So we are back from our first week of Pre-Implant Therapy. I spent the week studying the ear and rattled off how the ear works when we hear..to include the names of the bones that conduct sound as it passes through to the cochlea.....blah, blah, blah. Anything to get on with this process! We covered the ear, the types of hearing aids and implants, the types of communication, different kinds of hearing loss...audiograms.., what the parents roles are for therapy...standard stuff. I knew about 95% of what she told me and picked up some new information as well which I found really interesting. If you have never studied what the ear/ brain does to understand sounds and speech you should check it out. IT is really amazing and something I know that I take for granted.
It looks like the hold up on our end will be Insurance approval which can take up to 30 days... I will start calling them as soon as they submit the paperwork. My plan is to become Tim Robbins from Shawshank Redemption and call them constantly until they move us along. If everything goes as planned we could have at least one ear done by July and hopefully both.
We will be heading back next week for more parent education. I do love her therapist. Molly is in good hands. As soon as I graduate from Cochlear Implant Therapy class we will be heading back into therapy with her original local therapist who is also really good...and we will stay with her until they force us back to Birmingham.
Thursday, March 19, 2009
Wednesday, March 11, 2009
Day Two - Speech Eval in Birminham.
Well, what a crazy day. I had to get all the kids up, fed, dressed and out the door by 6:45 so that I could jump on the road to Birmingham by 9am. Those who have ever seen Jack, my five year old, in the morning know that is is not an easy task. However, we managed to get it done and I arrived for our speech evaluation 5 minutes before our appointment. I wont even mention the number of laws I broke in order to get there on time.
The speech eval was mostly questions about her development in all areas...speech included. Both Speech Therapists thought that Molly was exceptionally bright and cognitively right on track. Any delays she had in other areas were solely due to her not being able to hear. They hold out great hope for what the implant will do for her and while they cant assure me of the level of success she will have, they feel that shooting for mainstream kindergarten is not something that is too far fetched.
So we left knowing that the next step was a few months ( three to four ) of pre implant therapy. That means we have to agree to bring Molly to Birmingham once a week until the parents know everything that the therapists and doctors want them to know. This process usually takes three or four months. However, due to the number of hurdles and struggles we faced in trying to get her in and tested I had already studied the different types of hearing loss, am well versed in reading an audiogram... ( at least good enough for someone who isnt a speech therapist or audiologist), know the type of hearing loss Molly has and how to describe how a person hears complete with drawing a diagram of the outer, middle and inner ear. I guess I figure if I had to know enough to do eye surgery in order to fly nights in flight school I may as well become an expert on the anatomy and function of the ear. All of this information is what they are looking for the parents to know prior to surgery and I think I proved that today. I've also reasearched the two different types of implants that Childrens South offers and what makes an implant different than a hearing aide. So after throwing all of that out there, the therapist I spoke to said that she thought I would probably be able to go through their checklist in 6 weeks. I am determined to do it faster than that!
Once I got home, the therapist called to let me know that all the slots for therapists were full and that they thought that based on the information I already had that I would be able to wrap up pre implant therapy in about three weeks. So we went from three to four months to three weeks and I couldn't be happier. Finally the system is working for us...not against us. Im thrilled. But I will be studying like crazy for the next three weeks in order to learn and commit to memory everything I need to know in order to speed this process along. Once the therapy is complete, we will get a CT scan of Molly's ears, and then meet with the Doctor doing the surgery. We are attempting to get the insurance to approve a bilateral implantation... basically meaning an implant on both sides. Because our doctor doesn't like doing both at the same time, we will have to actually have TWO surgeries to get this done.
Im hoping that we will spend the next month in pre- implant therapy, than another two or three weeks getting CT scans and meeting with the doctor, than another two or three weeks for the insurance approval....so three months before her first surgery. In the meantime we will travel to Birmingham for therapy and continue our therapy here with our local AV therapist as well. If things go as planned, Molly should have both implants in, turned on, and mapped before school starts in August!
Our first therapy session is next Thursday. Here we go! Another step closer to the Implant process.
The speech eval was mostly questions about her development in all areas...speech included. Both Speech Therapists thought that Molly was exceptionally bright and cognitively right on track. Any delays she had in other areas were solely due to her not being able to hear. They hold out great hope for what the implant will do for her and while they cant assure me of the level of success she will have, they feel that shooting for mainstream kindergarten is not something that is too far fetched.
