Guest guest Posted May 1, 2001 Report Share Posted May 1, 2001 After two months of waiting, we finally went to the neuropsychologist today. She hasn't given an official dx but she says it looks like Chloe has oral motor apraxia. We will get an official dx in a couple of weeks after she goes over all her records and tests. I'm so glad I found you guys because prior to that she had seen two slp's and both said she was just a late talker. I'm just wondering for those of you with older apraxic kids, how long it takes to see an improvement, how long before she is within normal limits and will no longer need therapy. She is 2.6 y.o. What kind of a battle do I face? Will she ever be 'normal'? Nicky/Mi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2001 Report Share Posted May 7, 2001 Hi Tammy, thanks for your reply. I am in Ferndale, I wish i knew of a support group here but I don't. I had talked to another mom in Michigan who was interested in hooking up. I wonder if there is anyone else. Maybe we could start one. Nick >By the way, I live in Sterling Heights, MI. Are you in the metro detoit > area? Do you know of any support groups in our area? > Thanks so much, > sincerely, > Tammy mother of (5) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2009 Report Share Posted May 19, 2009 Lots of prayers for her recovery process and for success for the prosthesis too! ) Melinda -- })i({ Melinda Kaye Spille })i({Very Proud Wife of Captain " Big Al " Super Blessed Mommy of Trinity, Emelia & TreyRomans 8:28, Ephesians 3:20(\__/) (='.'=) ( " )_( " ) On Tue, May 19, 2009 at 12:57 PM, s <thequeen.christine@...> wrote: Five and a half hours, but we are done...she's still sleeping in the PACU, but the surgeon called up to say there was the ctoma that was visible on the scan, as well as a lining of it in the mastoid. He drilled it all out, and felt that the middle ear was clean enough to try the prosthesis again. All in all, pretty good news. On 5/19/09, Dilynn <annadilynn@...> wrote: hope chloe is doing well! From: Sefton <seftonmichelle@...>cholesteatoma Sent: Tuesday, May 19, 2009 8:24:05 AMSubject: Re: Chloe I'm saying a prayer for Chloe and your family that her surgery goes well and you receive good news! Take care! Chloe had a ct scan done a few weeks ago and, while it looks like there is more ctoma, it is only a small amount in an accessible area, not the nightmare regrowths of the past. No CWD, for now, because there is nothing near the canal wall or any other location that would benefit from the CWD. We had thought she would possibly need this, so it will be good if he can get it all out without the larger surgery. Since it looks so good, she will likely get a prosthesis, as well. Maybe no more hearing aid, although that is working out well. Surgery is May 19, and she is actually a little anxious obout it, that's the first time in 11, now 12 surgeries, but she is doing a great job of expressing what she needs, and I am just so proud of her. There is a good chance that this will be the last surgery for a long time. christine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2009 Report Share Posted May 20, 2009 Her cholesteatoma was a large congenital one originally, and was hidden in some very small areas, so it has been difficult to get rid of it all. Part of the reason for so many surgeries was a bone infection in the mastoid last year that caused a rapid regrowth of the ctoma, and also required surgery to clean out the infection. Hers has just been unusually aggressive and stubborn (like its owner). We have a great surgeon, and I am very confident in his abilities and surgical plans. He is hopeful that this will be the last for a long time, as things certainly look much better than they have in quite a while. Still, in spite of it, she has managed to avoid some of the horrible long term and permanent potential complications. Her nerves are intact, the bone near the brain and large blood vessels is intact, and she has not had any trouble with the facial nerve, so we feel very blessed. She is doing very well this morning, and we'll be going home in a little bit. On 5/20/09, Melinda Spille <melindakaye@...> wrote: Lots of prayers for her recovery process and for success for the prosthesis too! ) Melinda -- })i({ Melinda Kaye Spille })i({Very Proud Wife of Captain " Big Al " Super Blessed Mommy of Trinity, Emelia & TreyRomans 8:28, Ephesians 3:20(\__/) (='.'=) ( " )_( " ) On Tue, May 19, 2009 at 12:57 PM, s <thequeen.christine@...> wrote: Five and a half hours, but we are done...she's still sleeping in the PACU, but the surgeon called up to say there was the ctoma that was visible on the scan, as well as a lining of it in the mastoid. He drilled it all out, and felt that the middle ear was clean enough to try the prosthesis again. All in all, pretty good news. On 5/19/09, Dilynn <annadilynn@...> wrote: hope chloe is doing well! From: Sefton <seftonmichelle@...