19, 2006 Michele, You can try to talk right into the side with the screw. She can probably hear a bit without the device in. I know it sounds crazy but after 's surgery he was responding to us and he obviously didn't have the BAHA in yet because he had just got implanted and was bandaged up. But for some reason sound still bounces off. is completely deaf in both ears so this was a miracle. Give it a try. heard all those weird things at first too. He still has trouble localizing sound but doesn't have hearing on the other side, so Aubrie should do great. Good luck. Debbie FW: Hoping for a miracle Aubrie's ear surgery was scheduled for Tues. We got up at 5am, drove 3 hours, waited til past noon, to find out that the BAHA screw hadn't arrived. So much for UPS guaranteed 9am delivery! So after starving all am, Aubrie got to eat and we took off. We stayed at the hospital's guest house which was absolutely beautiful! My mom had gone with me so we had a fun enough time - found THE pizza joint for the town, visited some fun shops, etc. This am, we headed back in for another try. The screw was ready. My little girl is so brave. Somewhere in the shuffle, we'd lost her security animal - Bernie the Brave. And this hospital would not let me take her into the OR and stay with her til she was asleep - which I've done at St Louis Children's and Chicago Children's. Anyway-she went in with no pre-med (because we no longer do Versed after a bad experience with it) and no mama. In recovery, she cried a bit when I wasn't there immediately when she first opened her eyes, but calmed quickly as they called me down. Here's the miracle part. The 2nd bone of the inner ear (anvil or incus) was malformed. But everything else was good! So the dr used her bone, carved it to the proper shape, and reset everything. It was a standard, simple procedure. It's quite possible for her hearing to get within 10 db of the maximum capacity of the auditory nerve. Since her hearing was so good with the bone conduction aid, we don't think there's significant damage to the nerve. So. what if she could hear as well in this ear as her " good " one??? Imagine if she could localize sounds. That would change her life. Imagine if she could hear pretty well with *both* ears unaided. Imagine if she needed low-powered aids for perfect hearing. We are so excited - but trying not to celebrate too much til she heals and we know for sure. But you know Aubrie - her life has been full of miracles. It'll be about a 3 week healing process. Our hope will be that the scar tissue does what it is supposed to and doesn't pull the bones out of place. What will be interesting is to see how she responds during the healing process. He said she'll be hearing all kinds of weird things - popping, crackling, ringing, her own heart beating, etc - and that it will all come and go. As her hearing improves, that too will come and go until it finally settles. But no incisions to heal. Nothing to worry about really from a day-to-day point of view. She has a sponge wick in her ear that's driving her crazy. It needs to stay til Monday but no biggie. So keep those fingers crossed and prayers coming and whatever else you do for good luck. Aubrie asked me before the surgery, " If the doctor can fix my ear, will it be a miracle? " Well, I sort of think it will. Given all the complications of CHARGE, if this can restore her hearing, we'll be rejoicing! Michele W Aubrie's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2006 Report Share Posted October 19, 2006 Belinda- BAHA is a bone-anchored hearing aide. Michele W Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2006 Report Share Posted October 19, 2006 Ellen- They didn't need to use the screw because it's very likely she won't need a bone conduction hearing aide anymore. She may need a " small " air conduction aide. I don't know what he meant by small. I'm thinking small as in less powerful rather than smaller size. We'll see. Bad news is they shaved the place for the screw and you know it'll take forever for her hair to grow back! We pull her hair up most of the time because it gets in her eyes when she rocks so it'll be a bad fashion statement for long time. Michele _____ From: CHARGE [mailto:CHARGE ] On Behalf Of ellen howe Sent: Thursday, October 19, 2006 1:33 AM To: CHARGE Subject: Re: FW: Hoping for a miracle wow great news did they acutaly do thescrew then or didnt they need to Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2006 Report Share Posted October 19, 2006 Debbie- I didn't make it clear. Guess I was still tired! She did not get the screw placed - just had the bone fixed. We are hoping her hearing will be close to normal unaided. Michele W _____ From: CHARGE [mailto:CHARGE ] On Behalf Of Debbie Matasker Sent: Thursday, October 19, 2006 7:10 AM To: CHARGE Subject: RE: FW: Hoping for a miracle Michele, You can try to talk right into the side with the screw. She can probably hear a bit without the device in. I know it sounds crazy but after 's surgery he was responding to us and he obviously didn't have the BAHA in yet because he had just got implanted and was bandaged up. But for some