So we left knowing that the next step was a few months ( three to four ) of pre implant therapy. That means we have to agree to bring Molly to Birmingham once a week until the parents know everything that the therapists and doctors want them to know. This process usually takes three or four months. However, due to the number of hurdles and struggles we faced in trying to get her in and tested I had already studied the different types of hearing loss, am well versed in reading an audiogram... ( at least good enough for someone who isnt a speech therapist or audiologist), know the type of hearing loss Molly has and how to describe how a person hears complete with drawing a diagram of the outer, middle and inner ear. I guess I figure if I had to know enough to do eye surgery in order to fly nights in flight school I may as well become an expert on the anatomy and function of the ear. All of this information is what they are looking for the parents to know prior to surgery and I think I proved that today. I've also reasearched the two different types of implants that Childrens South offers and what makes an implant different than a hearing aide. So after throwing all of that out there, the therapist I spoke to said that she thought I would probably be able to go through their checklist in 6 weeks. I am determined to do it faster than that!
Once I got home, the therapist called to let me know that all the slots for therapists were full and that they thought that based on the information I already had that I would be able to wrap up pre implant therapy in about three weeks. So we went from three to four months to three weeks and I couldn't be happier. Finally the system is working for us...not against us. Im thrilled. But I will be studying like crazy for the next three weeks in order to learn and commit to memory everything I need to know in order to speed this process along. Once the therapy is complete, we will get a CT scan of Molly's ears, and then meet with the Doctor doing the surgery. We are attempting to get the insurance to approve a bilateral implantation... basically meaning an implant on both sides. Because our doctor doesn't like doing both at the same time, we will have to actually have TWO surgeries to get this done.
Im hoping that we will spend the next month in pre- implant therapy, than another two or three weeks getting CT scans and meeting with the doctor, than another two or three weeks for the insurance approval....so three months before her first surgery. In the meantime we will travel to Birmingham for therapy and continue our therapy here with our local AV therapist as well. If things go as planned, Molly should have both implants in, turned on, and mapped before school starts in August!
Our first therapy session is next Thursday. Here we go! Another step closer to the Implant process.
Tuesday, March 10, 2009
Not just power aids...super power aids..
Okay...so back from our first trip to Birmingham this week. Unfortunately, we are headed back tomorrow for the speech eval. I was hoping that we could take care of the speech eval over the phone. Molly knows several words....but can only really say three or four...why drive all the way to Birmingham for that? But alas, we are headed back.
But first, our appointment today. They put her back in the booth and her results were very consistent with the results from her last unaided exam...in fact they were 5 to 10 db worse. Honestly, if aided results are not where she needs to be to get her the best possible hearing, Im all for her having some bad results if that means it will help her qualify for the implant. What the audiologist determined was that her hearing was severe to profound and that she needed new hearing aids. The ones she has had all this time, even cranked up, were not going to help her so they told me that she needed "super power hearing aids". The aids she had were just "power aids". Tim the tool man would be proud. I actually put one up to my ear and WOOOOZZZIE.... it is LOUD! Much louder than her last set. Goodness! Have I noticed a difference yet...not yet...but she is so smart and so able to communicate with out her hearing, that Im not really sure she realizes that she can hear a bit better.
The next test was the aided exam and what this showed us was that it did improve her results but not enough to where we would be comfortable with her living day to day. The best we could hope for her aided was one or two word sentences and a dependency on sign and reading lips. We aim to shoot a little higher for our girl. If you know anything about the speech banana ( and some of you reading this will). She registered at the bottom of the speech banana at all frequencies except the higher frequencies which didn't register AT ALL! So words like hat, pat, sat...would all sound the same to her unless she was reading lips.
That pretty much settles it for us then...on to the Implant process. We will start our speech appointments tomorrow and they will continue weekly up to a year. After we understand all they want us to know about the implant process, we will be scheduled for a CT scan where they will take a look at her ears to make sure she can even hold an implant. Every thing we have seen from her so far looks good so Im really not concerned with this part of the process. Then we meet with the doctor and schedule the surgery. We are looking at bilateral implants which means the doctor will implant one and then a few weeks later, implant the other. After a few weeks pass and the swelling goes down, they will turn the implants on and then the mapping process takes place. This takes weeks and weeks and will continue until they feel they have all the levels set appropriately for each frequency. All this time we will be having weekly speech sessions that I hope to have moved back to Huntsville by this time... but we really have to take this one step at a time. This is the beginning of a very, very, very long road. Step one was today...step two ...tomrrow...ugh.
