I am so annoyed. After mentally preparing for Lord knows how long and taking all four kids to get her medically cleared yesterday and getting a flat tire on the way home with all the kids on a record breaking rainy day....... I get a call to say we were bumped from the OR schedule because it was over booked. How on earth can they bump a baby? It just pisses me off. Now they are hoping to get her on for next Thursday. I have to try and keep her away from people for another week. Avoid germs. Not an easy feat with three three year olds in preschool
My Mom leaves on Monday for vacation for 2 weeks so she won't be around to help like we planned for the time I was away. I just messes up the whole plan.
Oh, well, life goes on. I am hoping it we are healthy, ready and not overbooked for next week.
Thanks for all the well wishes. I really appreciate it. You have no idea.
Wednesday, March 31, 2010
Monday, March 29, 2010
Updates andthoughts
We have been a busy family lately. Lots of fun events starting with all the St Patrick's Day parades and festivities. It is really a wonderful time of year for our family. THe kids made a local paper again. We seem to get noticed for some reason. (I wonder why???)
We have also seen the Easter Bunny three times already!
No word yet from our school district regarding Cormac for next year. I have been waiting for about two weeks to hear back but nothing yet. We are covered until June 20th so we have some time.
Calleigh is having her lip repair surgery on Thursday April 1st. So, if you have some time for a few extra prayers, we could use them. It's weird because I know I have to fix her lip but in a way I feel like I am changing her face. It's just her, you know what I mean? When she smiles her whole face lights up and her lip is just the cutest thing I ever saw. I guess since I am her mom it doesn't phase me in the least. But I know her "new" smile will be just as beautiful and it will really help her in the long run.
Calleigh was also given another diagnosis last week. Duane Syndrome. Really? If any of you know what it is I will be pretty impressed. Just another strange anomoly to add to her medical history. I brought her to the pediatric ophthalmologist becasue I thougt her left eye seemed to turn in. Sometimes. Not always. It was not consistent. Well, her left eye is just dandy. Her right eye has Duane Syndrome. What does it mean? Well, she can see and has perfect vision. She physically cannot move her right eye to the right. So, right now, look straight ahead. Now, look to the right with JUST your eyes....... Ok, so your left eye moves toward your nose and your right eyes moves toward the outside of your right eye. Well, when Calleigh does this ONLY her left eye moves. Her right eye stays straight. It gives the appearance that her left eye is turning in but actually her right is is just staying straight. Does that make sense??? There is no cure and nothing they can do about it. It's not a muscle problem. The nerve that controls the muscle that moves her eye to the right is either misfiring or not firing at all.
I don't really know what to say about it. Seems like everytime something good happens (one of the holes in her heart has closed) we get some other odd diagnosis. She continues to amaze me with how damn happy she is all the time. She laughs and smiles all the time. She has made HUGE advances in the last two weeks with her motor skills. I think since we finally got her acid reflux under control she is eating more and feeling better. We have really been working with her to improve as well.
She can't sit up yet for a long time but has learned to put her palms down to catch herself. She is passing toys hand to hand and really playing with things now. I knew she was delayed because of her surgeries and not having the opportunity to be allowed to lay on her belly for almost 8 months because of her colostomy bag. But let me tell you since she has been spending time on her tummy and getting the opportunity to do things she is really flourishing. I know she will catch up before we know it. We just have to get past Thursday's surgery. Let's pray it's the last one for my lil angel.
The boys are all maniacs. Just wild. They love school. They love their play group and their play dates. They are going to be starting tennis and soccer, I think.
Language continues to develop for all three.
Here's a good story for you all to enjoy:
A speech pathologist came over the house to evaluate Calleigh because of her lip. The triplets were home and in strolls Cormac. The speech pathologist was having an entire conversation with him and I say to her "you know he's deaf, right?" She looked at me like I had 5 heads! She said "I am speechless, shocked and amazed" "He has perfect tone, pitch everything" Cormac's blonde curls cover his implants sometimes and you can't see them. I was so proud of him at that moment. I said "Show the lady you implants" He gladly pulled his hair back and showed her and says "these are my cochlear implants cause I'm deaf"!
That's all for now folks.
We have also seen the Easter Bunny three times already!