reason sound still bounces off. is completely deaf in both ears so this was a miracle. Give it a try. heard all those weird things at first too. He still has trouble localizing sound but doesn't have hearing on the other side, so Aubrie should do great. Good luck. Debbie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2006 Report Share Posted October 19, 2006 MY thoughts and prayers are with you and Aubrie. I hope it all goes well. Hugs, Crystal mom to (10), (3), and Eva (18 month old CHARGEr) wife to Dan in Illinois > > > Aubrie's ear surgery was scheduled for Tues. We got > > up at 5am, drove 3 > > hours, waited til past noon, to find out that the > > BAHA screw hadn't arrived. > > So much for UPS guaranteed 9am delivery! So after > > starving all am, Aubrie > > got to eat and we took off. We stayed at the > > hospital's guest house which > > was absolutely beautiful! My mom had gone with me > > so we had a fun enough > > time - found THE pizza joint for the town, visited > > some fun shops, etc. > > > > > > > > This am, we headed back in for another try. The > > screw was ready. My little > > girl is so brave. Somewhere in the shuffle, we'd > > lost her security animal - > > Bernie the Brave. And this hospital would not let > > me take her into the OR > > and stay with her til she was asleep - which I've > > done at St Louis > > Children's and Chicago Children's. Anyway-she went > > in with no pre-med > > (because we no longer do Versed after a bad > > experience with it) and no mama. > > In recovery, she cried a bit when I wasn't there > > immediately when she first > > opened her eyes, but calmed quickly as they called > > me down. > > > > > > > > Here's the miracle part. The 2nd bone of the inner > > ear (anvil or incus) was > > malformed. But everything else was good! So the dr > > used her bone, carved > > it to the proper shape, and reset everything. It > > was a standard, simple > > procedure. It's quite possible for her hearing to > > get within 10 db of the > > maximum capacity of the auditory nerve. Since her > > hearing was so good with > > the bone conduction aid, we don't think there's > > significant damage to the > > nerve. So. what if she could hear as well in this > > ear as her " good " one??? > > Imagine if she could localize sounds. That would > > change her life. Imagine > > if she could hear pretty well with *both* ears > > unaided. Imagine if she > > needed low-powered aids for perfect hearing. We are > > so excited - but trying > > not to celebrate too much til she heals and we know > > for sure. > > > > > > > > But you know Aubrie - her life has been full of > > miracles. > > > > > > > > It'll be about a 3 week healing process. Our hope > > will be that the scar > > tissue does what it is supposed to and doesn't pull > > the bones out of place. > > What will be interesting is to see how she responds > > during the healing > > process. He said she'll be hearing all kinds of > > weird things - popping, > > crackling, ringing, her own heart beating, etc - and > > that it will all come > > and go. As her hearing improves, that too will come > > and go until it finally > > settles. > > > > > > > > But no incisions to heal. Nothing to worry about > > really from a day-to-day > > point of view. She has a sponge wick in her ear > > that's driving her crazy. > > It needs to stay til Monday but no biggie. > > > > > > > > So keep those fingers crossed and prayers coming and > > whatever else you do > > for good luck. Aubrie asked me before the surgery, > > " If the doctor can fix > > my ear, will it be a miracle? " Well, I sort of > > think it will. Given all > > the complications of CHARGE, if this can restore her > > hearing, we'll be > > rejoicing! > > > > > > > > Michele W > > Aubrie's mom > > > > > > > > [Non-text portions of this message have been > > removed] > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2006 Report Share Posted October 19, 2006 wow!! praying for the best!!!I hope you can post some great news!! Deepta > > Belinda- > > BAHA is a bone-anchored hearing aide. > > > > Michele W > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2006 Report Share Posted October 19, 2006 Oh, wow, that is great! Let us know. Debbie RE: FW: Hoping for a miracle Michele, You can try to talk right into the side with the screw. She can probably hear a bit without the device in. I know it sounds crazy but after 's surgery he was responding to us and he obviously didn't have the BAHA in yet because he had just got implanted and was bandaged up. But for some reason sound still bounces off. is completely deaf in both ears so this was a miracle. Give it a try. heard all those weird things at first too. He still has trouble localizing sound but doesn't have hearing on the other side, so Aubrie should do great. Good luck. Debbie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2006 Report Share Posted October 19, 2006 Michele, Wow!! This is a story!!! Like everyone, I will be on pins and needles waiting to see what happens. Also, you are right‹your pixie is very brave!!! Xo pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2006 Report Share Posted