But first, our appointment today. They put her back in the booth and her results were very consistent with the results from her last unaided exam...in fact they were 5 to 10 db worse. Honestly, if aided results are not where she needs to be to get her the best possible hearing, Im all for her having some bad results if that means it will help her qualify for the implant. What the audiologist determined was that her hearing was severe to profound and that she needed new hearing aids. The ones she has had all this time, even cranked up, were not going to help her so they told me that she needed "super power hearing aids". The aids she had were just "power aids". Tim the tool man would be proud. I actually put one up to my ear and WOOOOZZZIE.... it is LOUD! Much louder than her last set. Goodness! Have I noticed a difference yet...not yet...but she is so smart and so able to communicate with out her hearing, that Im not really sure she realizes that she can hear a bit better.
The next test was the aided exam and what this showed us was that it did improve her results but not enough to where we would be comfortable with her living day to day. The best we could hope for her aided was one or two word sentences and a dependency on sign and reading lips. We aim to shoot a little higher for our girl. If you know anything about the speech banana ( and some of you reading this will). She registered at the bottom of the speech banana at all frequencies except the higher frequencies which didn't register AT ALL! So words like hat, pat, sat...would all sound the same to her unless she was reading lips.
That pretty much settles it for us then...on to the Implant process. We will start our speech appointments tomorrow and they will continue weekly up to a year. After we understand all they want us to know about the implant process, we will be scheduled for a CT scan where they will take a look at her ears to make sure she can even hold an implant. Every thing we have seen from her so far looks good so Im really not concerned with this part of the process. Then we meet with the doctor and schedule the surgery. We are looking at bilateral implants which means the doctor will implant one and then a few weeks later, implant the other. After a few weeks pass and the swelling goes down, they will turn the implants on and then the mapping process takes place. This takes weeks and weeks and will continue until they feel they have all the levels set appropriately for each frequency. All this time we will be having weekly speech sessions that I hope to have moved back to Huntsville by this time... but we really have to take this one step at a time. This is the beginning of a very, very, very long road. Step one was today...step two ...tomrrow...ugh.
Thursday, February 19, 2009
Hearing Eval...an update
Wow...well, it is official. I suck at the blogging thing. It has been over a month and if you are a follower of this blog, well Im sure you have moved on by now. Sorry...but this is one overwhelmed mother of three and because the blog cant sit around and whine for chocolate milk or ding dongs for breakfast, the blog gets ignored. Its a people's choice award really...and the blog loses...every time.
So we finally...three months after getting Molly home have an idea...a good idea of where her hearing is...or her non hearing more like it. After three months, phone calls, waiting, etc we know how bad her hearing is. Molly is deaf. Not just a little hard of hearing ( which frankly I had thought that maybe she was) but full on, full tilt, severely deaf. We had an INCREDIBLE experience with two fantastic audiologists who felt very good about Molly's reactions to the hearing test and think that Molly is about an 95db in the right ear and 85 in the left. What that means is that a sound has to be at least 85-95 db for Molly to hear it. While that may sound loud, it really isnt THAT loud per se. A whisper in a library is about 30db and a normal conversation is about 60db. That is of course, unaided. We would have checked for aided hearing, except the genius in Birmingham who did the first eval set her aids way to low for her so it wouldnt do us any good until we get them reset. I was very nervous as she was tested... I became a stage mom almost willing Molly to hear that beeping sound that was so easy for me to hear. Come on! Come on! Point to the mechanical duck! It was the ACT all over again!
So what does that mean for her future. It means that we will begin the looooong, arduous process for Cochlear Implants. There are many evaluations left to do and it also means that I will be burning up the roads to Birmingham once a week for tests and evaluations...but we do believe that this will give Molly the best possible future and so away we go.
