First, allow me to clarify what I meant about how thinking about AJ's future is painful. It is not ALL painful. But the detour is initially painful. You know, your drivin' along and suddenly are faced with a detour? Some frustration sets in and perhaps a slight bit of panic as to where is blue blazes this detour is going to take you, as well as whether or not you'll arrive at your destination on time because of this blasted detour. Does this sound familiar?
I think what was the most painful was changing the mindset. Our journey has not been classic. I prefer to think of it as unique. But there have been serious moments of pain when you realize your child will not be sitting on that bar stool at a college bar with his friends, or any other of the myriad of classic moments in a child's life. The process of changing your mindset is painful. But here's the thing: I don't care about that anymore. AJ will be AJ and his life will be full and enjoyable. We'll do whatever it is he needs/wants. I worry more about the logistics of this new road of a life-time of care for him. I know his life will be outstanding. No doubt.
So, moving on to the ups...
AJ saw his GI doctor in August. It was so hard for me to believe that he hadn't been there in a year. First stop, weight. 31.5 lbs. Woot Woot! Second stop, the room with a view. I secretly hope each time we visit the GI clinic that we get this one specific room that has a whole wall that is a window. And then, AJ was discharged. Say what? I was in complete shock. AJ? He was busy playing with the otoscope which, why do they have an otoscope at the GI? Anyway, they feel he is doing so well there is nothing else they can do for him, other than what we keep doing. Last year they were a bit concerned about his calcium intake, but since he's now drinking white milk, and loves all sorts of dairy products, they aren't concerned. On the days where milk isn't his choice, we give him a Tums. Yeah, and he eats it. He's growing like a weed, so I wouldn't be surprised if he's now around the 33lb mark. Way to go buddy!
During the first week of school we had AJ's private feeding therapist come in and do a consult with AJ's school staff. I was there too. The week prior, I had witnessed him eating in the cafeteria. Woah. Sensory overload and HOLY LOUD. Yep, I'm that mom that walks around her kids school with her cell phone out. Really, I have a purpose. I'm checking to see how loud things are. After watching him, I immediately stated to his staff that he cannot eat in here. He's now eating upstairs in a classroom with friends. His whole entire demeanor has changed, his behaviors are slim to none, and he's not on sensory overload, so he actually eats his food. The staff is very comfortable with AJ's eating style. This brings me a HUGE amount of relief. He has a current Feeding Plan on file. I am one happy momma.
A few weeks ago I had AJ's CI processors tweaked. It's been awesome. Now that we are aware of how loud certain environments are for him, things make so much more sense. He's no longer hating his CIs. That's truly the best way I can describe it. His audiologist tweaked his sensitivity, which has been sooooo awesome. He's been doing well at school, but still prefers only one ear on the majority of the time. We saw AJ's audiologist last week-she wanted to know who this kid was in front of her. When she came out to get us, he was in the middle of putting his coil back ON himself because he know he was missing out on sound. Holy awesomeness. He was much calmer during the appointment and when he wandered into the soundbooth, we followed. He sat on my lap, with one of the audi's in front of us, while the other was behind the window running the testing. I haven't been in the booth with him for a very, very long time. He's never just sat in my lap. His audi didn't even need toys to distract him. After I had said that anything over 70dB causes him to take a coil off, we started there, testing several frequencies. He responded to the VRA-WHOA. He lasted about 10 minutes, which was amazing for him. They also tested higher dB's and at mid-frequency, he responded at 30dB bilaterally. Woot woot!!!! We called that a success and got out of there before things got ugly! His audi ended up tweaking the sensitivity just a little bit more. Like, a smidge. We're giving him 2-3 weeks to adjust and then we'll go from there. I'm determined to keep on top of this. It is SO COOL to see him put his own CIs on because he wants to hear. That is a cochlear implant parents DREAM come true.