October 19, 2006 I'm so happy to read this news!! We are just starting our way to find out what sort of aid will help na, and learning this about Aubrie's surgery is wonderful. I wish her lots of luck, and hope my little girl be as brave as Aubrie is! Vanesa > > Aubrie's ear surgery was scheduled for Tues. We got up at 5am, drove 3 > hours, waited til past noon, to find out that the BAHA screw hadn't > arrived. > So much for UPS guaranteed 9am delivery! So after starving all am, Aubrie > got to eat and we took off. We stayed at the hospital's guest house which > was absolutely beautiful! My mom had gone with me so we had a fun enough > time - found THE pizza joint for the town, visited some fun shops, etc. > > This am, we headed back in for another try. The screw was ready. My little > girl is so brave. Somewhere in the shuffle, we'd lost her security animal > - > Bernie the Brave. And this hospital would not let me take her into the OR > and stay with her til she was asleep - which I've done at St Louis > Children's and Chicago Children's. Anyway-she went in with no pre-med > (because we no longer do Versed after a bad experience with it) and no > mama. > In recovery, she cried a bit when I wasn't there immediately when she > first > opened her eyes, but calmed quickly as they called me down. > > Here's the miracle part. The 2nd bone of the inner ear (anvil or incus) > was > malformed. But everything else was good! So the dr used her bone, carved > it to the proper shape, and reset everything. It was a standard, simple > procedure. It's quite possible for her hearing to get within 10 db of the > maximum capacity of the auditory nerve. Since her hearing was so good with > the bone conduction aid, we don't think there's significant damage to the > nerve. So. what if she could hear as well in this ear as her " good " one??? > Imagine if she could localize sounds. That would change her life. Imagine > if she could hear pretty well with *both* ears unaided. Imagine if she > needed low-powered aids for perfect hearing. We are so excited - but > trying > not to celebrate too much til she heals and we know for sure. > > But you know Aubrie - her life has been full of miracles. > > It'll be about a 3 week healing process. Our hope will be that the scar > tissue does what it is supposed to and doesn't pull the bones out of > place. > What will be interesting is to see how she responds during the healing > process. He said she'll be hearing all kinds of weird things - popping, > crackling, ringing, her own heart beating, etc - and that it will all come > and go. As her hearing improves, that too will come and go until it > finally > settles. > > But no incisions to heal. Nothing to worry about really from a day-to-day > point of view. She has a sponge wick in her ear that's driving her crazy. > It needs to stay til Monday but no biggie. > > So keep those fingers crossed and prayers coming and whatever else you do > for good luck. Aubrie asked me before the surgery, " If the doctor can fix > my ear, will it be a miracle? " Well, I sort of think it will. Given all > the complications of CHARGE, if this can restore her hearing, we'll be > rejoicing! > > Michele W > Aubrie's mom > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2006 Report Share Posted October 19, 2006 Vanesa- Understanding hearing and vision and how to best support each of those areas can be complicated. As you explore things for na, just keep asking questions to be sure you understand all that you can at each step. My understanding has grown over the years as I've learned more and as Aubrie's been able to tell me more about her own experiences. Today, Aubrie told me that she did cry a little bit in the OR when she was getting her gas. So we talked about how bravery isn't not being afraid. It's doing what you need to do even when you're afraid. She is incredibly brave and determined. Michele W Aubrie's mom 8 yrs _____ From: CHARGE [mailto:CHARGE ] On Behalf Of Vanesa Devetach Sent: Thursday, October 19, 2006 1:16 PM To: CHARGE Subject: Re: FW: Hoping for a miracle I'm so happy to read this news!! We are just starting our way to find out what sort of aid will help na, and learning this about Aubrie's surgery is wonderful. I wish her lots of luck, and hope my little girl be as brave as Aubrie is! Vanesa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2006 Report Share Posted October 20, 2006 Michele, I just opened my mail to 100 new messages and this was one of the first, and what great news. I'm so happy for Aubrie, I hope her recovery goes well. Judy Michele Westmaas wrote: Aubrie's ear surgery was scheduled for Tues. We got up at 5am, drove 3 hours, waited til past noon, to find out that the BAHA screw hadn't arrived. So much for UPS guaranteed 9am delivery! So after starving all am, Aubrie got to eat and we took off. We stayed at the hospital's guest house which was absolutely beautiful! My mom had gone with me so we had a fun enough time - found THE pizza joint for the town, visited some fun shops, etc. This am, we headed back in for another try. The screw was ready. My little girl is so brave. Somewhere