It is kind of bitter sweet actually...the deafness. We are thrilled to finally have the answers to some of our questions...but wouldnt have minded if the audiologist had said.. Oh wait...I have seen this deafness before, here...give her this pill and she will have completely normal hearing in just 10-12 minutes." And am I thrilled about returning to Birmingham...NO...but we will do what we need to do.
As far as the type of hearing loss she was diagnosed with - it is sensori-neural hearing loss. Meaning that the tiny little hairs in the Cochlear of the ear either do not exist, are somewhat missing, or just flat out dont work. Bummer that they cant fix that...but the implant will help. Where is the hair club for men when we need them? We dont know what kind of lifestyle Molly will enjoy with the implant nor do we really grasp the amount of work it will take to catch her up on her language deficit...but she is soooo smart...all things look good for her.
Well, it is time to shower and head off to Audio/verbal therapy. I am in a hockey induced fog this morning and have got to clean my house before Child Protective Services takes all three kids away...not that I wouldnt enjoy the break!
So we finally...three months after getting Molly home have an idea...a good idea of where her hearing is...or her non hearing more like it. After three months, phone calls, waiting, etc we know how bad her hearing is. Molly is deaf. Not just a little hard of hearing ( which frankly I had thought that maybe she was) but full on, full tilt, severely deaf. We had an INCREDIBLE experience with two fantastic audiologists who felt very good about Molly's reactions to the hearing test and think that Molly is about an 95db in the right ear and 85 in the left. What that means is that a sound has to be at least 85-95 db for Molly to hear it. While that may sound loud, it really isnt THAT loud per se. A whisper in a library is about 30db and a normal conversation is about 60db. That is of course, unaided. We would have checked for aided hearing, except the genius in Birmingham who did the first eval set her aids way to low for her so it wouldnt do us any good until we get them reset. I was very nervous as she was tested... I became a stage mom almost willing Molly to hear that beeping sound that was so easy for me to hear. Come on! Come on! Point to the mechanical duck! It was the ACT all over again!
So what does that mean for her future. It means that we will begin the looooong, arduous process for Cochlear Implants. There are many evaluations left to do and it also means that I will be burning up the roads to Birmingham once a week for tests and evaluations...but we do believe that this will give Molly the best possible future and so away we go.
It is kind of bitter sweet actually...the deafness. We are thrilled to finally have the answers to some of our questions...but wouldnt have minded if the audiologist had said.. Oh wait...I have seen this deafness before, here...give her this pill and she will have completely normal hearing in just 10-12 minutes." And am I thrilled about returning to Birmingham...NO...but we will do what we need to do.
As far as the type of hearing loss she was diagnosed with - it is sensori-neural hearing loss. Meaning that the tiny little hairs in the Cochlear of the ear either do not exist, are somewhat missing, or just flat out dont work. Bummer that they cant fix that...but the implant will help. Where is the hair club for men when we need them? We dont know what kind of lifestyle Molly will enjoy with the implant nor do we really grasp the amount of work it will take to catch her up on her language deficit...but she is soooo smart...all things look good for her.
Well, it is time to shower and head off to Audio/verbal therapy. I am in a hockey induced fog this morning and have got to clean my house before Child Protective Services takes all three kids away...not that I wouldnt enjoy the break!
Thursday, January 15, 2009
Speech and other things..
So not a lot to report of any real significance. The China blog was so full of these huge firsts and monumental events that I tend not to blog when we have just a normal day...but a normal day is something monumental in itself, isnt it? Just being able to say that a day was just an average day with a little girl who has known three mothers in just 2.5 years is something..so in honor of Jerry Seinfeld...lets hear it for days about NOTHING!
We got up today after a great scrimmage on the ice last night....it is always interesting when Rob and I are on different sides of the ice and makes for some interesting stories when we end up fighting over a puck in the corner. Dont all married couples chase after each other on the ice and hit each other with sticks?
Both boys are off to school and we went to Molly's speech therapy session. She did a great job and is reacting to more and more sound..sounds I didnt think she could hear, well, she can and we have seen just over the past three weeks that she is figuring out "how" to listen. I dont know where her hearing level is unaided...but aided she is doing great and her speech therapist thinks the best thing for her is to get her in a mainstream preschool. Of course, we still need to hear from an audiologist and ENT...but I am continually amazed at what Molly can hear sometimes. I sure wish I knew what her hearing level was! Maybe one day!
