I hope everyone has had a good year, and if not, I hope 2011 treats you well! 2010 was a great year for us, some things didn't happen quite as expected, but that doesn't make it any less amazing.
First, today is my four year wedding anniversary with my amazing husband Norman. We've been together 9 years in March, and I couldn't be happier than to be married to my best friend. Things aren't always roses and sunshine, but we always make it through together. I have been so impressed with how he has handled Lucas' hearing loss, and done everything that has needed to be done for him with love and compassion. I've been pregnant every other anniversary so far...this year is an unpregnant year, I'm thinking next year should be a pregnant one! ;)
Last year at this time found me about 4 months pregnant. We found out in early December we were having another little boy, a brother for Noah. I had a very large subchorionic bleed at 7 weeks with Lucas, and it was touch and go whether or not I would end up having a miscarriage. That 19 week scan showed the bleed was almost gone, which was the biggest relief to me. It also showed a perfectly normal, healthy baby boy. There was no way to know at that point about his hearing loss, and I'm glad for it. Having one thing to worry about was enough.
March 5th 2010 was Noah's 2nd birthday! He has grown in leaps and bounds this past year. He'll be three in just three months. The official big boy birthday. He is the smartest little man, has a sense of humor way beyond his years, is talking more and more and has an imagination that blows my mind. He has energy that I don't know what to do with (and I wish I could bottle it and keep some for myself!) and has a very strong personality, which can often lead to tantrums. He's rarely mean though, and has a very very sweet sensitive side. He is a FABULOUS older brother to Lucas. Better than I could ever have imagined, and I love seeing the bond between them grow.
April 24th, 2010 our sweet baby boy, that we weren't sure we were going to get to meet, was born. He was born the last day Norman had a show before his due date, exactly one week early, and so Daddy missed it. Here was there in spirit, and thru skype and watched it live. I was in room 13, it wasn't an unlucky room, but it sure was a room with a lot of stories by the time we checked out. We were the room that had Daddy watching thru skype, had the baby that was nearly born on the toilet, and then the room that had the baby that failed the newborn screening.
I won't lie and say that the last part wasn't tough to take. It was. Especially since I had a feeling once I got that news that it wasn't just fluid trapped from birth, despite how quickly he was born. I knew in my gut (and also by the lack of his responses to many sounds, and that all famous baby startle) that he had a hearing loss. Despite the news that sent my world spinning a bit, April 24th was one of the best days of my life. I would not trade the little person that was born on that day for ANYTHING in this entire world. He has enriched my life so much, and this family would not be complete without him in it.
There have been hard things this year. Things like wrapping my brain around what it will mean to have a child with hearing loss. Being told he was profoundly, completely deaf- and fighting to get the right answers since I knew that was wrong. Having lots of appointments, therapies, miles and miles and miles and hours driven in my car. Figuring out babysitters. Feeling like I'm not doing a good enough job at being Mommy to both kids. But despite all that, those are just minor bumps in the road. Things I try not to dwell on too much, but because the good far outweighs the bad.
We have had some amazing experiences because of Lucas' hearing loss. I have met incredible people because of him. They say it takes a village to raise a child. With a child that has special needs, it takes a village, supportive loving family and friends, and a team of caring professionals to help that child grow. How lucky are we to have that in our lives. I have also met other families that have children with hearing loss. They have inspired me so much, with their strength, dedication to their kids, and their positive attitudes. Seeing their amazing children gives me so much hope and encouragement for Lucas. I value the relationships I have been able to build because of Lucas.
We are part of a very tight knit, wonderful community now. Noah and Lucas will grow up being part of both the hearing and the Deaf community. They will have experiences that will enrich their lives, and meet remarkable people. They will grow up with more empathy towards those that are "different" than the rest of us. As a family we will be surrounded by people and families that know what we are going through, will care and lend a supporting shoulder, and down the line, I will do the same for a new family going through the same thing. I wouldn't have wished for Lucas to be deaf, but if I had to choose, I would have chosen this path. It may have it's dark spots, but there is a whole lot of light.
To close out 2010, we bought our first house. A lovely ranch for plenty of room for us to grow and for the boys to play. We will have the horses here hopefully next year, and a pony is on the list for the kids! :D I wish life would slow down a bit (My big boy is almost 3 and my BABY is 8 months old!!), but I'm so excited to see them grow up here, and the memories we will create.
Happy New Years to you and yours! I hope 2011 is a wonderful year for you all, filled with love, laughter and health. Thank you all so very much for all the love and support you have given us this past year. We appreciate it more than words can say!
Friday, December 31, 2010
Sunday, December 5, 2010
Little Mister
Here's a general Lucas update since the last ones have all been about appointments!
He's seven months old now (WHAT?! Where'd my baby go?) and the happiest, most gorgeous little person! He is always so laid back, is always super smiley, and he loooooves his Mama (and boy is the feeling mutual!). He also loves his Daddy and big brother Noah. He's a lot like Noah was at this age. He hasn't been a great sleeper, which is pay back for Noah I suppose, seeing as he STILL sleeps 12-14 hours at night and takes 2-4 hour naps. He's starting to sleep a little bit longer at a time and nap more which I'm thankful for, but I can't get too sad about having to wake up and see his gorgeous little face a few times a night!
He just started crawling last night. He's been up on his hands and knees rocking, and was really good at rotating around for a while. All of a sudden he decided he was ready to crawl, and started cruising all over the place! I think I'm in trouble!
He's doing REALLY well in speech therapy. Our speech therapist Cathy is really great, and so helpful. We have a bunch of songs and games we sing and play that are designed to help him recognize the speech sounds. He's been detecting sounds a lot lately, turning his head to look for them, smiling when he hears them.
We've also been having sign language classes at my house every monday, which has been a lot of fun. Our instructor Joanne is an interpreter and she's a lot fun. My Mom, Dad, Sisters and Josh all come most Monday's so it's a family affair. It's great to have the people he sees most in his life so involved in learning how to communicate with him, it means a lot to me. Afterwards we usually have pizza or something. It's given us a reason to get together at least once a week, since our schedules can be so busy. I look forward to Mondays :)
There's more, but three posts in one day is my limit! It's 11pm and he will most likely be awake in the next couple hours, so it's bedtime for me! Hopefully I will be a little more on top of posting regularly, but I can't promise it! :D
He's seven months old now (WHAT?! Where'd my baby go?) and the happiest, most gorgeous little person! He is always so laid back, is always super smiley, and he loooooves his Mama (and boy is the feeling mutual!). He also loves his Daddy and big brother Noah. He's a lot like Noah was at this age. He hasn't been a great sleeper, which is pay back for Noah I suppose, seeing as he STILL sleeps 12-14 hours at night and takes 2-4 hour naps. He's starting to sleep a little bit longer at a time and nap more which I'm thankful for, but I can't get too sad about having to wake up and see his gorgeous little face a few times a night!
He just started crawling last night. He's been up on his hands and knees rocking, and was really good at rotating around for a while. All of a sudden he decided he was ready to crawl, and started cruising all over the place! I think I'm in trouble!
He's doing REALLY well in speech therapy. Our speech therapist Cathy is really great, and so helpful. We have a bunch of songs and games we sing and play that are designed to help him recognize the speech sounds. He's been detecting sounds a lot lately, turning his head to look for them, smiling when he hears them.
We've also been having sign language classes at my house every monday, which has been a lot of fun. Our instructor Joanne is an interpreter and she's a lot fun. My Mom, Dad, Sisters and Josh all come most Monday's so it's a family affair. It's great to have the people he sees most in his life so involved in learning how to communicate with him, it means a lot to me. Afterwards we usually have pizza or something. It's given us a reason to get together at least once a week, since our schedules can be so busy. I look forward to Mondays :)
There's more, but three posts in one day is my limit! It's 11pm and he will most likely be awake in the next couple hours, so it's bedtime for me! Hopefully I will be a little more on top of posting regularly, but I can't promise it! :D
Booth Testing
Lucas had his first behavioural testing in the sound booth done last week. I very interested to see how it would go. Cindy (his audiologist) explained it to me, and it kind of sounded like a lot to expect from a little baby, but I trust her expertise.
I went in the booth with Lucas, and another Audiologist (Nancy, I think) came in with us. Her job was to play with Lucas, watch for reactions, and point out the little bear that would light up and play drums in the corner after a sound was presented. The goal was for him to correlate to sound to the bear moving. They put little microphones in each ear to send sound into, and Cindy sat outside the booth both talking into the microphones and sending tones into them. I thought we were going to test him with his hearing aids on, but for this test we just tested his natural hearing.
The first few times he heard a sound the audiologist pointed out the bear and made a big deal about it. The third or fourth time he heard a sound he whipped his little head right around to look at the bear before it even lit up. I got a little teary at that first reaction. Deafness sometimes has other syndromes and disabilities associated with it, including cognitive delays, so to see him catch on SO quickly made me feel so good. Of course it also meant he heard the sound she was sending in!
We were in the booth for at least half an hour. He did SO well. He was happy and playing, and responding the whole time. Towards the very end he started losing interest and getting hungry, but still no fussing. We decided to end it there. Cindy was really pleased with how well he did. She said they way he reacted to the sound was great- it meant he's understanding that sound has meaning, and also is learning how to localize to where it's coming from (she tested the right ear too, and he turned in the correct direction!). He also tested right about where his ABR said he should be testing! It was yet another learning experience for me! From now on we'll be having those periodically.
After the booth test we took impressions for new molds since his current ones are starting to get a lot of feedback. I got him red and green swirled molds for the holidays! I couldn't resist!! :D He gets them next week!
I went in the booth with Lucas, and another Audiologist (Nancy, I think) came in with us. Her job was to play with Lucas, watch for reactions, and point out the little bear that would light up and play drums in the corner after a sound was presented. The goal was for him to correlate to sound to the bear moving. They put little microphones in each ear to send sound into, and Cindy sat outside the booth both talking into the microphones and sending tones into them. I thought we were going to test him with his hearing aids on, but for this test we just tested his natural hearing.