> cholesteatoma Sent: Tuesday, May 19, 2009 8:24:05 AM Subject: Re: Chloe I'm saying a prayer for Chloe and your family that her surgery goes well and you receive good news! Take care! Chloe had a ct scan done a few weeks ago and, while it looks like there is more ctoma, it is only a small amount in an accessible area, not the nightmare regrowths of the past. No CWD, for now, because there is nothing near the canal wall or any other location that would benefit from the CWD. We had thought she would possibly need this, so it will be good if he can get it all out without the larger surgery. Since it looks so good, she will likely get a prosthesis, as well. Maybe no more hearing aid, although that is working out well. Surgery is May 19, and she is actually a little anxious obout it, that's the first time in 11, now 12 surgeries, but she is doing a great job of expressing what she needs, and I am just so proud of her. There is a good chance that this will be the last surgery for a long time. christine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2009 Report Share Posted May 20, 2009 Way to go Chloe! What a trooper! Matt s wrote: > > > Her cholesteatoma was a large congenital one originally, and was > hidden in some very small areas, so it has been difficult to get rid > of it all. Part of the reason for so many surgeries was a bone > infection in the mastoid last year that caused a rapid regrowth of the > ctoma, and also required surgery to clean out the infection. Hers has > just been unusually aggressive and stubborn (like its owner). We have > a great surgeon, and I am very confident in his abilities and surgical > plans. He is hopeful that this will be the last for a long time, as > things certainly look much better than they have in quite a while. > > Still, in spite of it, she has managed to avoid some of the horrible > long term and permanent potential complications. Her nerves are > intact, the bone near the brain and large blood vessels is intact, and > she has not had any trouble with the facial nerve, so we feel very > blessed. > > She is doing very well this morning, and we'll be going home in a > little bit. > > > > On 5/20/09, *Melinda Spille* <melindakaye@... > <mailto:melindakaye@...>> wrote: > > > > Lots of prayers for her recovery process and for success for the > prosthesis too! > > ) Melinda > > > -- > })i({ Melinda Kaye Spille })i({ > Very Proud Wife of Captain " Big Al " > Super Blessed Mommy of Trinity, Emelia & Trey > Romans 8:28, Ephesians 3:20 > (\__/) > (='.'=) > ( " )_( " ) > > > On Tue, May 19, 2009 at 12:57 PM, s > <thequeen.christine@... > <mailto:thequeen.christine@...>> wrote: > > > > Five and a half hours, but we are done...she's still sleeping > in the PACU, but the surgeon called up to say there was the > ctoma that was visible on the scan, as well as a lining of it > in the mastoid. He drilled it all out, and felt that the > middle ear was clean enough to try the prosthesis again. All > in all, pretty good news. > > > > On 5/19/09, * Dilynn* <annadilynn@... > <mailto:annadilynn@...>> wrote: > > > > hope chloe is doing well! > > > ------------------------------------------------------------------------ > *From:* Sefton <seftonmichelle@... > <mailto:seftonmichelle@...>> > *To:* cholesteatoma > <mailto:cholesteatoma > > *Sent:* Tuesday, May 19, 2009 8:24:05 AM > *Subject:* Re: Chloe > > I'm saying a prayer for Chloe and your family that her > surgery goes well and you receive good news! > > Take care! > > > > > > > Chloe had a ct scan done a few weeks ago and, > while it looks like there is more ctoma, it is > only a small amount in an accessible area, not > the nightmare regrowths of the past. No CWD, > for now, because there is nothing near the > canal wall or any other location that would > benefit from the CWD. We had thought she would > possibly need this, so it will be good if he > can get it all out without the larger surgery. > > Since it looks so good, she will likely get a > prosthesis, as well. Maybe no more hearing > aid, although that is working out well. > > Surgery is May 19, and she is actually a > little anxious obout it, that's the first time > in 11, now 12 surgeries, but she is doing a > great job of expressing what she needs, and I > am just so proud of her. There is a good > chance that this will be the last surgery for > a long time. > > christine > > > > > > > > > > > > > > > > > > > > > > -- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2009 Report Share Posted May 20, 2009 As awful as these cholesteatomas can be I am extremely happy that she has been able to dodge the horrible long term and permanent potential complications (they can be life altering). I wish her a speedy recovery - I am sure you have had temendous stress from worrying about your Chloe - she will probably be recovered before your nerves settle. Take Care! From: s <thequeen.christine@...