I've had to raise the swings on our swingset twice. I've had to raise the rings on our swingset twice, because someone keeps on growing, and growing, and growing. Which is good, and sorta bad. It's shocking to us because we've gone years with praying he'd grow with very slow progress. So its weird to us. He's way to heavy to pick up and carry now-which you'd think at 30 some pounds that wouldn't be too bad. AJ is dead-weight when you pick him up-the majority of the time. Ufta. He's too big for the infant straps in his car seats. This all so exciting, and nerve-racking at the same time. When he grows, he hurts. For those of you that are newly reading my humble little blog-his cerebral palsy prevents the message from his brain to his muscles to happen normally. So, he grows, his bones grow, but his muscles stay. Tight. Ouch. Hurt. So, growing can be painful for him and increase his tone. When he grows, its like he's walking in 4 inch heels all the time. It totally screws up his body awareness. We bulk up his time of his gigundo yoga ball, swing him (helps him loosen up) a lot, do lots of deep tissue massage, and long baths. Our whirlpool tub is the absolute best thing about this house, because AJ has benefited so much from it.
Lots of tune-ups, change-ups, and growing up going on!
Showing posts with label CI moments. Show all posts
Showing posts with label CI moments. Show all posts
Monday, October 1, 2012
Tuesday, July 13, 2010
AJ's 2nd Cochlear Implant Activation
...was over a month ago. Wow.
This activation was MUCH different than his first one. He had suddenly turned into such a big boy sitting in that chair. Pictures will have to suffice, as we DID record it, but I can't get the video to upload to Blogger.
Hearing the BEEPS with his new implant:
When his audi called his name, shortly after she added his right implant back into the mix, he TURNED IMMEDIATELY. At that moment, I KNEW we had made the right decision to go bilateral. While I knew it was the right decision before, call this moment cement.
This activation was MUCH different than his first one. He had suddenly turned into such a big boy sitting in that chair. Pictures will have to suffice, as we DID record it, but I can't get the video to upload to Blogger.
We had him wear his
Hearing SPEECH with his new implant:
Hearing his audi say his name for the first time
with BILATERAL IMPLANTS
{This was truly amazing!}
BILATERAL
Left Ear June 2010 Right Ear April 2009
I'm ready world...
AJ has done extremely well with his new implant. He's been wearing it with no problem from the very beginning. We are now on our 13th program (something like that) and he's just now pulling the left off every now and then. Things sound totally different to him with both implants. The louder we turn him up, the bigger difference I see.
When his audi called his name, shortly after she added his right implant back into the mix, he TURNED IMMEDIATELY. At that moment, I KNEW we had made the right decision to go bilateral. While I knew it was the right decision before, call this moment cement.
He heard an airplane the day after his activation. He had never paid attention to airplanes in the sky before. He tunes into the oven timer beeping, and other smaller sounds he never paid attention to before. He is so much more in tune with his world The general rule of thumb is that a child has all they need to develop speech and language with one single cochlear implant. I agree...to a certain degree. Some kiddos do remarkably well with just one. AJ needed two. 'Nuf said.
AJ's activation was a special day, as it was our 9th wedding anniversary. However, true to our past, everything was thrown into one day, so I don't really think we were able to enjoy this moment as much as we truly wanted to. Shortly after AJ's activation, Jeremy and I had an appointment with his neurologist, which made the day very heavy on our hearts.
AJ has been astounding the critics since his 2nd activation. And I know he'll continue to do so....
Thursday, June 17, 2010
Pitter Patter
One of the things I love about our house is the overhang over the garage. While hard to explain, it allows me to
A few weeks ago we had a huge rainfall during an afternoon. Well, we all know how my brain works. Rain? Opportunity. Last year AJ experienced and HEARD rain for the first time at night. This time, it was a bit different. While we sat under the overhang, we listened to the sound of the rain and...