The first few times he heard a sound the audiologist pointed out the bear and made a big deal about it. The third or fourth time he heard a sound he whipped his little head right around to look at the bear before it even lit up. I got a little teary at that first reaction. Deafness sometimes has other syndromes and disabilities associated with it, including cognitive delays, so to see him catch on SO quickly made me feel so good. Of course it also meant he heard the sound she was sending in!
We were in the booth for at least half an hour. He did SO well. He was happy and playing, and responding the whole time. Towards the very end he started losing interest and getting hungry, but still no fussing. We decided to end it there. Cindy was really pleased with how well he did. She said they way he reacted to the sound was great- it meant he's understanding that sound has meaning, and also is learning how to localize to where it's coming from (she tested the right ear too, and he turned in the correct direction!). He also tested right about where his ABR said he should be testing! It was yet another learning experience for me! From now on we'll be having those periodically.
After the booth test we took impressions for new molds since his current ones are starting to get a lot of feedback. I got him red and green swirled molds for the holidays! I couldn't resist!! :D He gets them next week!
Sedated ABR in Boston
I've been thinking, and have had a few people mention ;), that I've been very slack on keeping this blog updated! I'll probably slack off again, but for now, I'll update you as much as I can!
Lucas had his sedated ABR (Auditory Brainstem Response hearing test) at Boston Children's hospital on October 27th. I was looking forward to it so much- it was the appointment that was going to give us the answers to his hearing loss. My Dad drove down with me to the appointment since Norman had a show, which I very much appreciated. I hate driving in Boston traffic, and I would have been worrying about Lucas the whole drive home if I was by myself.
We met with Dr. Kenna (pronouced Ken-ay) and went over my pregnancy, his birth, our family history, the testing that had been done up until that point and what we felt we were seeing. I told her that it seems like he responds to louder sounds sometimes, especially when sleeping. She checked him over and made sure he was healthy (he had started coughing slightly that morning, and I was SO worried we were going to have to cancel), and gave him the ok. He was of course, all smiles and flirting with the nurses and being his normal charming little self.
We got sent back to the SOUND PROOF (instead of a back closet) room for the ABR. They gave Lucas an oral sedation, which he drank right down, and he passed out pretty quickly. They got him all hooked up to a heart and O2 monitor to make sure he was tolerating the sedation well. Then they hooked him up to all the ABR wires.
Our audiologist, Gerri, was very nice and very thorough. She took her time and explained things to us as she went along. She tested both ears for about an hour. We got the results right there. His right ear had a response at 90 db for clicks, with no response to tones at 95- so that ear has a profound loss. His left ear however had a response to clicks at 70 db, and to tones at 75db, all across the frequencies. She tested that ear up to about 95 db and it was consistant. That means his left ear has a severe loss (at the beginning of the severe range). That means all those loud sounds that he seemed to respond to were actual responses. It made sense that they weren't consistant, because the small amount of natural "hearing" that he has, is only in one ear. It felt really good to know that I wasn't just imagining things. There is something to be said for Mommy's intuition!!
We talked to Dr. Kenna after the ABR to go over the results. Our course of action is to continue with the hearing aids, speech therapy and sign language, and see how he's doing with it all in Feb. He may do just fine with hearing aids, or he may need an implant in the right ear. It's pretty much a wait and see game right now.
We got his hearing aids adjusted to his audiogram the next week and it made a HUGE difference in his reactions to sound. He immediately started turning more to sounds, and making a wider range of vocalizations. All very encouraging.
I wish we had gone down to Boston a lot sooner, but I can't change the past. I'm just so happy that we FINALLY have more answers to what's going on with his hearing.
And now a bonus- picture's from Boston!!
Grampie and Lucas checking out the busy street below.
Mommy and her little man. I was SO excited for this appointment!
Sedated- all hooked up to the wires.
The microphones they put in each ear.
Waking up- always such a happy little boy!
Lucas had his sedated ABR (Auditory Brainstem Response hearing test) at Boston Children's hospital on October 27th. I was looking forward to it so much- it was the appointment that was going to give us the answers to his hearing loss. My Dad drove down with me to the appointment since Norman had a show, which I very much appreciated. I hate driving in Boston traffic, and I would have been worrying about Lucas the whole drive home if I was by myself.
We met with Dr. Kenna (pronouced Ken-ay) and went over my pregnancy, his birth, our family history, the testing that had been done up until that point and what we felt we were seeing. I told her that it seems like he responds to louder sounds sometimes, especially when sleeping. She checked him over and made sure he was healthy (he had started coughing slightly that morning, and I was SO worried we were going to have to cancel), and gave him the ok. He was of course, all smiles and flirting with the nurses and being his normal charming little self.
We got sent back to the SOUND PROOF (instead of a back closet) room for the ABR. They gave Lucas an oral sedation, which he drank right down, and he passed out pretty quickly. They got him all hooked up to a heart and O2 monitor to make sure he was tolerating the sedation well. Then they hooked him up to all the ABR wires.
Our audiologist, Gerri, was very nice and very thorough. She took her time and explained things to us as she went along. She tested both ears for about an hour. We got the results right there. His right ear had a response at 90 db for clicks, with no response to tones at 95- so that ear has a profound loss. His left ear however had a response to clicks at 70 db, and to tones at 75db, all across the frequencies. She tested that ear up to about 95 db and it was consistant. That means his left ear has a severe loss (at the beginning of the severe range). That means all those loud sounds that he seemed to respond to were actual responses. It made sense that they weren't consistant, because the small amount of natural "hearing" that he has, is only in one ear. It felt really good to know that I wasn't just imagining things. There is something to be said for Mommy's intuition!!
We talked to Dr. Kenna after the ABR to go over the results. Our course of action is to continue with the hearing aids, speech therapy and sign language, and see how he's doing with it all in Feb. He may do just fine with hearing aids, or he may need an implant in the right ear. It's pretty much a wait and see game right now.
We got his hearing aids adjusted to his audiogram the next week and it made a HUGE difference in his reactions to sound. He immediately started turning more to sounds, and making a wider range of vocalizations. All very encouraging.
I wish we had gone down to Boston a lot sooner, but I can't change the past. I'm just so happy that we FINALLY have more answers to what's going on with his hearing.
And now a bonus- picture's from Boston!!
Grampie and Lucas checking out the busy street below.
Mommy and her little man. I was SO excited for this appointment!
Sedated- all hooked up to the wires.
The microphones they put in each ear.
Waking up- always such a happy little boy!
Wednesday, September 22, 2010
Noah Signing!
I'll post a blog soon about how things are going with the hearing aids soon, but havn't had time to sit down and do it yet!
I just had to share this video I took of Noah showing me some of the signs he's learned so far! I am so impressed with how quickly he has picked it all up, and most of all, how much he seems to enjoy it! We've been watching the signing times DVDS, and though I do sign with him, a lot of these he has been(and me too!) picking up from the DVDs. He knows that we are learning to sign so we can talk to Lucas, and will talk about that to people. He is even starting to use the signs if I am talking about something and he knows the sign for it- unprompted! I am just so amazed at him, they are such little sponges at this age, but I didn't know if it would be something that interested him, so I'm thrilled that it is!
http://www.youtube.com/watch?v=WeK6LEG6R_o
I just had to share this video I took of Noah showing me some of the signs he's learned so far! I am so impressed with how quickly he has picked it all up, and most of all, how much he seems to enjoy it! We've been watching the signing times DVDS, and though I do sign with him, a lot of these he has been(and me too!) picking up from the DVDs. He knows that we are learning to sign so we can talk to Lucas, and will talk about that to people. He is even starting to use the signs if I am talking about something and he knows the sign for it- unprompted! I am just so amazed at him, they are such little sponges at this age, but I didn't know if it would be something that interested him, so I'm thrilled that it is!
http://www.youtube.com/watch?v=WeK6LEG6R_o
Friday, September 10, 2010
Hearing Aids!!
I'm a very bad blogger!! Life has been so busy lately, I just havn't had time to sit down and update this!! Here's a GREAT update for you all!!
I think I left off telling you all that we are done with the old ENT office Head and Neck Surgical. I am SO SO glad that we made that decision. I am thrilled that we are back at Northeast Hearing and Speech, and we LOVE our Audiologist Cindy! I feel like she actually listens to me and doesn't discount what I tell her, and doesn't make me feel like I'm just some desperate mother trying to convince herself she's seeing reactions. Our first audiologist was very nice, but I never felt like she took me seriously.
When I first went back to Cindy, she was telling me that she was surprised at the lack of hearing Lucas' ABR showed, based on the behavioural responses we saw at the follow up testing when he was two weeks old. At that time she was of the opinion that he had at least some hearing. I agreed with that based off all the reactions we have continued to see, but the tests said that he wasn't hearing anything. Lately he has actually startled when Noah shrieks, he wakes up when our alarms go off, he wakes up sometimes if we start being loud around him. I have a huge list of times he's woken up, or at least stirred in reaction to the sound, and there hasn't been anything else going on, like Noah jumping nearby or us touching him. I *finally* got good video of him the other day of us waking him up from a very sound sleep just by being loud.
Because of all of these reactions, and the video, Cindy decided to set his hearing aids conservatively. She doesn't want to do damage to any of his hearing if it turns out he has a milder loss. That is FINE with me! I would much rather be safe then sorry. We can always bump it up if he needs more. I would hate to discover that he didn't really have a profound loss, but he does now because we had his hearing aids set too high!
He finally got his hearing aids yesterday, 9/9/10! They are so teeny tiny and so cute! I got him a blue mold and a green mold, to make it fun! I want this to be something he can be proud of! We went over all the different parts, and the care for them. It's pretty straight forward, the hardest part is putting them in. It's not really that difficult, but right now I can't do it very well unless he's sitting in a bebepod seat. I'm sure within a short period of time I'll be able to put these things on upside down with my eyes closed! He is SUCH a good baby, and doesn't fuss at all while we are messing with his ears and putting them in. I am so lucky with him! I'm having a little bit of trouble with feedback and whistling, but I think it may partly be user error. Like I said, I'm not great at putting them in yet, so hopefully in the next couple of days I'll be able to get the fit better. Either that or we may need to get new molds made. He is a very fast growing little guy, and his molds were made a few weeks ago! I'll call monday if I'm still having problems.