No word yet from our school district regarding Cormac for next year. I have been waiting for about two weeks to hear back but nothing yet. We are covered until June 20th so we have some time.
Calleigh is having her lip repair surgery on Thursday April 1st. So, if you have some time for a few extra prayers, we could use them. It's weird because I know I have to fix her lip but in a way I feel like I am changing her face. It's just her, you know what I mean? When she smiles her whole face lights up and her lip is just the cutest thing I ever saw. I guess since I am her mom it doesn't phase me in the least. But I know her "new" smile will be just as beautiful and it will really help her in the long run.
Calleigh was also given another diagnosis last week. Duane Syndrome. Really? If any of you know what it is I will be pretty impressed. Just another strange anomoly to add to her medical history. I brought her to the pediatric ophthalmologist becasue I thougt her left eye seemed to turn in. Sometimes. Not always. It was not consistent. Well, her left eye is just dandy. Her right eye has Duane Syndrome. What does it mean? Well, she can see and has perfect vision. She physically cannot move her right eye to the right. So, right now, look straight ahead. Now, look to the right with JUST your eyes....... Ok, so your left eye moves toward your nose and your right eyes moves toward the outside of your right eye. Well, when Calleigh does this ONLY her left eye moves. Her right eye stays straight. It gives the appearance that her left eye is turning in but actually her right is is just staying straight. Does that make sense??? There is no cure and nothing they can do about it. It's not a muscle problem. The nerve that controls the muscle that moves her eye to the right is either misfiring or not firing at all.
I don't really know what to say about it. Seems like everytime something good happens (one of the holes in her heart has closed) we get some other odd diagnosis. She continues to amaze me with how damn happy she is all the time. She laughs and smiles all the time. She has made HUGE advances in the last two weeks with her motor skills. I think since we finally got her acid reflux under control she is eating more and feeling better. We have really been working with her to improve as well.
She can't sit up yet for a long time but has learned to put her palms down to catch herself. She is passing toys hand to hand and really playing with things now. I knew she was delayed because of her surgeries and not having the opportunity to be allowed to lay on her belly for almost 8 months because of her colostomy bag. But let me tell you since she has been spending time on her tummy and getting the opportunity to do things she is really flourishing. I know she will catch up before we know it. We just have to get past Thursday's surgery. Let's pray it's the last one for my lil angel.
The boys are all maniacs. Just wild. They love school. They love their play group and their play dates. They are going to be starting tennis and soccer, I think.
Language continues to develop for all three.
Here's a good story for you all to enjoy:
A speech pathologist came over the house to evaluate Calleigh because of her lip. The triplets were home and in strolls Cormac. The speech pathologist was having an entire conversation with him and I say to her "you know he's deaf, right?" She looked at me like I had 5 heads! She said "I am speechless, shocked and amazed" "He has perfect tone, pitch everything" Cormac's blonde curls cover his implants sometimes and you can't see them. I was so proud of him at that moment. I said "Show the lady you implants" He gladly pulled his hair back and showed her and says "these are my cochlear implants cause I'm deaf"!
That's all for now folks.
Sunday, March 21, 2010
It's Official! I am a BEA Mentor.
The BEA is the Bionic Ear Assocation through Advanced Bionics. Advanced Bionics, for those of you that don't know, is the brand of implant Cormac uses. They have done so much for our family. When it came time to make a decision on which brand to chose for Cormac we went with Advanced Bionics because Frank and I felt their technology was the best.
Cormac was lucky enough to be enrolled in a bilateral study when it was his time to be implanted. This is why Cormac was able to receive bilateral simultaneous implants. Most kids don't get two at once. We were truly blessed.
I remember being told Cormac was deaf and feeling so lost in the world. I didn't even know at the time two hearing people could have a deaf child. I didn't even know what cochlear implant was. There was so much we didn't know. Now, three years later, well I have become very educated on implants, AV therapy, rights of children with hearing loss. You know, everything I ever need to know to make sure Cormac succeeds and gets all that he needs and is entitled to.
I think becoming a mentor for the BEA is just one small way to give back. If by talking to one Mom or Dad and letting them feel like things will be OK I will have helped. I remember feeling totally helpless when Cormac was a baby. I cried so many times over what his future would be. We know now that anything is possible in his future. Nothing will hold him back. There is nothing he cannot accomplish.