Watching the rain fall on our feet:
Out came the sun:
And we played in the rain:
Friday, May 21, 2010
What a Treat
Yesterday I went out on a limb and offered the box of dog treats to AJ. No, not to eat. He promptly stuck his hand in, took out one treat, and handed it to Rocky, our German Shepherd. After initial shock and awe, followed by loads of praise, I offered the box again. He took out another bone and gave it to Sunny, our yellow lab. My initial thought was that AJ would put the bone to his own mouth. No. He knew the objects purpose.
Rocky, is uber gentle. I mean if you say the words "gentle" he won't take it.and he'll go lay down. He's a shep, but thinks he's a puppy and doesn't know he's suppose to host the all the stigmas of shepherds. He's my gentle giant. Now Sunny. He's not vicious either, he's just a bit excited that he's getting treats. And, sometimes I think he thinks he's getting the last treat ever in the whole wide world. But with AJ, he was great. Something about our giant dogs and their precious little boy.
Today, AJ picked up Rocky's frisbee and gave it to him. No prompts or anything by me. We were standing by the door and he just picked it up and gave it to him. Another round of shock, awe, and praise. Rocky is a frisbee freak, so this thrills him to no end. I give it a day until Rocky is running around behind AJ trying to get him to throw the frisbee. Throwing is one of AJ's goals @ school...perhaps this may work for both parties.
We followd the inpromptu frisbee giving with a few verbal prompts. "AJ, give it to Rocky." To which he did. No pointing, no visual cues. Just my voice...and a sweet pointy-eared dog staring directly at him channeling " frisbee" through his eyes.
I took it one step further and asked AJ to pet Rocky. He took a step toward Rocky put his little hand on his neck and pushed in a little. Amazing.
I purposely did not "model" these activities. I wanted to truly see what AJ understands on his own. The dogs have been here since he came home, so they certainly aren't foreign to him. He knows they are large, take up a lot of space on the floor, and that when they bark, someone is at the door. If they get in his way, he climbs over them or pushes them out of the way. Somehow, the dogs are just fine with that, which boggles my mind. AJ sometimes kneeds Sunny's back like a cat does to your lap. And he just lays there. {Sunny's coat also happens to be a great sensory experience for AJ's legs and feet} Although they've been around, AJ hasn't "sought" them out much. Until now.
Rocky came in the room a bit ago and I asked AJ, "Where's Rocky?" He stuck out his arm and reached for Rocky. Today, when I gave him a treat for the dogs, he whipped his head around to look for them. The amount of eye contact he's giving them is amazing. He's looking to find them, them watching them as they retrieve their treat from his hand.
That, my friends, is called gigundo progress. And yes, in my dictionary gigundo is a word.
Rocky, is uber gentle. I mean if you say the words "gentle" he won't take it.and he'll go lay down. He's a shep, but thinks he's a puppy and doesn't know he's suppose to host the all the stigmas of shepherds. He's my gentle giant. Now Sunny. He's not vicious either, he's just a bit excited that he's getting treats. And, sometimes I think he thinks he's getting the last treat ever in the whole wide world. But with AJ, he was great. Something about our giant dogs and their precious little boy.
Today, AJ picked up Rocky's frisbee and gave it to him. No prompts or anything by me. We were standing by the door and he just picked it up and gave it to him. Another round of shock, awe, and praise. Rocky is a frisbee freak, so this thrills him to no end. I give it a day until Rocky is running around behind AJ trying to get him to throw the frisbee. Throwing is one of AJ's goals @ school...perhaps this may work for both parties.
We followd the inpromptu frisbee giving with a few verbal prompts. "AJ, give it to Rocky." To which he did. No pointing, no visual cues. Just my voice...and a sweet pointy-eared dog staring directly at him channeling " frisbee" through his eyes.
I took it one step further and asked AJ to pet Rocky. He took a step toward Rocky put his little hand on his neck and pushed in a little. Amazing.