It has been SO awesome to see him responding to sound! I can't even explain it! I have been on cloud nine, and just giddy with happiness for him!! When we first put them in he was looking around a lot more. Usually he finds something to look at that interests him and will stare at it for a while, but he has been really checking things out when people are talking. After we put them on in the office yesterday Cindy was holding him and he was looking down chewing on his hands. I said "Hi Lucas" and he looked right up at me and smiled! Man, what a feeling!! When I got home he was passed out in the car, the kind of sleep where their mouths are hanging open and they are just OUT. I started talking to him in a normal voice and his little eyes opened right up, and you could see in them that he was wondering what *was* that that had just woken him up! Of course I was so excited I forgot to take video of that! We're not going to see him turn to sound right off the bat most of the time. He's pretty much a newborn in terms of hearing right now, and it takes a few months for babies to start to turn to sound and their names. Right now we are looking for signs that he notices sounds, like widening of the eyes, stopping sucking or whatever he's doing when he hears a sound, startling etc. It's so obvious to me that he IS hearing things with his hearing aids on. It doesn't mean that he wont still need an implant. It all depends on how *much* he's able to hear, and if he's able to hear the speech sounds. If he can't hear the speech sounds, he wont learn to speak and listen properly. However, getting access to sound is SO important because it keeps the auditory centers in his brain stimulated, and will make it that much easier on him if he *does* need an implant.
I got a little bit of video tonight of him waking up in his car seat when I'm talking to him. I started to watch the video on my phone and that woke him up completely and boy was he upset with me! Wish I had gotten that on camera too! Hopefully I'll have lots more video of him hearing to post soon, and I wont have to be waking him up every time to get it! :D I'll have videos posted on facebook, so if you're not already my friend add me: Tonya Ng
I want to thank EVERYONE that has been so supportive, and have had such kind words for us. We are not alone in this journey with all of you behind us. Lucas is a very very lucky child to have so many people that love him and are cheering for him. You all have helped be our strength when things were/are going rough, and have been our cheerleaders when things are going well. I can't thank you enough for that.
I think I left off telling you all that we are done with the old ENT office Head and Neck Surgical. I am SO SO glad that we made that decision. I am thrilled that we are back at Northeast Hearing and Speech, and we LOVE our Audiologist Cindy! I feel like she actually listens to me and doesn't discount what I tell her, and doesn't make me feel like I'm just some desperate mother trying to convince herself she's seeing reactions. Our first audiologist was very nice, but I never felt like she took me seriously.
When I first went back to Cindy, she was telling me that she was surprised at the lack of hearing Lucas' ABR showed, based on the behavioural responses we saw at the follow up testing when he was two weeks old. At that time she was of the opinion that he had at least some hearing. I agreed with that based off all the reactions we have continued to see, but the tests said that he wasn't hearing anything. Lately he has actually startled when Noah shrieks, he wakes up when our alarms go off, he wakes up sometimes if we start being loud around him. I have a huge list of times he's woken up, or at least stirred in reaction to the sound, and there hasn't been anything else going on, like Noah jumping nearby or us touching him. I *finally* got good video of him the other day of us waking him up from a very sound sleep just by being loud.
Because of all of these reactions, and the video, Cindy decided to set his hearing aids conservatively. She doesn't want to do damage to any of his hearing if it turns out he has a milder loss. That is FINE with me! I would much rather be safe then sorry. We can always bump it up if he needs more. I would hate to discover that he didn't really have a profound loss, but he does now because we had his hearing aids set too high!
He finally got his hearing aids yesterday, 9/9/10! They are so teeny tiny and so cute! I got him a blue mold and a green mold, to make it fun! I want this to be something he can be proud of! We went over all the different parts, and the care for them. It's pretty straight forward, the hardest part is putting them in. It's not really that difficult, but right now I can't do it very well unless he's sitting in a bebepod seat. I'm sure within a short period of time I'll be able to put these things on upside down with my eyes closed! He is SUCH a good baby, and doesn't fuss at all while we are messing with his ears and putting them in. I am so lucky with him! I'm having a little bit of trouble with feedback and whistling, but I think it may partly be user error. Like I said, I'm not great at putting them in yet, so hopefully in the next couple of days I'll be able to get the fit better. Either that or we may need to get new molds made. He is a very fast growing little guy, and his molds were made a few weeks ago! I'll call monday if I'm still having problems.
It has been SO awesome to see him responding to sound! I can't even explain it! I have been on cloud nine, and just giddy with happiness for him!! When we first put them in he was looking around a lot more. Usually he finds something to look at that interests him and will stare at it for a while, but he has been really checking things out when people are talking. After we put them on in the office yesterday Cindy was holding him and he was looking down chewing on his hands. I said "Hi Lucas" and he looked right up at me and smiled! Man, what a feeling!! When I got home he was passed out in the car, the kind of sleep where their mouths are hanging open and they are just OUT. I started talking to him in a normal voice and his little eyes opened right up, and you could see in them that he was wondering what *was* that that had just woken him up! Of course I was so excited I forgot to take video of that! We're not going to see him turn to sound right off the bat most of the time. He's pretty much a newborn in terms of hearing right now, and it takes a few months for babies to start to turn to sound and their names. Right now we are looking for signs that he notices sounds, like widening of the eyes, stopping sucking or whatever he's doing when he hears a sound, startling etc. It's so obvious to me that he IS hearing things with his hearing aids on. It doesn't mean that he wont still need an implant. It all depends on how *much* he's able to hear, and if he's able to hear the speech sounds. If he can't hear the speech sounds, he wont learn to speak and listen properly. However, getting access to sound is SO important because it keeps the auditory centers in his brain stimulated, and will make it that much easier on him if he *does* need an implant.
I got a little bit of video tonight of him waking up in his car seat when I'm talking to him. I started to watch the video on my phone and that woke him up completely and boy was he upset with me! Wish I had gotten that on camera too! Hopefully I'll have lots more video of him hearing to post soon, and I wont have to be waking him up every time to get it! :D I'll have videos posted on facebook, so if you're not already my friend add me: Tonya Ng
I want to thank EVERYONE that has been so supportive, and have had such kind words for us. We are not alone in this journey with all of you behind us. Lucas is a very very lucky child to have so many people that love him and are cheering for him. You all have helped be our strength when things were/are going rough, and have been our cheerleaders when things are going well. I can't thank you enough for that.
Saturday, August 14, 2010
Goodbye Head and Neck Surgical!
This post would have come sooner, but I was busy lying to my sister about some "appointments" we had so that she would "babysit". I then called her and told her those "appointments" were cancelled, and she went with her boyfriend to a "video shoot" and got proposed to! :D Congrats Crystal and Josh! Needless to say, I couldn't post what was really going until after that happened in case she read it, had to keep my cover going!
So anyway. Our last ABR with Lucas was on June 28th. At that time we were told they would be contacting Mass Eye and Ear and we would go from there. I got a call a few days later saying that the doctor down there was out until July 12th, but once they heard from her, they'd give me a call and let me know the next step. I got a call around the 15th saying the doctor down there wanted us to do the CT scan and genetic testing up here first, and that the ENT's medical assistant would be giving me a call to schedule it. I waited until the last week of July, and still no call. Norman was going on the road soon and I called and left a message with the medical assistant telling her that (as he needs to be present in order for his blood to be drawn!) and asked her to call me back so we could schedule an appointment. That was on Monday July 26th. Friday the 30th came along and I hadn't heard anything. I was getting annoyed by this point, it had been over a month since his last appointment, and nothing else had been done.
I decided to call and leave a message for the audiologist instead, as she was the one that had called me in the first place. I explained the situation, and asked her to give me a call back. She called me back on Monday and said that they were waiting on the CT scan because he needed to be sedated. OK. Then she said she was waiting for insurance to approve the genetic testing because it is $700. I asked if they had sent for approval yet, and she said they had. Then I asked when we were going to go down to Mass Eye and Ear, and she said we didn't need to go down for at least three months. I asked what we were doing about hearing aids and she said she didn't think he needed them. She said she would ask Mass Eye and Ear if they wanted to do a trial and let me know. I was upset by her answer because it's important that he get hearing aids for many reasons. We need to see if they will help, they keep the auditory nerve stimulated, they get him used to wearing something on his ears, and most importantly, most insurance agencies REQUIRE a 6 month hearing aid trial before allowing a cochlear Implant.
Since I was unhappy with the lack of communication with the office, and the information I got from the audiologist I called my Pedi Dr. Miller to see what we could do. He agreed that they didn't sound like the right fit for us, and sent us for a 2nd opinion to Dr. Damion. We went there this past week and he was really nice. I told him what was going on and he immediately said we should go straight to Boston Children's and get the testing done down there instead. I was really happy with that answer!
There's a lot more that is going on, but it's hard to find time to sit down and write it all out. More updates coming soon- we are finally moving in the right direction!!
So anyway. Our last ABR with Lucas was on June 28th. At that time we were told they would be contacting Mass Eye and Ear and we would go from there. I got a call a few days later saying that the doctor down there was out until July 12th, but once they heard from her, they'd give me a call and let me know the next step. I got a call around the 15th saying the doctor down there wanted us to do the CT scan and genetic testing up here first, and that the ENT's medical assistant would be giving me a call to schedule it. I waited until the last week of July, and still no call. Norman was going on the road soon and I called and left a message with the medical assistant telling her that (as he needs to be present in order for his blood to be drawn!) and asked her to call me back so we could schedule an appointment. That was on Monday July 26th. Friday the 30th came along and I hadn't heard anything. I was getting annoyed by this point, it had been over a month since his last appointment, and nothing else had been done.