in the shuffle, we'd lost her security animal - Bernie the Brave. And this hospital would not let me take her into the OR and stay with her til she was asleep - which I've done at St Louis Children's and Chicago Children's. Anyway-she went in with no pre-med (because we no longer do Versed after a bad experience with it) and no mama. In recovery, she cried a bit when I wasn't there immediately when she first opened her eyes, but calmed quickly as they called me down. Here's the miracle part. The 2nd bone of the inner ear (anvil or incus) was malformed. But everything else was good! So the dr used her bone, carved it to the proper shape, and reset everything. It was a standard, simple procedure. It's quite possible for her hearing to get within 10 db of the maximum capacity of the auditory nerve. Since her hearing was so good with the bone conduction aid, we don't think there's significant damage to the nerve. So. what if she could hear as well in this ear as her " good " one??? Imagine if she could localize sounds. That would change her life. Imagine if she could hear pretty well with *both* ears unaided. Imagine if she needed low-powered aids for perfect hearing. We are so excited - but trying not to celebrate too much til she heals and we know for sure. But you know Aubrie - her life has been full of miracles. It'll be about a 3 week healing process. Our hope will be that the scar tissue does what it is supposed to and doesn't pull the bones out of place. What will be interesting is to see how she responds during the healing process. He said she'll be hearing all kinds of weird things - popping, crackling, ringing, her own heart beating, etc - and that it will all come and go. As her hearing improves, that too will come and go until it finally settles. But no incisions to heal. Nothing to worry about really from a day-to-day point of view. She has a sponge wick in her ear that's driving her crazy. It needs to stay til Monday but no biggie. So keep those fingers crossed and prayers coming and whatever else you do for good luck. Aubrie asked me before the surgery, " If the doctor can fix my ear, will it be a miracle? " Well, I sort of think it will. Given all the complications of CHARGE, if this can restore her hearing, we'll be rejoicing! Michele W Aubrie's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2006 Report Share Posted October 20, 2006 PLEEEASE keep us posted!! Yea Aubrie...here's hoping for that miracle! , mommy to Meagan (CHaRgE) and 2 year old twins, and big brother 4 years, married to the best daddy in the world for 9 years! -- FW: Hoping for a miracle Aubrie's ear surgery was scheduled for Tues. We got up at 5am, drove 3 hours, waited til past noon, to find out that the BAHA screw hadn't arrived. So much for UPS guaranteed 9am delivery! So after starving all am, Aubrie got to eat and we took off. We stayed at the hospital's guest house which was absolutely beautiful! My mom had gone with me so we had a fun enough time - found THE pizza joint for the town, visited some fun shops, etc. This am, we headed back in for another try. The screw was ready. My little girl is so brave. Somewhere in the shuffle, we'd lost her security animal - Bernie the Brave. And this hospital would not let me take her into the OR and stay with her til she was asleep - which I've done at St Louis Children's and Chicago Children's. Anyway-she went in with no pre-med (because we no longer do Versed after a bad experience with it) and no mama. In recovery, she cried a bit when I wasn't there immediately when she first opened her eyes, but calmed quickly as they called me down. Here's the miracle part. The 2nd bone of the inner ear (anvil or incus) was malformed. But everything else was good! So the dr used her bone, carved it to the proper shape, and reset everything. It was a standard, simple procedure. It's quite possible for her hearing to get within 10 db of the maximum capacity of the auditory nerve. Since her hearing was so good with the bone conduction aid, we don't think there's significant damage to the nerve. So. what if she could hear as well in this ear as her " good " one??? Imagine if she could localize sounds. That would change her life. Imagine if she could hear pretty well with *both* ears unaided. Imagine if she needed low-powered aids for perfect hearing. We are so excited - but trying not to celebrate too much til she heals and we know for sure. But you know Aubrie - her life has been full of miracles. It'll be about a 3 week healing process. Our hope will be that the scar tissue does what it is supposed to and doesn't pull the bones out of place. What will be interesting is to see how she responds during the healing process. He said she'll be hearing all kinds of weird things - popping, crackling, ringing, her own heart beating, etc - and that it will all come and go. As her hearing improves, that too will come and go until it finally settles. But no incisions to heal. Nothing to worry about really from a day-to-day point of view. She has a sponge wick in her ear that's driving her crazy. It needs to stay til Monday but no biggie. So keep those fingers crossed