We owe all of this to the amazing technology that exists in the world we live in. Cochlear implants are amazing devices that give people not only the ability to hear but to also have their own voice. Cormac's voice is the sweetest voice I have ever heard. The things he says to me on a daily basis are miracles when it comes down to it. If he was born in a different generation he would not be singing songs all day. He would not be leading his class performances in his mainstream preschool.
We are forever thankful for Advanced Bionics and all the wonderfully, smart people who ever even thought it was possible to let deaf people hear....
If you want to view my profile click here
Cormac was lucky enough to be enrolled in a bilateral study when it was his time to be implanted. This is why Cormac was able to receive bilateral simultaneous implants. Most kids don't get two at once. We were truly blessed.
I remember being told Cormac was deaf and feeling so lost in the world. I didn't even know at the time two hearing people could have a deaf child. I didn't even know what cochlear implant was. There was so much we didn't know. Now, three years later, well I have become very educated on implants, AV therapy, rights of children with hearing loss. You know, everything I ever need to know to make sure Cormac succeeds and gets all that he needs and is entitled to.
I think becoming a mentor for the BEA is just one small way to give back. If by talking to one Mom or Dad and letting them feel like things will be OK I will have helped. I remember feeling totally helpless when Cormac was a baby. I cried so many times over what his future would be. We know now that anything is possible in his future. Nothing will hold him back. There is nothing he cannot accomplish.
We owe all of this to the amazing technology that exists in the world we live in. Cochlear implants are amazing devices that give people not only the ability to hear but to also have their own voice. Cormac's voice is the sweetest voice I have ever heard. The things he says to me on a daily basis are miracles when it comes down to it. If he was born in a different generation he would not be singing songs all day. He would not be leading his class performances in his mainstream preschool.
We are forever thankful for Advanced Bionics and all the wonderfully, smart people who ever even thought it was possible to let deaf people hear....
If you want to view my profile click here
Friday, March 12, 2010
Family Fun Night
We are so looking forward to Family Fun Night at Summit Speech School. We will get to see lots of friends we haven't seen in a while. Cormac has been naming all of his old "peeps" from school. He is still pretty sure he will be terrified of the clown. I am going to agreew with him on that one! It's also a great time to talk to other parents. This year with Cormac aging out of intervention has left me a little lost for my loving group of friends at Summit Speech School. Yes, Cormac still receives itinerant services from SUmmit and WE LOVE IT but it's not the same as going there each week and cathing up with fellow moms and dads who really understand where you are coming from on a daily basis!
Hope to see lots of you there!
Jill, I got your message and I am so excited you will be there tonight. Sorry I couldn't call you back. Making phone calls with 4 kids under 3 just isn't easy these days!!!
Hope to see lots of you there!
Jill, I got your message and I am so excited you will be there tonight. Sorry I couldn't call you back. Making phone calls with 4 kids under 3 just isn't easy these days!!!
Wednesday, March 10, 2010
Interesting Article
Kids with cochlear implants rank quality of life equal to normally hearing peers
ANIWednesday, February 24, 2010 22:00 IST Email
WASHINGTON: A new American research suggests that children with cochlear implants (CI) have the same quality of life (QOL) as their normally hearing (NH) peers.
A cochlear implant is an electronic device, which restores partial hearing to the deaf. Surgery is performed to implant it in the inner ear and then a device worn outside the ear activates it. The device does not make sound louder or clearer but bypasses damaged parts of the auditory system and directly stimulates the hearing nerve, enabling the deaf or severely hard of hearing individuals to receive sound.
Previous studies have indicated that deaf children feel less socially accepted, experience more difficulty in making friends, and show greater adjustment problems than their hearing peers.
However, the findings of the new research, a cross-sectional study of 88 families with CI children from 16 U.S. states, differ from traditional conclusions.
The study team used a generic QOL questionnaire. The subjects were divided by age of the child when they filled out the questionnaire - an 8-11-year-old group and a 12-16-year-old group.
Both parents and children filled out the QOL questionnaire, with the parents assessing their child. The study group was then compared to a control group of 1,501 NH children in fourth and eighth grades.