I decided to call and leave a message for the audiologist instead, as she was the one that had called me in the first place. I explained the situation, and asked her to give me a call back. She called me back on Monday and said that they were waiting on the CT scan because he needed to be sedated. OK. Then she said she was waiting for insurance to approve the genetic testing because it is $700. I asked if they had sent for approval yet, and she said they had. Then I asked when we were going to go down to Mass Eye and Ear, and she said we didn't need to go down for at least three months. I asked what we were doing about hearing aids and she said she didn't think he needed them. She said she would ask Mass Eye and Ear if they wanted to do a trial and let me know. I was upset by her answer because it's important that he get hearing aids for many reasons. We need to see if they will help, they keep the auditory nerve stimulated, they get him used to wearing something on his ears, and most importantly, most insurance agencies REQUIRE a 6 month hearing aid trial before allowing a cochlear Implant.
Since I was unhappy with the lack of communication with the office, and the information I got from the audiologist I called my Pedi Dr. Miller to see what we could do. He agreed that they didn't sound like the right fit for us, and sent us for a 2nd opinion to Dr. Damion. We went there this past week and he was really nice. I told him what was going on and he immediately said we should go straight to Boston Children's and get the testing done down there instead. I was really happy with that answer!
There's a lot more that is going on, but it's hard to find time to sit down and write it all out. More updates coming soon- we are finally moving in the right direction!!
Thursday, July 22, 2010
Early Child and Family Services
Our Case manager, Tobin, from ECFS came out last week. She works at Baxter School for the Deaf, and will be our contact for implementing and receiving services. She was really nice, and had a lot of information for us.
She basically told us about all the different options that were available to us, and that we were in charge of how often we wanted to receive them. I told her we wanted to be as proactive as possible, so would probably be taking advantage of everything they had to offer! There is a Parent/Infant program at Baxter twice a week in the fall that we will be attending. On tuesdays the babies (and Noah as well!) go downstairs to their preschool and hang out with some of the teachers. The parents go upstairs and have discussions on many different topics relating to hearing loss/education etc. Then on Thursdays there is a signing class for the Parents and their children. I'm really looking forward to it. I think it will be GREAT for both Lucas and Noah, and also for us because we will be able to meet and talk to families that are going through the same thing.
I also asked her about any ASL classes that the rest of our family could take. My parents and sisters, and most of the rest of my extended family have all expressed interest in learning to sign. I have to say that means SO SO much to us. Tobin told us that if we wanted, we could have someone come out to our house just to help us learn ASL, for anyone that wants to attend! I am so excited about that! That will be in the fall as well, because as they are a school, most people are off for the summer. I will definitely let everyone know once we start scheduling those sessions. We'll probably make it fun and have pizza parties or something on those nights as well!
She left us with a large three ring binder FULL of information about hearing loss and all that it entails. I've been reading it and have found it incredibly helpful. I'm really excited to get started with everything they offer us!
She basically told us about all the different options that were available to us, and that we were in charge of how often we wanted to receive them. I told her we wanted to be as proactive as possible, so would probably be taking advantage of everything they had to offer! There is a Parent/Infant program at Baxter twice a week in the fall that we will be attending. On tuesdays the babies (and Noah as well!) go downstairs to their preschool and hang out with some of the teachers. The parents go upstairs and have discussions on many different topics relating to hearing loss/education etc. Then on Thursdays there is a signing class for the Parents and their children. I'm really looking forward to it. I think it will be GREAT for both Lucas and Noah, and also for us because we will be able to meet and talk to families that are going through the same thing.
I also asked her about any ASL classes that the rest of our family could take. My parents and sisters, and most of the rest of my extended family have all expressed interest in learning to sign. I have to say that means SO SO much to us. Tobin told us that if we wanted, we could have someone come out to our house just to help us learn ASL, for anyone that wants to attend! I am so excited about that! That will be in the fall as well, because as they are a school, most people are off for the summer. I will definitely let everyone know once we start scheduling those sessions. We'll probably make it fun and have pizza parties or something on those nights as well!
She left us with a large three ring binder FULL of information about hearing loss and all that it entails. I've been reading it and have found it incredibly helpful. I'm really excited to get started with everything they offer us!
CDS Evaluation
Child Development Services stopped by yesterday and evaluated Lucas. He automatically qualifies for services due to his hearing, but the evaluate to determine what his plan will be and make sure there is nothing else he will need.
They were two very nice ladies, and they were great at explaining everything. They started out by picking Lucas up and testing his neck/trunk/leg strength. That is one area I am NOT concerned with. Just like his big brother, he is very strong, and they were really impressed with him. They put him on his tummy and he immediately started doing the "superman", lifting his head and his legs at the same time. Very cute, and just what he should be doing!
Next they shined a little light at him and tried to get him to track it. He didn't do it- he was WAY too busy smiling and flirting with the lady that had the light. This is one area that I had/have concerns. If he is looking at your face and interacting with you, it's really hard to get him to look at something else. However, I came to the conclusion, and the CDS ladies agreed, that because he can't hear faces are *very* interesting to him, and give him the most input and pleasure. Babies love to look at faces anyway, but Lucas seems to really love it! They were able to get him to track an object and look left and right, so they weren't worried. I feel much better about it, but will probably still ask his Pedi Dr. Miller to make sure everything is looking good with his eyes at his next appointment- just for extra reassurance.
The one thing he didn't do much of was grab at the toys they held for him. He did bring his hands to midline and kind of reach for a lego, but he wasn't that interested. They weren't too concerned, just said to keep an eye on it. Of course after they left I was thinking about that, and realized that I don't hang a lot of toys in front of him. I'm always interacting with him face to face, and signing to him. He hasn't had much opportunity to explore with toys like that (bad mommy!). I hung a bunch of toys on his playmat, and he started grabbing at them and kicking them within a few minutes. Sometimes I can be a little slow to catch on! ;)
He was SO smiley and happy and talkative the whole time they were there. They said he obviously is a very social little guy, and they didn't have any worries about his cognitive or gross/fine motor skills. It was such a relief to hear that, even though I know he's doing great.
My mind tends to go to places it shouldn't and I get really worried about little things that I *know* I shouldn't be worrying about. I'm still nervous about the genetic testing, but hopefully once we get answers (either way) I'll relax a bit. I'm really really really crossing my fingers that he doesn't have anything else going on besides the hearing loss.
I didn't realize this, but CDS actually provides monetary help. They will be reimbursing us 22 cents a mile for every trip to the audiologist/ENT, and will be helping with the cost of any hearing aids and even the Signing Times DVDs. That was a pleasant surprise! They will be a supplement to the Early Child and Family Services people, and will fill any gaps, or pay for any programs they don't cover. I am so pleased that we have so many resources available to us. Our tax dollars hard at work!
It was a great appointment, and I was really happy with the outcome. Noah was present for it, and although he was a little bit of a distraction (he's Mister social, and was trying to get the ladies to play with him the whole time!) I think it was good for him to be part of it because it's something that will be a part of our lives now.
They were two very nice ladies, and they were great at explaining everything. They started out by picking Lucas up and testing his neck/trunk/leg strength. That is one area I am NOT concerned with. Just like his big brother, he is very strong, and they were really impressed with him. They put him on his tummy and he immediately started doing the "superman", lifting his head and his legs at the same time. Very cute, and just what he should be doing!
Next they shined a little light at him and tried to get him to track it. He didn't do it- he was WAY too busy smiling and flirting with the lady that had the light. This is one area that I had/have concerns. If he is looking at your face and interacting with you, it's really hard to get him to look at something else. However, I came to the conclusion, and the CDS ladies agreed, that because he can't hear faces are *very* interesting to him, and give him the most input and pleasure. Babies love to look at faces anyway, but Lucas seems to really love it! They were able to get him to track an object and look left and right, so they weren't worried. I feel much better about it, but will probably still ask his Pedi Dr. Miller to make sure everything is looking good with his eyes at his next appointment- just for extra reassurance.
The one thing he didn't do much of was grab at the toys they held for him. He did bring his hands to midline and kind of reach for a lego, but he wasn't that interested. They weren't too concerned, just said to keep an eye on it. Of course after they left I was thinking about that, and realized that I don't hang a lot of toys in front of him. I'm always interacting with him face to face, and signing to him. He hasn't had much opportunity to explore with toys like that (bad mommy!). I hung a bunch of toys on his playmat, and he started grabbing at them and kicking them within a few minutes. Sometimes I can be a little slow to catch on! ;)
He was SO smiley and happy and talkative the whole time they were there. They said he obviously is a very social little guy, and they didn't have any worries about his cognitive or gross/fine motor skills. It was such a relief to hear that, even though I know he's doing great.
My mind tends to go to places it shouldn't and I get really worried about little things that I *know* I shouldn't be worrying about. I'm still nervous about the genetic testing, but hopefully once we get answers (either way) I'll relax a bit. I'm really really really crossing my fingers that he doesn't have anything else going on besides the hearing loss.
I didn't realize this, but CDS actually provides monetary help. They will be reimbursing us 22 cents a mile for every trip to the audiologist/ENT, and will be helping with the cost of any hearing aids and even the Signing Times DVDs. That was a pleasant surprise! They will be a supplement to the Early Child and Family Services people, and will fill any gaps, or pay for any programs they don't cover. I am so pleased that we have so many resources available to us. Our tax dollars hard at work!
It was a great appointment, and I was really happy with the outcome. Noah was present for it, and although he was a little bit of a distraction (he's Mister social, and was trying to get the ladies to play with him the whole time!) I think it was good for him to be part of it because it's something that will be a part of our lives now.
Wednesday, July 7, 2010
Signing Savvy
I've been using this great website to learn signs for Lucas. It has thousands of signs, all shown in little video clips. You can look up words, or phrases. I've found it to be SO helpful while we are waiting for the Early Intervention services to start up. It's actually been pretty fun to learn the signs, and use them when talking to Lucas. I always talk to him while I am signing. It's really important that we continue to communicate with him verbally even as we sign to him.