I purposely did not "model" these activities. I wanted to truly see what AJ understands on his own. The dogs have been here since he came home, so they certainly aren't foreign to him. He knows they are large, take up a lot of space on the floor, and that when they bark, someone is at the door. If they get in his way, he climbs over them or pushes them out of the way. Somehow, the dogs are just fine with that, which boggles my mind. AJ sometimes kneeds Sunny's back like a cat does to your lap. And he just lays there. {Sunny's coat also happens to be a great sensory experience for AJ's legs and feet} Although they've been around, AJ hasn't "sought" them out much. Until now.
Rocky came in the room a bit ago and I asked AJ, "Where's Rocky?" He stuck out his arm and reached for Rocky. Today, when I gave him a treat for the dogs, he whipped his head around to look for them. The amount of eye contact he's giving them is amazing. He's looking to find them, them watching them as they retrieve their treat from his hand.
That, my friends, is called gigundo progress. And yes, in my dictionary gigundo is a word.
Today: I am proud of all of my boys.
Thursday, March 25, 2010
One Year Ago Today...
AJ had his cochlear implant surgery.
Click HERE to read and see the slideshow of that very special day.
Sunday, March 21, 2010
Springing Forward
Regardless of the snow we got yesterday, I'm saying its officially Spring. The time of year where I apologize in a one-way conversation to Jeremy's grandma. I know she watches from heaven and shakes her head at me. I know, I know. The yard is...lack luster. I apologize for not being a flower/garden/planty person and know that she knows AJ is my current project...and that I'm more of a crafty gal, than a flower gal. I walk around and see what plants have survived all these years and promise this year will be the year I put up a new bird feeder. Without fail, I'll see a cardinal on one of the back pine trees and know she's listening.
Last week was nothing short of gorgeous. AJ and I spent a lot of time outside in the afternoons. I left the screen door propped open so the dogs could go in and out. AJ surprised me by coming back outside, independently manipulating our two front steps all by himself. They are steep-so I was amazed. He did a lot of walking around the truck as well as up and down the driveway.
His walking is so much better. We took a kick ball outside and practiced kicking in standing. Actually, I was trying to roll the ball in his path so that as he walked he would kick the ball. It worked until the dog realized it was a ball that I was pitching at AJ. Sidenote: all balls belong to Rocky, our German Shepherd. Goof.
CI: Last week AJ's CI decided to stop working at school. Reason 8,453 we love that he's at his current school. His school staff know how to troubleshoot CIs. This time, it wasn't so simple. Since I was in the area, I buzzed over to school to check it out. The safety lock refused to budge. Once I popped that offlike a champagne cork, the pin insert, which holds the processor and battery pack, refused to budge. ??? I finally got that out, swapped out the cord, and put her back together. Still didn't work.
Long story short-the backup cord I used to replace the old one, was also bad! It happens. The pin was also bent-again. We seem to be the only ones that bend pins. I called our handy-dandy Med-El rep and ordered new cords, a new pin, and a new safety lock. As I sat with his coil, processor, cord, and various other parts, I was amazed at how quickly I was taking it apart, testing, organizing the parts so they wouldn't get mixed up, etc. A year ago I was afraid to touch the thing. :)
The next day his CI acted up again. Grr!! Not the same extent, but its still frustrating. Of course you want it to work 100%-100% of the time. We've been keeping a close eye on it and testing it often, just to make sure its working. I've got a call into his CI audi to check with her. We might send the processor in and have him wear his backup for now.
The good thing in all of this? AJ "told" the school staff it wasn't working. He totally knows what this thing on his head does and can tell when its not "on". He kept taking it off his head. Way to go AJ! He did spend the rest of the day at school "off the air", but I'm ok with that. It was only an hour of school. He was patient, even though he was off the air, and still participated. Another reason we are glad he'll be bilateral soon. If one goes, he's still got access to sound. When he was "back on the air", he began vocalizing right away. CI's rock!