>cholesteatoma Sent: Wednesday, May 20, 2009 7:48:58 AMSubject: Re: Chloe Her cholesteatoma was a large congenital one originally, and was hidden in some very small areas, so it has been difficult to get rid of it all. Part of the reason for so many surgeries was a bone infection in the mastoid last year that caused a rapid regrowth of the ctoma, and also required surgery to clean out the infection. Hers has just been unusually aggressive and stubborn (like its owner). We have a great surgeon, and I am very confident in his abilities and surgical plans. He is hopeful that this will be the last for a long time, as things certainly look much better than they have in quite a while. Still, in spite of it, she has managed to avoid some of the horrible long term and permanent potential complications. Her nerves are intact, the bone near the brain and large blood vessels is intact, and she has not had any trouble with the facial nerve, so we feel very blessed. She is doing very well this morning, and we'll be going home in a little bit. On 5/20/09, Melinda Spille <melindakaye@ gmail.com> wrote: Lots of prayers for her recovery process and for success for the prosthesis too! ) Melinda -- })i({ Melinda Kaye Spille })i({Very Proud Wife of Captain "Big Al"Super Blessed Mommy of Trinity, Emelia & TreyRomans 8:28, Ephesians 3:20(\__/) (='.'=) (")_(") On Tue, May 19, 2009 at 12:57 PM, s <thequeen.christine@ gmail.com> wrote: Five and a half hours, but we are done...she's still sleeping in the PACU, but the surgeon called up to say there was the ctoma that was visible on the scan, as well as a lining of it in the mastoid. He drilled it all out, and felt that the middle ear was clean enough to try the prosthesis again. All in all, pretty good news. On 5/19/09, Dilynn <annadilynn (DOT) com> wrote: hope chloe is doing well! From: Sefton <seftonmichelle>cholesteatomaSent: Tuesday, May 19, 2009 8:24:05 AMSubject: Re: Chloe I'm saying a prayer for Chloe and your family that her surgery goes well and you receive good news! Take care! Chloe had a ct scan done a few weeks ago and, while it looks like there is more ctoma, it is only a small amount in an accessible area, not the nightmare regrowths of the past. No CWD, for now, because there is nothing near the canal wall or any other location that would benefit from the CWD. We had thought she would possibly need this, so it will be good if he can get it all out without the larger surgery. Since it looks so good, she will likely get a prosthesis, as well. Maybe no more hearing aid, although that is working out well. Surgery is May 19, and she is actually a little anxious obout it, that's the first time in 11, now 12 surgeries, but she is doing a great job of expressing what she needs, and I am just so proud of her. There is a good chance that this will be the last surgery for a long time.christine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2009 Report Share Posted May 20, 2009 > > > >> > >> > >> Chloe had a ct scan done a few weeks ago and, while it looks like there is > >> more ctoma, it is only a small amount in an accessible area, not the > >> nightmare regrowths of the past. No CWD, for now, because there is nothing > >> near the canal wall or any other location that would benefit from the CWD. > >> We had thought she would possibly need this, so it will be good if he can > >> get it all out without the larger surgery. > >> > >> Since it looks so good, she will likely get a prosthesis, as well. Maybe > >> no more hearing aid, although that is working out well. > >> > >> Surgery is May 19, and she is actually a little anxious obout it, that's > >> the first time in 11, now 12 surgeries, but she is doing a great job of > >> expressing what she needs, and I am just so proud of her. There is a good > >> chance that this will be the last surgery for a long time. > >> > >> christine > >> > >> > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2009 Report Share Posted May 20, 2009 > > > >> > >> > >> Chloe had a ct scan done a few weeks ago and, while it looks like there is > >> more ctoma, it is only a small amount in an accessible area, not the > >> nightmare regrowths of the past. No CWD, for now, because there is nothing > >> near the canal wall or any other location that would benefit from the CWD. > >> We had thought she would possibly need this, so it will be good if he can > >> get it all out without the larger surgery. > >> > >> Since it looks so good, she will likely get a prosthesis, as well. Maybe > >> no more hearing aid, although that is working out well. > >> > >> Surgery is May 19, and she is actually a little anxious obout it, that's > >> the first time in 11, now 12 surgeries, but she is doing a great job of > >> expressing what she needs, and I am just so proud of her. There is a good > >> chance that this will be the last surgery for a long time. > >> > >> christine > >> > >> > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2009 Report Share Posted November 30, 2009 Love that baby's heart! It makes you wonder how someone so little could be so brave and not complain! My ENT said I was as bad as a little kid cause I didn't want to pop my ears and Cloe has had reacurring infection and C-toma. I just could not imagine the kind of strength that must entail. I will definantly keep my fingers crossed and the prayers going out. Malerie From: s <thequeen.christine@...