Results of the questionnaire showed that overall QOL did not differ between CI and NH groups. However, examination of individual subscales disclosed that 8-11-year-old CI children rate their QOL with family less positively than their NH peers.
Younger CI recipients rated overall QOL more positively than the older 12-16-year-old CI group. But, the authors believe that this could be a reflection of standard adolescent behaviour.
By and large QOL showed a significant inverse association with age at implantation, and a significant positive correlation with duration of CI use in the 12-16-year-old group.
The authors say that even though prior studies have appraised QOL in CI children, this study adds additional perspective to the literature, as it combines assessments by the actual CI recipients and parents, and it maps the results in context with NH children.
The research also demonstrates that parents proved to be reliable reporters for their children in areas where they could observe and participate.
The authors write: "For profoundly deaf children who regularly use a cochlear implant, feelings about life overall are no better or worse than their hearing peers. These findings indicate that cochlear implantation has a positive effect on certain psycho-social domains."
The study has appeared in the February 2010 issue of Otolaryngology - Head and Neck Surgery
I think I have to agree with this article. Our house is sort of a daily study in the lives of children the same age, with one who happens to be deaf. His quality of life, in my opinion, is no different than that of his brothers. I think if you asked him he would feel the same. He is just one of the kids. No different than anyone else. I hope as Cormac grows older he always feels so comfortable in his own skin. Just yesterday a teacher at his school (not his teacher) approached me to tell me she has never seen a child with such a "zest for life" who wanted to learn everything and who clearly is "running the show" and "the leader of the pack". (all ina good way) Nothing could make a mom feel better.
Melissa, thanks for your comment on the lip reading post. I agree, Cormac is part of a new generation of deaf kids. They are paving the way for future children just like you did many years ago. I think it's hard for different generations to fully comprehend these kids don't actually need any further assistance than their implants. Truly, an amazing experience I myself find hard to believe at times BUT we are living it every day.
ANIWednesday, February 24, 2010 22:00 IST Email
WASHINGTON: A new American research suggests that children with cochlear implants (CI) have the same quality of life (QOL) as their normally hearing (NH) peers.
A cochlear implant is an electronic device, which restores partial hearing to the deaf. Surgery is performed to implant it in the inner ear and then a device worn outside the ear activates it. The device does not make sound louder or clearer but bypasses damaged parts of the auditory system and directly stimulates the hearing nerve, enabling the deaf or severely hard of hearing individuals to receive sound.
Previous studies have indicated that deaf children feel less socially accepted, experience more difficulty in making friends, and show greater adjustment problems than their hearing peers.
However, the findings of the new research, a cross-sectional study of 88 families with CI children from 16 U.S. states, differ from traditional conclusions.
The study team used a generic QOL questionnaire. The subjects were divided by age of the child when they filled out the questionnaire - an 8-11-year-old group and a 12-16-year-old group.
Both parents and children filled out the QOL questionnaire, with the parents assessing their child. The study group was then compared to a control group of 1,501 NH children in fourth and eighth grades.
Results of the questionnaire showed that overall QOL did not differ between CI and NH groups. However, examination of individual subscales disclosed that 8-11-year-old CI children rate their QOL with family less positively than their NH peers.
Younger CI recipients rated overall QOL more positively than the older 12-16-year-old CI group. But, the authors believe that this could be a reflection of standard adolescent behaviour.
By and large QOL showed a significant inverse association with age at implantation, and a significant positive correlation with duration of CI use in the 12-16-year-old group.
The authors say that even though prior studies have appraised QOL in CI children, this study adds additional perspective to the literature, as it combines assessments by the actual CI recipients and parents, and it maps the results in context with NH children.
The research also demonstrates that parents proved to be reliable reporters for their children in areas where they could observe and participate.
The authors write: "For profoundly deaf children who regularly use a cochlear implant, feelings about life overall are no better or worse than their hearing peers. These findings indicate that cochlear implantation has a positive effect on certain psycho-social domains."
The study has appeared in the February 2010 issue of Otolaryngology - Head and Neck Surgery
I think I have to agree with this article. Our house is sort of a daily study in the lives of children the same age, with one who happens to be deaf. His quality of life, in my opinion, is no different than that of his brothers. I think if you asked him he would feel the same. He is just one of the kids. No different than anyone else. I hope as Cormac grows older he always feels so comfortable in his own skin. Just yesterday a teacher at his school (not his teacher) approached me to tell me she has never seen a child with such a "zest for life" who wanted to learn everything and who clearly is "running the show" and "the leader of the pack". (all ina good way) Nothing could make a mom feel better.