We did find the perfect preschool for her at a local church...and will go by and see about securing her a spot for a few days a week in the fall.
Well, thats about it. Molly is wrapping up her nap and the boys have escaped to go play at the neighbors. I am going to wrap up cleaning the house and perhaps sneak out tonight for some pick up hockey!
Here's to a day about NOTHING! Didnt think we would have reached "normal" as fast as we seem to have!
We got up today after a great scrimmage on the ice last night....it is always interesting when Rob and I are on different sides of the ice and makes for some interesting stories when we end up fighting over a puck in the corner. Dont all married couples chase after each other on the ice and hit each other with sticks?
Both boys are off to school and we went to Molly's speech therapy session. She did a great job and is reacting to more and more sound..sounds I didnt think she could hear, well, she can and we have seen just over the past three weeks that she is figuring out "how" to listen. I dont know where her hearing level is unaided...but aided she is doing great and her speech therapist thinks the best thing for her is to get her in a mainstream preschool. Of course, we still need to hear from an audiologist and ENT...but I am continually amazed at what Molly can hear sometimes. I sure wish I knew what her hearing level was! Maybe one day!
We did find the perfect preschool for her at a local church...and will go by and see about securing her a spot for a few days a week in the fall.
Well, thats about it. Molly is wrapping up her nap and the boys have escaped to go play at the neighbors. I am going to wrap up cleaning the house and perhaps sneak out tonight for some pick up hockey!
Here's to a day about NOTHING! Didnt think we would have reached "normal" as fast as we seem to have!
Tuesday, January 13, 2009
Not a lot to report...
So we have settled on using Children's Rehabilitation Services here in Huntsville and are now engaged in the arduous process of enrolling in the system. Dont know how long that will take...but we do know the audiologist we will be working with comes highly recommended so I feel good about following whatever road she wants us to take. We will also have access to a highly sought after ENT and so maybe once we get in the system, we will have a crack at an ABR. Every speech therapist and audiologist I have spoken too besides the first one we saw in Birmingham has recommended that we push for the ABR based on Molly's age and background. Once we figure out where her hearing is we will be able to make a decision on whether or not we want to pursue the Cochlear Implant or just get her the best hearing aids we can get our hands on!
Other than that, we are just settling into our new life. We had a disappointment with the Chargers loss this past weekend. Of course, I have been a Steelers fan ( albeit not a very vocal one for the past 10 years or so) since I was a kid so I wasn't too upset.
We spent this past Saturday at the aquarium in Chattanooga and then Sunday Rob and I had a hockey game. It was nice getting on the ice before 9pm. I am always so "amped" up after a game that it takes me hours to relax enough to go to sleep. With a late game, that can sometimes put me in bed way after 1am. The boys are full swing back in school and Molly has become obsessed with Jacks big music show. It is the only show she likes. I don't know why? There are plenty of kids shows that have as much music...but she likes that one. So be it.
Other than that, we are patiently waiting for the end of winter..not that we have a real winter compared to most but it will be nice once we can play outside without Molly getting too cold. She has put on about 5 pounds since we got her home just under 2 months ago and so we are pleased. Yesterday would have been her birthday if we hadn't changed her birthday to a more suitable date. So we have a few more months to figure out how Molly should celebrate her first birthday.
She has been to two speech sessions and they have gone well. I dont know how long her patients will last with the games that the speech therapist wants to play. She is already starting to show signs of being annoyed with them..and frankly, I dont blame her. She is saying a few words now. Mom, Dad ( which sounds more like agh -agh instead of da-da), more, and baby. It truly is like having a 5 month old in a 2.5 year old body.
We hope to get into the see the next audiologist in February. So we wait...and we wait.
Other than that, we are just settling into our new life. We had a disappointment with the Chargers loss this past weekend. Of course, I have been a Steelers fan ( albeit not a very vocal one for the past 10 years or so) since I was a kid so I wasn't too upset.
We spent this past Saturday at the aquarium in Chattanooga and then Sunday Rob and I had a hockey game. It was nice getting on the ice before 9pm. I am always so "amped" up after a game that it takes me hours to relax enough to go to sleep. With a late game, that can sometimes put me in bed way after 1am. The boys are full swing back in school and Molly has become obsessed with Jacks big music show. It is the only show she likes. I don't know why? There are plenty of kids shows that have as much music...but she likes that one. So be it.