AJ's Girls: Almost 2 years ago, we put a flyer up for a "sitter job" in the student services area of a local college. We knew with AJ's disabilities and his CI equipment we wanted someone reliable. Result? Jenna and Abby. Two wonderful nursing students who have been nothing short of amazing with AJ.
They both learned sign language to aid communciation with AJ, learned how to work his cochlear implant, knew what behaviors were allowed and not allowed, rolled with the punches when AJ's schedule/activities/etc. changed, and put up with our overbearing gigundo dogs. They gave me the chance to talk to adults during the day, go to my own appointments, and get.things.done. They gave Jer and I the chance to get a way and just be a couple for a few hours.
They love AJ and it shows. We could not have asked for better sitters. And now they are graduating. I am so incredibly sad. I told them they could not graduate. We wish them all the best and hope they enjoyed spending time with AJ as much as we enjoyed having them in our lives.
AG Bell: We are submitting our scholarship application for the AG Bell Convention in Orlando, FL in June very soon. I am REALLY REALLY REALLY hoping we are granted a scholarship. This would be a fantastic opportunity for Jeremy and I to learn from professionals and other parents from all across the country. I'm also hoping Jeremy can take the time off of work. If not, I'll be going solo. IF we get the scholarship. What is AG Bell? Cross your fingers and toes we get a scholarship!
Family Support Program (FSP): We've applied for services through Wisconsin's Family Support Program. What is the Family Support Program? There is a waiting list for this program. We are hoping to receive funds to help cover some of AJ's equipment, etc. Bascially, things that insurance won't pay for that come out of our pocket. We've been encouraged by several of the agencies we work with to apply for this funding, so we're doing it.
Intensives: We plan to have AJ attend the week-long intensive therapy session through Partners for Progress in October. Partners for Progress is run by the two world renowned therapists who have both treated AJ. We just received our packet, so we're putting in our availability for October, so they save a spot for AJ. If we are lucky, the FSP funds will be available then to help pay for the intensives. If not, we'll hope for it to be available next year.
IEP: As usual, we are beginning our transition from freakout mode to preparation, man your battlestations mode. This is again, unfamiliar territory. We haven't been in this position yet, where he's already been at our choice of school for a year and we are requesting for him to return for the summer and following year. We are hoping to pow-wow with his teacher and get her thoughts on things, to further help our preparation. I also need to find out who will be present at this IEP. It will be scheduled soon, which I'm sure will throw me into another freakout-temporarily.
Communication: AJ has totally got the object communication down. With everything, except the potty. His control has gotten much better in the potty department, though, let me say. He thinks its fun to go potty in public places, because they always have sinks. Fun sinks. That have soap and water to play in.
Back to the communication. He is able to use object communication when he wants his juice, milk, or to eat. To brush his teeth. He knows his coat means bye-bye and will bring it to you when he wants to go outside/go bye-bye. He has increased his leading skills. Example: Yesterday, he came into the dining room, took my hand, led me to his room, reached for the door knob, when he couldn't turn it, he took my hand and put it on the doorknob, I hand-over-hand helped him turn it (he's so close!), and he led me to his bed. Translation: Mom, I'm tired. I want to lay down. I was shocked. And proud.
I'm almost thinking of trying pictures with him, of his spoon/fork/juice box/milk carton on the fridge. I wonder what he'd do. I guess we'll find out. Now if we could only get this potty thing down. He knows the word potty now, which is awesome. We need to continue working on head nodding . I'm determined to get him to nod his head yes/no, wave hi/bye, and point to things. I think Daddy would be thrilled if he pointed at the basketball game on tv.
This week is jam-packed with appointments and events; 7 to be exact. Wish us luck!
Last week was nothing short of gorgeous. AJ and I spent a lot of time outside in the afternoons. I left the screen door propped open so the dogs could go in and out. AJ surprised me by coming back outside, independently manipulating our two front steps all by himself. They are steep-so I was amazed. He did a lot of walking around the truck as well as up and down the driveway.