I've started teaching Noah some signs too. He is picking it up SO quickly. His little brain is like a sponge. He doesn't do them all 100% correctly, but he is trying, and seems really into it, which is exciting. It makes me happy to know that Noah will probably pick this up quicker then the rest of us, and will also be able to communicate with his brother. I've been talking to Noah about what is going on with Lucas, but I'm sure he doesn't really get it yet. I've told him the Lucas' ears don't work right now and he can't hear us when we talk to him, and that's why we need to learn to talk to him with our hands. This website makes learning how to talk with his hands fun for him because he can watch the videos and try to mimic it. He loves stuff like that.
I've been compiling a list of words, names and phrases that we use often around Lucas. Every day I add more, and I am sure it will be a work in progress for a long time. You can create quizzes off the word list, which I have found very helpful. I'm sharing the link so that anyone that is interested can use it, and if anyone has any words, names or phrases they would like to see on it, just let me know and I'll add them!
http://www.signingsavvy.com/browse.php?list=9425&submit=View+List
I'm so glad there are resources like this out there for us. It is important to me that we get started on being able to communicate with him as soon as possible. He's only 10 weeks old, but I'm all about being proactive as possible, it can only help.
I've started teaching Noah some signs too. He is picking it up SO quickly. His little brain is like a sponge. He doesn't do them all 100% correctly, but he is trying, and seems really into it, which is exciting. It makes me happy to know that Noah will probably pick this up quicker then the rest of us, and will also be able to communicate with his brother. I've been talking to Noah about what is going on with Lucas, but I'm sure he doesn't really get it yet. I've told him the Lucas' ears don't work right now and he can't hear us when we talk to him, and that's why we need to learn to talk to him with our hands. This website makes learning how to talk with his hands fun for him because he can watch the videos and try to mimic it. He loves stuff like that.
I've been compiling a list of words, names and phrases that we use often around Lucas. Every day I add more, and I am sure it will be a work in progress for a long time. You can create quizzes off the word list, which I have found very helpful. I'm sharing the link so that anyone that is interested can use it, and if anyone has any words, names or phrases they would like to see on it, just let me know and I'll add them!
http://www.signingsavvy.com/browse.php?list=9425&submit=View+List
I'm so glad there are resources like this out there for us. It is important to me that we get started on being able to communicate with him as soon as possible. He's only 10 weeks old, but I'm all about being proactive as possible, it can only help.
A peek into a different future...
We went camping with the Boys and my Dad this weekend (I was very outnumbered!). It was a total blast. Noah was a little tornado, but had tons of fun, and Lucas did great!
The bathrooms had been closed all day, and finally around 8pm they reopened them. I went to go take a shower, and of course there was a line since everyone else had the same idea. While I was waiting, I watched two Mom's that were bathing their babies in the sinks. They were probably around one and 18 months old. I watched and listened as they talked to their cute little girls, and their girls responded. Their hands were pretty full trying to contain slippery baby and clean them at the same time. I had a moment where I flashed to the future and put myselves in their places. I thought of how, even if Lucas had hearing aids or a cochlear implant at that point, he wouldn't be wearing them for a bath. I thought about how it would probably be hard to sign to him, while I was trying to keep him from falling over in the sink and clean him at the same time. Of course, neither of these things are devestating, but it did make me a little sad for the future instances like that where I wouldn't be able to really have a conversation with him while I was bathing him. It was the first time I had really been around other babies (other then my neice, but she's younger, so it's different) and thought of how different it will be for us sometimes.
I didn't let myself have a pity party over it, but I wont lie and say it didn't make me a little sad. I have been reminding myself that the things I REALLY want for him are for him to not have any other problems, and something like not being able to talk to him sometimes in situations like that really isn't the end of the world. But still, I have my moments when things get me a little bummed out. I'm sure there will be more instances like this in the future, and I think it's ok to be a little sad, as long as I don't dwell on it.
He is such an incredibly happy baby. He smiles all the time, and will stare at you forever and have little conversations with you, puncuated with happy grins, and little giggles. He also loves it when I sign to him. There are plenty of positives that outweight the bad. One silver lining is that when my 28 month old is being loud of having a holy fit and Lucas is sleeping, he generally won't wake up! :)
The bathrooms had been closed all day, and finally around 8pm they reopened them. I went to go take a shower, and of course there was a line since everyone else had the same idea. While I was waiting, I watched two Mom's that were bathing their babies in the sinks. They were probably around one and 18 months old. I watched and listened as they talked to their cute little girls, and their girls responded. Their hands were pretty full trying to contain slippery baby and clean them at the same time. I had a moment where I flashed to the future and put myselves in their places. I thought of how, even if Lucas had hearing aids or a cochlear implant at that point, he wouldn't be wearing them for a bath. I thought about how it would probably be hard to sign to him, while I was trying to keep him from falling over in the sink and clean him at the same time. Of course, neither of these things are devestating, but it did make me a little sad for the future instances like that where I wouldn't be able to really have a conversation with him while I was bathing him. It was the first time I had really been around other babies (other then my neice, but she's younger, so it's different) and thought of how different it will be for us sometimes.
I didn't let myself have a pity party over it, but I wont lie and say it didn't make me a little sad. I have been reminding myself that the things I REALLY want for him are for him to not have any other problems, and something like not being able to talk to him sometimes in situations like that really isn't the end of the world. But still, I have my moments when things get me a little bummed out. I'm sure there will be more instances like this in the future, and I think it's ok to be a little sad, as long as I don't dwell on it.
He is such an incredibly happy baby. He smiles all the time, and will stare at you forever and have little conversations with you, puncuated with happy grins, and little giggles. He also loves it when I sign to him. There are plenty of positives that outweight the bad. One silver lining is that when my 28 month old is being loud of having a holy fit and Lucas is sleeping, he generally won't wake up! :)
Tuesday, June 29, 2010
THANK YOU!
I didn't mean for this post to be made so late, but I really wanted to get all the details written down before I forgot them all.
THANK YOU so much to all of our family and friends that have supported us throughout this whole process. Your love and support means the world to us. To know that you are all there as shoulders to lean on, with kind and encouraging words has made this process that much easier. I have been humbled by the compassion that we have received. To have so many people show their support and willingness to learn right along with us has been amazing. Lucas is so very very lucky to have been born into such a wonderful group of people.
So Thank You, Thank You, Thank you! I hope you all know how very appreciated you are!
Love, Tonya, Norman, Noah and Lucas!
THANK YOU so much to all of our family and friends that have supported us throughout this whole process. Your love and support means the world to us. To know that you are all there as shoulders to lean on, with kind and encouraging words has made this process that much easier. I have been humbled by the compassion that we have received. To have so many people show their support and willingness to learn right along with us has been amazing. Lucas is so very very lucky to have been born into such a wonderful group of people.
So Thank You, Thank You, Thank you! I hope you all know how very appreciated you are!
Love, Tonya, Norman, Noah and Lucas!
Welcome To Holland
A friend of mine shared this with me (thanks Katie!), and I found it really touching so I wanted to share it here too.
Welcome to Holland
I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this…
When you're going to have a baby, it's like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!" you say. "What do you mean, Holland?" I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy.
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life you will say, "Yes, that's where I was supposed to go. That's what I had planned."
The pain of that will never, ever, go away, because the loss of that dream is a very significant loss.
But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.
Written by Emily Perl Kingsley
I feel blessed to have one foot in Italy and one foot in Holland. Two beautiful places in their own unique ways. I'm really trying to embrace the fact that just because this isn't what we were expecting, or would have chosen, it's our journey to make with Lucas and we will make sure it is a wonderful one. I love both my boys equally and know this will only make our family stronger.
Welcome to Holland
I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this…
When you're going to have a baby, it's like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!" you say. "What do you mean, Holland?" I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy.
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life you will say, "Yes, that's where I was supposed to go. That's what I had planned."
The pain of that will never, ever, go away, because the loss of that dream is a very significant loss.
But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.
Written by Emily Perl Kingsley
I feel blessed to have one foot in Italy and one foot in Holland. Two beautiful places in their own unique ways. I'm really trying to embrace the fact that just because this isn't what we were expecting, or would have chosen, it's our journey to make with Lucas and we will make sure it is a wonderful one. I love both my boys equally and know this will only make our family stronger.
Monday, June 28, 2010
Information we've received so far
I've been looking into all our options. Both sign language and hearing amplification. I found a website www.oraldeaf.org that has some REALLY good information and a great video about kids that either have high powered hearing aids or cochlear implants that are severely/profoundly deaf. It's amazing to see those children in school speaking and listening with their peers, you wouldn't even guess they were deaf. I got some information kits sent to us so that we could learn more about it, and so my family could get educated on cochlear implants as well.
Baxter school for the deaf have a lot of great programs. They have an oral deaf program (for kids with implants or aids that are learning to hear and speak) and also a traditional deaf school that teaches ASL. They have a bunch of programs for famililes of deaf children, that I am currently looking into.
We have decided to both learn sign language and are also hoping he will be able to receive a cochlear implant. He IS a deaf child, and we want to be able to communicate with him before, and after he gets his implant because he will still be a deaf child, especially if he doesn't have his implant on. Plus I want him to be able to be a part of the deaf culture and all the amazing things that come with it. I do hope he'll be able to hear and speak since the majority of the world is a hearing and speaking place. I want him to be able to be in mainstream schools. I want his life to be a "normal" as possible, he will just be bilingual in a different way :)
Children's Developmental Services has also contacted me and informed us that we are eligible for free services like speech therapy, which is amazing. They make home visits, which is GREAT since Noah will able to be included, which I think is really important. I'm waiting on getting some paperwork from them, and am looking forward to getting started. I want to start learning sign, and anything else they feel we need to learn ASAP! Let's get this ball rolling!
I want to be as proactive as possible, and have a lot of things to look into. Lucas will have the best life possible, and is so incredibly loved. To quote Mary Poppins, he is "practically perfect in every way". :) This is certainly a challenge, and something I wasn't expecting, but we will meet this challenge head on and make the best of it. I'm sure there are some amazing experiences that will come of this.