Melissa, thanks for your comment on the lip reading post. I agree, Cormac is part of a new generation of deaf kids. They are paving the way for future children just like you did many years ago. I think it's hard for different generations to fully comprehend these kids don't actually need any further assistance than their implants. Truly, an amazing experience I myself find hard to believe at times BUT we are living it every day.
Tuesday, March 9, 2010
Response to Lip Reading Post
Anonymous wrote:
If he is "hearing" with his cochlear, you don't need to cover your lips. Do hearing people do that with their hearing children?
If not, then there's no need to. If he really struggle to listen to the point that you have to cover your mouth to teach him, Just stick with sign language. People in my generation of hearing aids did the same thing to us. They covered their lips so we could be trained to use our hearing aids. It worked in the short-term if we are really focus on it, but in the long term, it doesn't work.
Cormac in no way needs to lip read. It;s not like we walk around with our mouths covered. But when we are testing him we like to make sure he isn't "cheating" since he is such a good lip reader. Parents of those with hearing children don't have the same issues. They KNOW their children are using their hearing because a hearing child doesnt lip read. He uses his hearing to have conversations. He uses his hearing alone in a mainstream preschool and doesn't miss a trick.
Barb:
I have heard of cued speech but haven't looked into to much. It sounds like an option. We so rarely need any assistance in communicating it hasn't come up to often.
Melanie:
Venemous... I know. I honestly can't believe the things he remembers. He is like a sponge. Your Peas sounds just like him :)
If he is "hearing" with his cochlear, you don't need to cover your lips. Do hearing people do that with their hearing children?
If not, then there's no need to. If he really struggle to listen to the point that you have to cover your mouth to teach him, Just stick with sign language. People in my generation of hearing aids did the same thing to us. They covered their lips so we could be trained to use our hearing aids. It worked in the short-term if we are really focus on it, but in the long term, it doesn't work.
Cormac in no way needs to lip read. It;s not like we walk around with our mouths covered. But when we are testing him we like to make sure he isn't "cheating" since he is such a good lip reader. Parents of those with hearing children don't have the same issues. They KNOW their children are using their hearing because a hearing child doesnt lip read. He uses his hearing to have conversations. He uses his hearing alone in a mainstream preschool and doesn't miss a trick.
Barb:
I have heard of cued speech but haven't looked into to much. It sounds like an option. We so rarely need any assistance in communicating it hasn't come up to often.
Melanie:
Venemous... I know. I honestly can't believe the things he remembers. He is like a sponge. Your Peas sounds just like him :)
Monday, March 1, 2010
Lip Reading
When Cormac was implanted we chose for him to be educated in an oral only school. The school he received services from birth to three years old did not teach sign language or any other form of communication besides listening and speaking like his typical hearing peers. That said, Cormac knew tons of signs before he was implanted and still remembers them. I would say he knows about 200 or more signs. When he first started talking he would sign the word as he tried to say it. I thought it was so helpful during this process. Colin and Ciaran also did sign before they were verbal. It was so cute to see them all signing "more" or "cookie". I noticed as Cormac became more verbal he started dropping his signs because he just didn't need them any longer. I thought once he was really verbal we could always go back and learn more since he is still deaf and without his implants I feel like I need a way to communicate with him. We still want to learn but I have found Cormac has an amazing ability to lip read. I mean you can have an entire conversation with him when he is not wearing his implants and he answers you back. I don't understand how on Earth people acquire this skill. There are times in the bath tub Frank will say "he can't be deaf" knowing full well he is deaf.
Now, for three years we made sure he didn't lip read when we talked to him. We wanted to make sure he used his hearing and didn't "cheat" by lip reading. We would cover our mouths when we spoke so he couldn't see our lips but he still can do it. I now he doesn't rely on it but it sure comes in handy. When we are in very noisy situations he can still understand me (Ciaran and Colin wont because if it's too loud and they can't hear me they can't lip read). When he is in water it is awesome.