His walking is so much better. We took a kick ball outside and practiced kicking in standing. Actually, I was trying to roll the ball in his path so that as he walked he would kick the ball. It worked until the dog realized it was a ball that I was pitching at AJ. Sidenote: all balls belong to Rocky, our German Shepherd. Goof.
CI: Last week AJ's CI decided to stop working at school. Reason 8,453 we love that he's at his current school. His school staff know how to troubleshoot CIs. This time, it wasn't so simple. Since I was in the area, I buzzed over to school to check it out. The safety lock refused to budge. Once I popped that off
Long story short-the backup cord I used to replace the old one, was also bad! It happens. The pin was also bent-again. We seem to be the only ones that bend pins. I called our handy-dandy Med-El rep and ordered new cords, a new pin, and a new safety lock. As I sat with his coil, processor, cord, and various other parts, I was amazed at how quickly I was taking it apart, testing, organizing the parts so they wouldn't get mixed up, etc. A year ago I was afraid to touch the thing. :)
The next day his CI acted up again. Grr!! Not the same extent, but its still frustrating. Of course you want it to work 100%-100% of the time. We've been keeping a close eye on it and testing it often, just to make sure its working. I've got a call into his CI audi to check with her. We might send the processor in and have him wear his backup for now.
The good thing in all of this? AJ "told" the school staff it wasn't working. He totally knows what this thing on his head does and can tell when its not "on". He kept taking it off his head. Way to go AJ! He did spend the rest of the day at school "off the air", but I'm ok with that. It was only an hour of school. He was patient, even though he was off the air, and still participated. Another reason we are glad he'll be bilateral soon. If one goes, he's still got access to sound. When he was "back on the air", he began vocalizing right away. CI's rock!
AJ's Girls: Almost 2 years ago, we put a flyer up for a "sitter job" in the student services area of a local college. We knew with AJ's disabilities and his CI equipment we wanted someone reliable. Result? Jenna and Abby. Two wonderful nursing students who have been nothing short of amazing with AJ.
They both learned sign language to aid communciation with AJ, learned how to work his cochlear implant, knew what behaviors were allowed and not allowed, rolled with the punches when AJ's schedule/activities/etc. changed, and put up with our overbearing gigundo dogs. They gave me the chance to talk to adults during the day, go to my own appointments, and get.things.done. They gave Jer and I the chance to get a way and just be a couple for a few hours.
They love AJ and it shows. We could not have asked for better sitters. And now they are graduating. I am so incredibly sad.
Family Support Program (FSP): We've applied for services through Wisconsin's Family Support Program. What is the Family Support Program? There is a waiting list for this program. We are hoping to receive funds to help cover some of AJ's equipment, etc. Bascially, things that insurance won't pay for that come out of our pocket. We've been encouraged by several of the agencies we work with to apply for this funding, so we're doing it.
Intensives: We plan to have AJ attend the week-long intensive therapy session through Partners for Progress in October. Partners for Progress is run by the two world renowned therapists who have both treated AJ. We just received our packet, so we're putting in our availability for October, so they save a spot for AJ. If we are lucky, the FSP funds will be available then to help pay for the intensives. If not, we'll hope for it to be available next year.
IEP: As usual, we are beginning our transition from freakout mode to preparation, man your battlestations mode. This is again, unfamiliar territory. We haven't been in this position yet, where he's already been at our choice of school for a year and we are requesting for him to return for the summer and following year. We are hoping to pow-wow with his teacher and get her thoughts on things, to further help our preparation. I also need to find out who will be present at this IEP. It will be scheduled soon, which I'm sure will throw me into another freakout-temporarily.
Communication: AJ has totally got the object communication down. With everything, except the potty. His control has gotten much better in the potty department, though, let me say. He thinks its fun to go potty in public places, because they always have sinks. Fun sinks. That have soap and water to play in.