>cholesteatoma <cholesteatoma >Sent: Mon, November 30, 2009 12:30:11 AMSubject: chloe Hey everyone!Chloe has had an infection for a few weeks. We have tried floxin dropsand now ciprodex for the last week with no improvement. I would be alittle naive if I didn't suspect that there is something new going on,since she has had so much trouble with recurrance. Even the lastsurgery in May had new growth. So, trying not to panic, but this feelstoo familiar. And of course, it's Christmas again...I guess there isno good time for this!Also, has anyone heard of a PE tube breaking? She has the long termkind that stay in 3-5 years, and they are about a year and a half old.Anyway, I think a piece of it came out of the infected ear onSaturday, which I find a little troubling, as I have never heard ofthis happening, and I actually did think I had heard it all now! Itstill seems to be draining. Any ideas?Thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2009 Report Share Posted December 1, 2009 What kind of infection did she have? We are headed back to the surgeons today for a check up. 2 weeks ago he had smellt drainage and found out the skin inside his ear was inflammed (I think)It was a nasty brown and the dr cauterized it. I'm hoping that is the extent of it but I am worried because his hearing has been going downhill. He isn't hearing as well and is hearing things wrong alot lately. I hope Chloe doesn't have a reoccurence, heavens knows that little girl has gone through so much. I don't have alot of experience with tubes. Sebastian had one for a few months and that is when they found the c-toma. > > Hey everyone! > Chloe has had an infection for a few weeks. We have tried floxin drops > and now ciprodex for the last week with no improvement. I would be a > little naive if I didn't suspect that there is something new going on, > since she has had so much trouble with recurrance. Even the last > surgery in May had new growth. So, trying not to panic, but this feels > too familiar. And of course, it's Christmas again...I guess there is > no good time for this! > > Also, has anyone heard of a PE tube breaking? She has the long term > kind that stay in 3-5 years, and they are about a year and a half old. > Anyway, I think a piece of it came out of the infected ear on > Saturday, which I find a little troubling, as I have never heard of > this happening, and I actually did think I had heard it all now! It > still seems to be draining. Any ideas? > > Thanks! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2009 Report Share Posted December 1, 2009 It looks like it is a candida or yeast infection. The culture did not show up right away, so it took a week before we knew that. She is using gross thick drops, and I hope to see some improvement soon. Good luck to you! On 12/1/09, bethsdragon <bethsdragon@...> wrote: What kind of infection did she have? We are headed back to the surgeons today for a check up. 2 weeks ago he had smellt drainage and found out the skin inside his ear was inflammed (I think)It was a nasty brown and the dr cauterized it. I'm hoping that is the extent of it but I am worried because his hearing has been going downhill. He isn't hearing as well and is hearing things wrong alot lately. I hope Chloe doesn't have a reoccurence, heavens knows that little girl has gone through so much. :)I don't have alot of experience with tubes. Sebastian had one for a few months and that is when they found the c-toma. >> Hey everyone!> Chloe has had an infection for a few weeks. We have tried floxin drops > and now ciprodex for the last week with no improvement. I would be a> little naive if I didn't suspect that there is something new going on,> since she has had so much trouble with recurrance. Even the last > surgery in May had new growth. So, trying not to panic, but this feels> too familiar. And of course, it's Christmas again...I guess there is> no good time for this!>> Also, has anyone heard of a PE tube breaking? She has the long term > kind that stay in 3-5 years, and they are about a year and a half old.> Anyway, I think a piece of it came out of the infected ear on> Saturday, which I find a little troubling, as I have never heard of > this happening, and I actually did think I had heard it all now! It> still seems to be draining. Any ideas?>> Thanks!> >------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2009 Report Share Posted December 2, 2009 Good Luck! He was clear as of yesterday. We just moved his cleaning from 6 months to 3 months. I hope you have as simple a fix!! > > > > > > Hey everyone! > > > Chloe has had an infection for a few weeks. We have tried floxin drops > > > and now ciprodex for the last week with no improvement. I would be a > > > little naive if I didn't suspect that there is something new going on, > > > since she has had so much trouble with recurrance. Even the last > > > surgery in May had new growth. So, trying not to panic, but this feels > > > too familiar. And of course, it's Christmas again...I guess there is > > > no good time for this! > > > > > > Also, has anyone heard of a PE tube breaking? She has the long term > > > kind that stay in 3-5 years, and they are about a year and a half old. > > > Anyway, I think a piece of it came out of the infected ear on > > > Saturday, which I find a little troubling, as I have never heard of > > > this happening, and I actually did think I had heard it all now! It > > > still seems to be draining. Any ideas? > > > > > > Thanks! > > > > > > > > > > > > > > > > ------------------------------------ > > > > Quote Link to comment Share on other sites More sharing options...
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