Baxter school for the deaf have a lot of great programs. They have an oral deaf program (for kids with implants or aids that are learning to hear and speak) and also a traditional deaf school that teaches ASL. They have a bunch of programs for famililes of deaf children, that I am currently looking into.
We have decided to both learn sign language and are also hoping he will be able to receive a cochlear implant. He IS a deaf child, and we want to be able to communicate with him before, and after he gets his implant because he will still be a deaf child, especially if he doesn't have his implant on. Plus I want him to be able to be a part of the deaf culture and all the amazing things that come with it. I do hope he'll be able to hear and speak since the majority of the world is a hearing and speaking place. I want him to be able to be in mainstream schools. I want his life to be a "normal" as possible, he will just be bilingual in a different way :)
Children's Developmental Services has also contacted me and informed us that we are eligible for free services like speech therapy, which is amazing. They make home visits, which is GREAT since Noah will able to be included, which I think is really important. I'm waiting on getting some paperwork from them, and am looking forward to getting started. I want to start learning sign, and anything else they feel we need to learn ASAP! Let's get this ball rolling!
I want to be as proactive as possible, and have a lot of things to look into. Lucas will have the best life possible, and is so incredibly loved. To quote Mary Poppins, he is "practically perfect in every way". :) This is certainly a challenge, and something I wasn't expecting, but we will meet this challenge head on and make the best of it. I'm sure there are some amazing experiences that will come of this.
2nd appointment at Head and Neck
Ok, I'm all caught up on what's been going on. That brings us to our Audiologist appointment today.
I only kept Lucas awake for 2 1/2 hours today instead of 4. I think he was OVER tired last time and that's why it took so long for him to fall back asleep. I did starve the poor boy for four hours though.
We got there and went right to the room to do the ABR. We decided to put the electrodes on FIRST this time and then have my nurse him to sleep. This worked great! He passed out nursing, but when I tried to lay him down he woke back up. We decided to put him in his car seat and have Norman go up and down the stairs with him as this usually puts him to sleep. After one trip he was out!
We hooked him up and one of the electrodes wasn't reading correctly. She had to remove them and put them back on a couple times. Finally after some wiggling of the wires we got the green light and were good to go.
She started the test and this time I could see the screen. Of course it was like latin to me, I had no idea what I was looking at. Norman didn't either, and asked what we were seeing. She told us the waves we were looking at were what the nerve was showing in response to the sound being emitted into his ear. What she wanted to see were repeatable spikes which would indicate normal hearing. We weren't seeing any of that. She tested both ears and got the same response.
I had shown her my list, and asked her about it. She said she couldn't explain it, and it could just be coincidence, or that maybe I was noticing it because I was looking for it, which could definitely be.
Since he was still asleep she decided to repeat to OAE test (which tests the inner ear hairs). She got "refer" as a result that time. While she was doing this she realized she did the test with the mics in the wrong ears. She put the right ear mic in the left ear and vice versa. She didn't think it would matter that much, but wanted to repeat the test just in case. Of course at this point he was awake and hungry so I nursed him again and Norman went off to do some more exercise on the stairs to get him to sleep. She felt really bad, but everyone makes mistakes, I'd rather double check and do it right.
Norman came back up, and though I thought it would be AWESOME if we got different results, I was realistic and wasn't surprised when it came back the same.
After that we started talking about the next steps. She said she felt she could confidently say he was profoundly hard of hearing (aka deaf). She said she would contact Boston and see what they wanted us to do for the next steps. They work as a team, and she said they could do some stuff here, like genetic testing (to try to determine cause) and the CT scan (poor guy!) to make sure his cochlea would be able to receive an implant (hopefully!). She was really nice. She said she would probably be contacting us in the next day or so with our next step after she talks to boston.
I only kept Lucas awake for 2 1/2 hours today instead of 4. I think he was OVER tired last time and that's why it took so long for him to fall back asleep. I did starve the poor boy for four hours though.
We got there and went right to the room to do the ABR. We decided to put the electrodes on FIRST this time and then have my nurse him to sleep. This worked great! He passed out nursing, but when I tried to lay him down he woke back up. We decided to put him in his car seat and have Norman go up and down the stairs with him as this usually puts him to sleep. After one trip he was out!
We hooked him up and one of the electrodes wasn't reading correctly. She had to remove them and put them back on a couple times. Finally after some wiggling of the wires we got the green light and were good to go.
She started the test and this time I could see the screen. Of course it was like latin to me, I had no idea what I was looking at. Norman didn't either, and asked what we were seeing. She told us the waves we were looking at were what the nerve was showing in response to the sound being emitted into his ear. What she wanted to see were repeatable spikes which would indicate normal hearing. We weren't seeing any of that. She tested both ears and got the same response.
I had shown her my list, and asked her about it. She said she couldn't explain it, and it could just be coincidence, or that maybe I was noticing it because I was looking for it, which could definitely be.
Since he was still asleep she decided to repeat to OAE test (which tests the inner ear hairs). She got "refer" as a result that time. While she was doing this she realized she did the test with the mics in the wrong ears. She put the right ear mic in the left ear and vice versa. She didn't think it would matter that much, but wanted to repeat the test just in case. Of course at this point he was awake and hungry so I nursed him again and Norman went off to do some more exercise on the stairs to get him to sleep. She felt really bad, but everyone makes mistakes, I'd rather double check and do it right.
Norman came back up, and though I thought it would be AWESOME if we got different results, I was realistic and wasn't surprised when it came back the same.
After that we started talking about the next steps. She said she felt she could confidently say he was profoundly hard of hearing (aka deaf). She said she would contact Boston and see what they wanted us to do for the next steps. They work as a team, and she said they could do some stuff here, like genetic testing (to try to determine cause) and the CT scan (poor guy!) to make sure his cochlea would be able to receive an implant (hopefully!). She was really nice. She said she would probably be contacting us in the next day or so with our next step after she talks to boston.
List of "hearing responses"
So we continued to see what looked like responses to sound. Which was very confusing considering the test results. I tried to not to go out of my way to look for responses (though I'm sure I have) and I also only recorded responsed where the only thing happening at that moment was the sound. No vibrations, no movement, wind etc. I ended up with a pretty good list to take to the audiologist. I didn't write it down to convince myself he could hear, but to have as a record to give to them if they asked. It has been confusing, because he will have a reaction that will seem like a normal infant reaction to being woken up by sound, and then remember that he's not supposed to be able to hear. He doesn't startle though, he just stirs awake.
Here it is:
Lucas’ Reactions
• Behavioral response at Audi to sound emitted in his Right Ear-2 wks old
• Startled at Loud Shriek make by brother- 2 wks old
• Startled at Door being slammed- two separate times ~2 wks old
• Startled at chair being dragged across tile floor- ~3 weeks old
• Seemingly startled when he was waking up and I called his name- ~4/5 weeks
• Started crying immediately following talking on the phone from being fast asleep in his car seat- ~June 11th
• Seemed VERY overwhelmed in a loud restaurant- June 11th
• Started waking up when people started talking in the next room- no movement involved –June 12th
• Moaned right after dog shook his collar- June 12th
• Woke up completely when dogs barked at doorbell- June 12th
• Startled when the phone was on speakerphone and person on other end started talking – June 12th
• Unmuted loud tv while he was sleeping and he stirred immediately- 6/13/10
• Jingling dog collar and son throwing blocks into plastic bin woke him up- 6/13
• When sitting against my chest facing out, he looked up at me twice when I was calling his name- 6/17
• Blocks being thrown into plastic bin woke him up again- 6/17
• Woke up when I came into room talking 6/18
• Woke up when I came into room and shut door 6/18
• Son shrieking/throwing fit in car woke him up 6/19
• Woke up when I came into room and shut door 6/21
• Woke up when dog shook and jingled his collar 6/21
Here it is:
Lucas’ Reactions
• Behavioral response at Audi to sound emitted in his Right Ear-2 wks old
• Startled at Loud Shriek make by brother- 2 wks old
• Startled at Door being slammed- two separate times ~2 wks old
• Startled at chair being dragged across tile floor- ~3 weeks old
• Seemingly startled when he was waking up and I called his name- ~4/5 weeks
• Started crying immediately following talking on the phone from being fast asleep in his car seat- ~June 11th
• Seemed VERY overwhelmed in a loud restaurant- June 11th
• Started waking up when people started talking in the next room- no movement involved –June 12th
• Moaned right after dog shook his collar- June 12th
• Woke up completely when dogs barked at doorbell- June 12th
• Startled when the phone was on speakerphone and person on other end started talking – June 12th
• Unmuted loud tv while he was sleeping and he stirred immediately- 6/13/10
• Jingling dog collar and son throwing blocks into plastic bin woke him up- 6/13
• When sitting against my chest facing out, he looked up at me twice when I was calling his name- 6/17
• Blocks being thrown into plastic bin woke him up again- 6/17
• Woke up when I came into room talking 6/18
• Woke up when I came into room and shut door 6/18
• Son shrieking/throwing fit in car woke him up 6/19
• Woke up when I came into room and shut door 6/21
• Woke up when dog shook and jingled his collar 6/21
The CMV scare
When Lucas was almost 7 weeks old I took him to the doctor because he had been VERY fussy at night. Noah had done the same thing at that age, and had an ear infection, so I wanted to take Lucas in to get checked. Especially considering all the stuff that had been put in his ears recently.
Dr. Morneault (Dr. Miller only works Monday and Tuesday as he's partially retired, she sees his patients the rest of the week) checked his ears and said they looked great. I noticed her looking closely at his eyes, which were still a little bit yellow. He had been a little bit yellow up to that point, but it had faded quite a bit. I had read a bit on it, and figured he just had "breast feeding jaundice" which can last up to three months since no one was worried about it before then.