and prayers coming and whatever else you do for good luck. Aubrie asked me before the surgery, " If the doctor can fix my ear, will it be a miracle? " Well, I sort of think it will. Given all the complications of CHARGE, if this can restore her hearing, we'll be rejoicing! Michele W Aubrie's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2006 Report Share Posted October 20, 2006 Thanks to everyone for the good wishes. I talked to ISD today about what would happen if her hearing improved so much that she didn't qualify to stay there. The principal has known our family since Aubrie's initial EI eval at 10 weeks old and has become a friend. She assured me that Aubrie could stay at least through the end of the school year and they'd help us figure out what she really needs in a placement and how to get it. So now I'm feeling really thankful that she is there right now. Again, timing works out for a reason. She's in the best place to handle the adjustment to whatever new hearing she has and whatever new hearing aids she may use. These folks have been some of our best advocates since the beginning of time so I am confident they'll help us get what she needs when the time comes to move on. I was feeling quite anxious this morning. Post-Operative Stress Disorder, I think :-) Doing lots of looking back, what if's, borrowing trouble from the future, etc. Hopefully, that's passed so I can get on with tomorrow. We have family coming for our big festival weekend and the house is still needing work before it's guest-worthy! Michele W Aubrie's mom 8 yrs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2006 Report Share Posted October 20, 2006 Michele, This is great! I think I am especially happy that you feel comfortable at ISD and that the folks are working so hard to help everyone feel good, get through transitions, etc. RE: POSD‹Yah!!! I can imagine the after shock! And good luck with getting your house ³guest worthy²--what great phrase! pam > Thanks to everyone for the good wishes. I talked to ISD today about what > would happen if her hearing improved so much that she didn't qualify to stay > there. The principal has known our family since Aubrie's initial EI eval at > 10 weeks old and has become a friend. She assured me that Aubrie could stay > at least through the end of the school year and they'd help us figure out > what she really needs in a placement and how to get it. > > > > So now I'm feeling really thankful that she is there right now. Again, > timing works out for a reason. She's in the best place to handle the > adjustment to whatever new hearing she has and whatever new hearing aids she > may use. These folks have been some of our best advocates since the > beginning of time so I am confident they'll help us get what she needs when > the time comes to move on. > > > > I was feeling quite anxious this morning. Post-Operative Stress Disorder, I > think :-) Doing lots of looking back, what if's, borrowing trouble from the > future, etc. Hopefully, that's passed so I can get on with tomorrow. We > have family coming for our big festival weekend and the house is still > needing work before it's guest-worthy! > > > > Michele W > Aubrie's mom 8 yrs > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2006 Report Share Posted October 20, 2006 Everything crossed for you both, give Aubrie a big hug. love les x > > Michele, > This is great! I think I am especially happy that you feel comfortable at > ISD and that the folks are working so hard to help everyone feel good, get > through transitions, etc. > RE: POSD‹Yah!!! I can imagine the after shock! And good luck with getting > your house ³guest worthy²--what great phrase! > pam > > On 10/19/06 11:01 PM, " Michele Westmaas " <momonamission@...<momonamission%40verizon.net>> > wrote: > > > Thanks to everyone for the good wishes. I talked to ISD today about what > > would happen if her hearing improved so much that she didn't qualify to > stay > > there. The principal has known our family since Aubrie's initial EI eval > at > > 10 weeks old and has become a friend. She assured me that Aubrie could > stay > > at least through the end of the school year and they'd help us figure > out > > what she really needs in a placement and how to get it. > > > > > > > > So now I'm feeling really thankful that she is there right now. Again, > > timing works out for a reason. She's in the best place to handle the > > adjustment to whatever new hearing she has and whatever new hearing aids > she > > may use. These folks have been some of our best advocates since the > > beginning of time so I am confident they'll help us get what she needs > when > > the time comes to move on. > > > > > > > > I was feeling quite anxious this morning. Post-Operative Stress > Disorder, I > > think :-) Doing lots of looking back, what if's, borrowing trouble from > the > > future, etc. Hopefully, that's passed so I can get on with tomorrow. We > > have family coming for our big festival weekend and the house is still > > needing work before it's guest-worthy! > > > > > > > > Michele W > > Aubrie's mom 8 yrs > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.