I will never understand this ability. I would love to hear from others about their experiences with their children or with their own lip reading in life. How do you do it??? This kid never gets it wrong.
On another note, we are heading into NYC for a mapping tomorrow. Just in time because the last few days Cormac has been acting like he isn't hearing as well as normal. Lots of "what did you say?" Not sure what is going on but with some fine tuning tomorrow I have full confidence he will be back to his old self. I took the opportunity to work with him on his confidence to ask others to repeat themselves if he misses something. This is especially important in the class room and will be more important as he gets older. He needs to be able to advocate for himself and never feel embarrassed to ask someone to repeat themselves. So, I taught him to say "excuse me, I didn't hear you. Can you please repeat that again?" Seems like it's working because he said it to me quite a few times this week.
Let's see as for language?? What's Cormac's latest? He told me Black widow spiders are venomous. I asked what does venomous mean? He says "It's poison, Mommy.". He is also telling everyone about Tornadoes. He says "they are funnel clouds" . My sister watched the triplets this morning for a while so I could take Calleigh to the dr and she took them to a class at the Community Center. She said he was basically running the class. They asked them to pretend to be their favorite animal. Cormac's was a penguin and a frog. He told them frogs eat insects with their tongues. SHe basically said he didn't stop talking the entire time right along with the other two nuts I am raising.
But the best story of the week....
Cormac goes into NYC every three months for a mapping. I take him alone because it's just easier. He has referred to NYC as "my city" for as long as I can remember. Whenever we see the skyline he says "look at my city". Ciaran and Colin even refer to it as "cormac's city". He asked if we could bring his brothers and sister with him tomorrow. I said sure. Then he said to Ciaran and Colin "Hey, Ciaran and Colin, do you know why I want to bring you to "my city"? Because I just love you guys!" It was one of the sweetest moments ever. The look on his face was so sincere it made me cry. He is beyond excited to go tomorrow.
Now, for three years we made sure he didn't lip read when we talked to him. We wanted to make sure he used his hearing and didn't "cheat" by lip reading. We would cover our mouths when we spoke so he couldn't see our lips but he still can do it. I now he doesn't rely on it but it sure comes in handy. When we are in very noisy situations he can still understand me (Ciaran and Colin wont because if it's too loud and they can't hear me they can't lip read). When he is in water it is awesome.
I will never understand this ability. I would love to hear from others about their experiences with their children or with their own lip reading in life. How do you do it??? This kid never gets it wrong.
On another note, we are heading into NYC for a mapping tomorrow. Just in time because the last few days Cormac has been acting like he isn't hearing as well as normal. Lots of "what did you say?" Not sure what is going on but with some fine tuning tomorrow I have full confidence he will be back to his old self. I took the opportunity to work with him on his confidence to ask others to repeat themselves if he misses something. This is especially important in the class room and will be more important as he gets older. He needs to be able to advocate for himself and never feel embarrassed to ask someone to repeat themselves. So, I taught him to say "excuse me, I didn't hear you. Can you please repeat that again?" Seems like it's working because he said it to me quite a few times this week.
Let's see as for language?? What's Cormac's latest? He told me Black widow spiders are venomous. I asked what does venomous mean? He says "It's poison, Mommy.". He is also telling everyone about Tornadoes. He says "they are funnel clouds" . My sister watched the triplets this morning for a while so I could take Calleigh to the dr and she took them to a class at the Community Center. She said he was basically running the class. They asked them to pretend to be their favorite animal. Cormac's was a penguin and a frog. He told them frogs eat insects with their tongues. SHe basically said he didn't stop talking the entire time right along with the other two nuts I am raising.
But the best story of the week....
Cormac goes into NYC every three months for a mapping. I take him alone because it's just easier. He has referred to NYC as "my city" for as long as I can remember. Whenever we see the skyline he says "look at my city". Ciaran and Colin even refer to it as "cormac's city". He asked if we could bring his brothers and sister with him tomorrow. I said sure. Then he said to Ciaran and Colin "Hey, Ciaran and Colin, do you know why I want to bring you to "my city"? Because I just love you guys!" It was one of the sweetest moments ever. The look on his face was so sincere it made me cry. He is beyond excited to go tomorrow.
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