She said she wanted to test his jaundice levels just in case, since he was 7 weeks old, and make sure there was nothing else going on. That was fine with me, I'm all about being proactive. We went into the lab and the poor guy got his first heel prick. He did very well for it. The results came back higher then she would like, and she said it was most likely just breastfeeding jaundice, but she wanted me to take him back to the lab to get some more blood drawn so they could check his thyroid and for blood diseases. Little guy was a trooper again, and didn't even cry as they took four small tubes of blood.
We went home and I (stupidly) started to google "jaundice and hearing loss" and one of the first hits that came up was a link to "CMV" or Cytomeglavirus. I saw that it was in the herpes family (which was the first thing that freaked me out- I get cold sores ALL the time- which is cause by Herpes Simplex 1) and that it was a mostly silent infection. The research said that if a pregnant woman gets it for the first time in pregnancy it can have various side effects ranging from SEVERE (death to infant) to non-symptomatic. It said it was a leading cause of congenital hearing loss in infants. It also said that most infants that presented with symptoms of CMV at birth were likely to have vision problems and some mental retardation.
Hearing Lucas may be deaf, made me sad, and I shed a few tears, but this TERRIFIED me. The idea that he may not have his hearing, or his vision AND have some sort of mental disability was way more then I was expecting. All of a sudden I felt silly for saying "it could be worse", because we were faced with the possibility that it WAS worse. I called Norman (who was out of town in CA performing) and told him my fears. At that point the doctors hadn't said anything about it, but I was planning on asking them to test for CMV when I talked to them after the weekend.
I didn't end up needing to call them, as Dr. Miller called me on monday. He saw the original test results for his jaundice and said that because of that, and his hearing loss he wanted to test Lucas for CMV. This made me happy on one hand, but at the same time, more concerned to know that my fears that it was a possibility were valid. I went to the office that day and picked up a pee bag for Lucas to wear so that I could collect his urine the next day to bring in to the lab for testing.
I went in and they took the urine bag (poor guy it was stuck around his privates, but he didn't even cry when I removed it!) and then did a toe stick and took some more blood.
It was a long day that day, and I think the reality of testing for CMV and the stress of dealing with all this and everyday life alone (as Norman was still on the road) caught up with me. I put Lucas down on the playmat while I made Noah dinner and he was fussy. I looked over at him and noticed he was moving his head back and forth a lot and kind of jerkily. Since I was hyper aware of everything he was doing, I started researching jerky head movements in babies. My hope was to reassure myself it was normal, instead I freaked myself out SO bad. I ended up reading about some REALLY awful things, and convincing myself that Lucas was displaying sytoms of it. Of course, I had nursed him to sleep by then, so I magnified in my mind his symptoms. I was up until 4am that day having a royal meltdown and just praying that my baby would be ok and not end up with any horrible debilitating disabilities. I never thought it would be something I hoped for, but I was praying for JUST hearing loss at that point.
Thankfully, I then found a link to a post on a bulletin board talking about how all the women's babies on that board moved their heads like that all the time. (And really, I remember Noah doing it too- but I was not reasonable that night). When he woke up for his feeding at 3:30 that morning I completely unswaddled him and watched him startle like a normal baby, and felt better.
I was a wreck the next day, and decided that I couldn't do that to myself and the boys again. I have now COMPLETELY sworn off Dr. Google, if he was a real doctor he would have been sued for malpractice many many times by now!
I waited for the tests results to came back and just prayed he didn't have CMV. I didn't hear anything that week, and was going with the notion that no news was good news. I take Noah to gymnastics on tuesday morning and had a call come in while I was there that looked like a number from the doctor's office. I couldn't answer it then, but I heard the my voicemail alert. I got butterflies in my stomach, and once I got a chance went and checked it.
I heard it was Dr. Miller and my stomach dropped. Thankfully he said the words I had praying I would hear "The tests results came back, and everything looks good". He said that there was no trace of CMV in the urine test and that only my antibodies to CMV were found in the blood. He talked to the infectious disease doctor and she said the numbers were so small, it would not indicate an active CMV infection in pregnancy. To say I was relieved was an understatement!! It had been a very stressful couple of weeks, and I was so happy to have it end with positive news. It really made me realize even more that Lucas having hearing loss was really no big deal in the grand scheme of things!
Dr. Morneault (Dr. Miller only works Monday and Tuesday as he's partially retired, she sees his patients the rest of the week) checked his ears and said they looked great. I noticed her looking closely at his eyes, which were still a little bit yellow. He had been a little bit yellow up to that point, but it had faded quite a bit. I had read a bit on it, and figured he just had "breast feeding jaundice" which can last up to three months since no one was worried about it before then.
She said she wanted to test his jaundice levels just in case, since he was 7 weeks old, and make sure there was nothing else going on. That was fine with me, I'm all about being proactive. We went into the lab and the poor guy got his first heel prick. He did very well for it. The results came back higher then she would like, and she said it was most likely just breastfeeding jaundice, but she wanted me to take him back to the lab to get some more blood drawn so they could check his thyroid and for blood diseases. Little guy was a trooper again, and didn't even cry as they took four small tubes of blood.
We went home and I (stupidly) started to google "jaundice and hearing loss" and one of the first hits that came up was a link to "CMV" or Cytomeglavirus. I saw that it was in the herpes family (which was the first thing that freaked me out- I get cold sores ALL the time- which is cause by Herpes Simplex 1) and that it was a mostly silent infection. The research said that if a pregnant woman gets it for the first time in pregnancy it can have various side effects ranging from SEVERE (death to infant) to non-symptomatic. It said it was a leading cause of congenital hearing loss in infants. It also said that most infants that presented with symptoms of CMV at birth were likely to have vision problems and some mental retardation.
Hearing Lucas may be deaf, made me sad, and I shed a few tears, but this TERRIFIED me. The idea that he may not have his hearing, or his vision AND have some sort of mental disability was way more then I was expecting. All of a sudden I felt silly for saying "it could be worse", because we were faced with the possibility that it WAS worse. I called Norman (who was out of town in CA performing) and told him my fears. At that point the doctors hadn't said anything about it, but I was planning on asking them to test for CMV when I talked to them after the weekend.
I didn't end up needing to call them, as Dr. Miller called me on monday. He saw the original test results for his jaundice and said that because of that, and his hearing loss he wanted to test Lucas for CMV. This made me happy on one hand, but at the same time, more concerned to know that my fears that it was a possibility were valid. I went to the office that day and picked up a pee bag for Lucas to wear so that I could collect his urine the next day to bring in to the lab for testing.
I went in and they took the urine bag (poor guy it was stuck around his privates, but he didn't even cry when I removed it!) and then did a toe stick and took some more blood.
It was a long day that day, and I think the reality of testing for CMV and the stress of dealing with all this and everyday life alone (as Norman was still on the road) caught up with me. I put Lucas down on the playmat while I made Noah dinner and he was fussy. I looked over at him and noticed he was moving his head back and forth a lot and kind of jerkily. Since I was hyper aware of everything he was doing, I started researching jerky head movements in babies. My hope was to reassure myself it was normal, instead I freaked myself out SO bad. I ended up reading about some REALLY awful things, and convincing myself that Lucas was displaying sytoms of it. Of course, I had nursed him to sleep by then, so I magnified in my mind his symptoms. I was up until 4am that day having a royal meltdown and just praying that my baby would be ok and not end up with any horrible debilitating disabilities. I never thought it would be something I hoped for, but I was praying for JUST hearing loss at that point.
Thankfully, I then found a link to a post on a bulletin board talking about how all the women's babies on that board moved their heads like that all the time. (And really, I remember Noah doing it too- but I was not reasonable that night). When he woke up for his feeding at 3:30 that morning I completely unswaddled him and watched him startle like a normal baby, and felt better.
I was a wreck the next day, and decided that I couldn't do that to myself and the boys again. I have now COMPLETELY sworn off Dr. Google, if he was a real doctor he would have been sued for malpractice many many times by now!
I waited for the tests results to came back and just prayed he didn't have CMV. I didn't hear anything that week, and was going with the notion that no news was good news. I take Noah to gymnastics on tuesday morning and had a call come in while I was there that looked like a number from the doctor's office. I couldn't answer it then, but I heard the my voicemail alert. I got butterflies in my stomach, and once I got a chance went and checked it.
I heard it was Dr. Miller and my stomach dropped. Thankfully he said the words I had praying I would hear "The tests results came back, and everything looks good". He said that there was no trace of CMV in the urine test and that only my antibodies to CMV were found in the blood. He talked to the infectious disease doctor and she said the numbers were so small, it would not indicate an active CMV infection in pregnancy. To say I was relieved was an understatement!! It had been a very stressful couple of weeks, and I was so happy to have it end with positive news. It really made me realize even more that Lucas having hearing loss was really no big deal in the grand scheme of things!
Appointment with the ENT doctor
Friday rolled around and we met with the ENT doctor. I am horrible with names, and can't remember it right now! Anyway, he asked us a bunch of questions. Family history: has anyone in either family ever had hearing loss from birth? No. Illnesses: was I sick at all while pregnant? Did I have CMV? Were either of us sick after he was born? No.
I told him about the responses we had seen. He said that didn't seem all that loud (under the 85 decibel range). He had to leave for a second and came back with our audiologist. He said he wanted to repeat the ABR based off our history and the responses we had seen. I was skeptical we would get a different response since they had been consistant. I asked him if those tests were sometimes wrong and he said "absolutely". I asked him a few questions about cochlear implants (that I can't even remember now!) and we made the next appointment for a few weeks from then.
I decided that in that time I would just continue to research our options and information on cochlear implants. I wasn't going to get my hopes up.
I told him about the responses we had seen. He said that didn't seem all that loud (under the 85 decibel range). He had to leave for a second and came back with our audiologist. He said he wanted to repeat the ABR based off our history and the responses we had seen. I was skeptical we would get a different response since they had been consistant. I asked him if those tests were sometimes wrong and he said "absolutely". I asked him a few questions about cochlear implants (that I can't even remember now!) and we made the next appointment for a few weeks from then.