Other than that, we are patiently waiting for the end of winter..not that we have a real winter compared to most but it will be nice once we can play outside without Molly getting too cold. She has put on about 5 pounds since we got her home just under 2 months ago and so we are pleased. Yesterday would have been her birthday if we hadn't changed her birthday to a more suitable date. So we have a few more months to figure out how Molly should celebrate her first birthday.
She has been to two speech sessions and they have gone well. I dont know how long her patients will last with the games that the speech therapist wants to play. She is already starting to show signs of being annoyed with them..and frankly, I dont blame her. She is saying a few words now. Mom, Dad ( which sounds more like agh -agh instead of da-da), more, and baby. It truly is like having a 5 month old in a 2.5 year old body.
We hope to get into the see the next audiologist in February. So we wait...and we wait.
Wednesday, January 7, 2009
Second part of the Check up
Okay, so back to the Children's International Adoption Clinic today where we did a preliminary speech eval. ( didn't really find out anything that we didnt know) Molly is indeed deaf and does not speak English. Alrighty then..nothing new there. All her lab work came back completely normal and within limits and the vaccines that she had received in China were all good. She didn't have that many of them so we will be catching up on vaccines starting in the next week or so.
What we did determine is that Molly is closer to 2 and a half years of age and so we are going to give her a birth date that reflects that but also has some meaning. You see, the original birth date that was given to her was just a random date picked by the doctor on duty when they found her. The day was just plucked from the air. We decided that we would choose a day that had meaning to us and hopefully one day to her...the day we found out about her. This is the day that I called the agency and wound up getting Molly's pictures sent to me and Rob and I decided that she was the one. August 20. It also gives us options as far as starting school and that is a key benefit as well.
We did not really address the hearing issue but I have been making some phone calls and did get hooked up with a local agency that will give me access to a phenomenal audiologist as well as a really fantastic ENT. This is probably where we should have started but I took the advice of a very well meaning doctor and went straight to Birmingham...oh well, live and learn. It will probably be February before we can get in to see the audiologist...so until then we will continue to go to Audio/ Verbal therapy and continue to exercise Molly's brain, ears, and speech.
Thats really all the updates we have for now. Molly is doing better every day and yesterday was actually the first day that she didnt wake up and immediately ask for food. She still eats an incredible amount of food and actually put on almost an entire pound since her last trip to Birmingham just about a month ago...about 4 or 5 pounds total since we got her on November 9. The weight looks good on her! When we first brought her home she would eat and then within minutes go stand by the pantry and just beg for food. She doesn't do that anymore! She is actually trying to talk to us and repeat words...but they sound nothing like what she is trying to say...but we give her an A for effort!
What we did determine is that Molly is closer to 2 and a half years of age and so we are going to give her a birth date that reflects that but also has some meaning. You see, the original birth date that was given to her was just a random date picked by the doctor on duty when they found her. The day was just plucked from the air. We decided that we would choose a day that had meaning to us and hopefully one day to her...the day we found out about her. This is the day that I called the agency and wound up getting Molly's pictures sent to me and Rob and I decided that she was the one. August 20. It also gives us options as far as starting school and that is a key benefit as well.
We did not really address the hearing issue but I have been making some phone calls and did get hooked up with a local agency that will give me access to a phenomenal audiologist as well as a really fantastic ENT. This is probably where we should have started but I took the advice of a very well meaning doctor and went straight to Birmingham...oh well, live and learn. It will probably be February before we can get in to see the audiologist...so until then we will continue to go to Audio/ Verbal therapy and continue to exercise Molly's brain, ears, and speech.
Thats really all the updates we have for now. Molly is doing better every day and yesterday was actually the first day that she didnt wake up and immediately ask for food. She still eats an incredible amount of food and actually put on almost an entire pound since her last trip to Birmingham just about a month ago...about 4 or 5 pounds total since we got her on November 9. The weight looks good on her! When we first brought her home she would eat and then within minutes go stand by the pantry and just beg for food. She doesn't do that anymore! She is actually trying to talk to us and repeat words...but they sound nothing like what she is trying to say...but we give her an A for effort!
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