I decided that in that time I would just continue to research our options and information on cochlear implants. I wasn't going to get my hopes up.
1st Audiologist Appointment at Head and Neck Surgical
We took Lucas to his appointment with the new Audiologist when he was around 6 weeks old. For this we had to keep him awake and hungry for FOUR hours before his appointment. His appointment was 8am. They do this in the hopes that once you get there, you can feed the baby and they will pass right out, as they need them to be completely asleep for the tests. I felt like such a mean mommy! For the first couple of hours he was awake because I kept him up after his normal 4am feeding, but after that he was not a happy guy. He kept falling asleep in the car on the way in, and I was having a heck of a time keeping him awake!
We got there and we repeated the tests that were done at Northeast Hearing. She got the same "pass"/"refer" results. He was also nursing while she did the tests. He passed right out when he was done, but we had to move to another room for the next test. Then, when we got in there she had to clean his forhead and temples with alchohol wipes and then this little abrasive strips to ensure good contact with the electrodes. Of course this woke him right up and it took us a good 30 minutes to get him back to sleep! Finally I was able to get him to sleep on my chest again.
She placed two electrodes in the middle of his forehead above his nose, and one in front of each ear. Then she tested each ear one at a time with a small microphone she placed into his ears. I could hear some of the sounds, it was a bunch of clicking, whereas at Northeast it was more high pitched beeping. She tested him up to 85 decibles. After the test was done she told us she was not getting the response she would get from a normal hearing baby, and that based off the results of the test he has a severe to profound loss in both ears. She asked us if we were surprised by that result, and I told her not completely since he had had three tests he had failed so far (he did the hearing screen in the hospital twice), but that we had seen him respond to some sounds, so we didn't think his loss would be that severe. We had seen him jump when Noah shrieked, a door was slammed, and a chair was dragged across tile floor since our last appointment with Northeast.
That test was on a tuesday, and she made us an appointment to talk to the ENT doctor that Friday about the results and our options. She said we most likely would be going to Boston for further testing, and mentioned the possibility of Cochlear Implants to us.
I left feeling bummed out. I thought he probably had a loss because three responses in 4 weeks aren't great odds, but I was hoping it was on a more moderate scale. Still, I was glad it wasn't something worse. I went home and started looking up resources for deaf children and their families in the state of Maine and was very pleasantly surprised by home much we have available to us.
We got there and we repeated the tests that were done at Northeast Hearing. She got the same "pass"/"refer" results. He was also nursing while she did the tests. He passed right out when he was done, but we had to move to another room for the next test. Then, when we got in there she had to clean his forhead and temples with alchohol wipes and then this little abrasive strips to ensure good contact with the electrodes. Of course this woke him right up and it took us a good 30 minutes to get him back to sleep! Finally I was able to get him to sleep on my chest again.
She placed two electrodes in the middle of his forehead above his nose, and one in front of each ear. Then she tested each ear one at a time with a small microphone she placed into his ears. I could hear some of the sounds, it was a bunch of clicking, whereas at Northeast it was more high pitched beeping. She tested him up to 85 decibles. After the test was done she told us she was not getting the response she would get from a normal hearing baby, and that based off the results of the test he has a severe to profound loss in both ears. She asked us if we were surprised by that result, and I told her not completely since he had had three tests he had failed so far (he did the hearing screen in the hospital twice), but that we had seen him respond to some sounds, so we didn't think his loss would be that severe. We had seen him jump when Noah shrieked, a door was slammed, and a chair was dragged across tile floor since our last appointment with Northeast.
That test was on a tuesday, and she made us an appointment to talk to the ENT doctor that Friday about the results and our options. She said we most likely would be going to Boston for further testing, and mentioned the possibility of Cochlear Implants to us.
I left feeling bummed out. I thought he probably had a loss because three responses in 4 weeks aren't great odds, but I was hoping it was on a more moderate scale. Still, I was glad it wasn't something worse. I went home and started looking up resources for deaf children and their families in the state of Maine and was very pleasantly surprised by home much we have available to us.
Audiologist Appointment at Northeast Hearing and Speech
We had the second hearing screening at Northeast Hearing and Speech when Lucas was two weeks old. I hadn't seen any response to sound in that time, so wasn't feeling all that encouraged about it. I was hoping for the best, but preparing to get news I wasn't hoping for.
We got there and brought Lucas into their little hearing test booth. We had Noah with us as we didn't have a baby sitter, and it was obvious right away Norman and Noah would have to wait in the waiting room because the testing is supposed to be done in a quiet environment. There is nothing quiet about my two year old! They left, I was a little dissapointed because I knew Norman wanted to be there too, but that's life with two kids! I held Lucas on my chest while he was sleeping and she placed a little microphone in each ear one at a time. The first test was to check for fluid in his middle ear, it came back as clear. So that meant if he did have hearing loss, it wasn't due to any left over birth fluid. The second test sends sound down into the inner ear, and it records any sound that is echoed back by the hair cells. It gives a "pass" or "refer" anylasis. Apparently his kept coming back as "pass"/"refer"/"pass"/"refer". She said she wasn't able to get it to repeat, so we would have to go for further testing.
However, while she was sending the sound down into his ear, he stirred when it started (I could hear it since he was on my shoulder/chest). She said that even though the test didn't pick it up, she did see a "behavioural" response to the sound. She said she wasn't able to tell me how much hearing he had based on her tests. I asked her if that meant he probably had *some* hearing and wasn't completely lacking it, and she said Yes, probably.
We left the appointment dissapointed but feeling a bit encouraged over the "behavioural" response we saw.
We got there and brought Lucas into their little hearing test booth. We had Noah with us as we didn't have a baby sitter, and it was obvious right away Norman and Noah would have to wait in the waiting room because the testing is supposed to be done in a quiet environment. There is nothing quiet about my two year old! They left, I was a little dissapointed because I knew Norman wanted to be there too, but that's life with two kids! I held Lucas on my chest while he was sleeping and she placed a little microphone in each ear one at a time. The first test was to check for fluid in his middle ear, it came back as clear. So that meant if he did have hearing loss, it wasn't due to any left over birth fluid. The second test sends sound down into the inner ear, and it records any sound that is echoed back by the hair cells. It gives a "pass" or "refer" anylasis. Apparently his kept coming back as "pass"/"refer"/"pass"/"refer". She said she wasn't able to get it to repeat, so we would have to go for further testing.
However, while she was sending the sound down into his ear, he stirred when it started (I could hear it since he was on my shoulder/chest). She said that even though the test didn't pick it up, she did see a "behavioural" response to the sound. She said she wasn't able to tell me how much hearing he had based on her tests. I asked her if that meant he probably had *some* hearing and wasn't completely lacking it, and she said Yes, probably.
We left the appointment dissapointed but feeling a bit encouraged over the "behavioural" response we saw.
Tuesday, June 8, 2010
April 25th, 2010
Lucas was born on April 24th 2010 at 2:11 am. We weighed 7lbs 9 oz and was 20.5" long. He came flying into this world (and was nearly born on the toilet). I thought (and still do) he was absolutely perfect. He nursed like a champ 30 mins after he was born and hasn't stopped yet, and has a mellow sweet personality. The first 24 hours I was blissfully unaware of the upcoming news I would receive, and just basked in the sweet newborn smell and cuddles.
He went to the nursery the night of the 24th for all the testing they do, the hearing test being one of them. The morning of the 25th, I was in the hospital by myself (Norman hadn't arrived yet) when the pedi came in to check him like he did the morning before. He checked his vitals, said he looked great, and then told me the nurses had marked on his chart that they needed to speak to him. He asked me if I knew what it was about, but no one had said anything to me and I told him that. He said it was probably nothing, but he'd go check and come back if he needed to tell me anything.
I wondered what it could be, thought maybe he was a little jaundiced or something, but figured since no one had said anything to me it was probably no big deal. The hearing test never even crossed my mind. He came back in 20 minutes later with a serious look on his face. He gently informed me that he had failed his hearing test in both ears. I was totally dumbstruck. What do you say to that? He told me that sometimes there are false positives, but it was a little concerning that both ears failed. I tried to listen to what he was saying, but my mind was spinning. I asked him if there was a "level" of failure, ie he failed by a lot or a little. He said he didn't know. He said that Lucas would be retested in a couple of weeks at an Audiologist. He said he was sorry to be the bearer of bad news, and that was it.
I kept a strong front when he was in the room, but cried a bit when I called Norman to tell him the news. We were both obviously upset with the news, but we both knew it could have been something so much worse. I of course turned to Dr. Google and started looking up failed newborn test results. Apparently it happens more often then you would think. Often times it's because their ears still have birth fluids in them that block the test. I was hoping this was the case, but had a feeling it wasn't. I started snapping my fingers in his ears as soon as the Doctor left and got no response. I also had noticed the night before when his big brother Noah was visiting that he didn't wake up or startle at all when he was loud. I just brushed it off then as that amazing ability newborns have to sleep through anything. After Noah went home I did have the fleeting thought that maybe Lucas couldn't hear, but quickly discarded it. I didn't even remember I had thought that until after the Doctor came back to tell me he failed.
We went through a range of emotions while we were in the hospital. Extreme joy over the birth of our amazing new little boy, and sadness and uncertainty over the state of his hearing, to relief that the news wasn't worse. His regular pediatrician, Dr. Miller, who was both my husband and I's doctor when we were children, checked him over on the day of check out. He was sad to hear the results of the screening, but also very encouraging about how many options children with hearing loss have today. He told us he would be contacting me with an appointment at an Audiologist for sometime in the next couple of weeks for a follow up screening. The hope was still that it was just fluid stuck in his ear from his speeding birth.
The Reason
I decided to start writing this blog after my second born son, Lucas Jason, failed multiple hearing tests in both ears. We are currently in the process of finding out what exactly is going on, and what our course of action is going to be. I hope it will be helpful for me to write out my feelings and document everything that has already gone on, and has yet to come.
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