Back to the communication. He is able to use object communication when he wants his juice, milk, or to eat. To brush his teeth. He knows his coat means bye-bye and will bring it to you when he wants to go outside/go bye-bye. He has increased his leading skills. Example: Yesterday, he came into the dining room, took my hand, led me to his room, reached for the door knob, when he couldn't turn it, he took my hand and put it on the doorknob, I hand-over-hand helped him turn it (he's so close!), and he led me to his bed. Translation: Mom, I'm tired. I want to lay down. I was shocked. And proud.
I'm almost thinking of trying pictures with him, of his spoon/fork/juice box/milk carton on the fridge. I wonder what he'd do. I guess we'll find out. Now if we could only get this potty thing down. He knows the word potty now, which is awesome. We need to continue working on head nodding . I'm determined to get him to nod his head yes/no, wave hi/bye, and point to things. I think Daddy would be thrilled if he pointed at the basketball game on tv.
This week is jam-packed with appointments and events; 7 to be exact. Wish us luck!
Sunday, September 20, 2009
Wednesday, May 20, 2009
Wonderful Wednesday
Happy 1 Month of Hearing AJ!
Wow! Really? 1 month? It feels like yesterday. I'm sure we'll say the same thing when its been a year.
We were having doubts last week...big time. Are we doing enough? Is he doing what he's supposed to be doing? Did we choose the right communication option?
Tonight, exactly 1 month since activation, AJ responded to all of the items in the "Parents" drum kit like it was old hat. Yeah Ma, I heard that. Whatever.
LOL.
Lately, when his coil falls off, I giggle and humbly put it back on his head. All I have to do is place this small piece of his head and he can hear. A month ago, six months ago, a year ago, we could only dream of our little man hearing.
He has been paying more attention to strangers voices. He tends to ignore my voice and Jer's voice. But when he hears someone else talk, he notices right away. He's signing more consistently. A few other signs are emerging. He's interested in bach and forth play with his voice. We use a small flashlight and shine it under my mouth when I say "AAHHHHH". When I stop, I turn the light off. He has started pushing the light towards my mouth after I put it under his mouth to signal his turn. He has vocalized a few times, so I'll count this as emerging. He's been very vocal, usually pairing it with movement or while watching something move (fan). Longer sounds and we've heard "gooooo or guuhh" a few times, but not consistent. He playing with the different intonations of his voice. His receptive language has increased as well.
Tomorrow is his 1 month FU appointment with his CI audi. We will do another booth testing and receive another set of programs for his CI. I wonder where he'll test tomorrow....
Wow! Really? 1 month? It feels like yesterday. I'm sure we'll say the same thing when its been a year.
We were having doubts last week...big time. Are we doing enough? Is he doing what he's supposed to be doing? Did we choose the right communication option?
Tonight, exactly 1 month since activation, AJ responded to all of the items in the "Parents" drum kit like it was old hat. Yeah Ma, I heard that. Whatever.
LOL.
Lately, when his coil falls off, I giggle and humbly put it back on his head. All I have to do is place this small piece of his head and he can hear. A month ago, six months ago, a year ago, we could only dream of our little man hearing.
He has been paying more attention to strangers voices. He tends to ignore my voice and Jer's voice. But when he hears someone else talk, he notices right away. He's signing more consistently. A few other signs are emerging. He's interested in bach and forth play with his voice. We use a small flashlight and shine it under my mouth when I say "AAHHHHH". When I stop, I turn the light off. He has started pushing the light towards my mouth after I put it under his mouth to signal his turn. He has vocalized a few times, so I'll count this as emerging. He's been very vocal, usually pairing it with movement or while watching something move (fan). Longer sounds and we've heard "gooooo or guuhh" a few times, but not consistent. He playing with the different intonations of his voice. His receptive language has increased as well.
Tomorrow is his 1 month FU appointment with his CI audi. We will do another booth testing and receive another set of programs for his CI. I wonder where he'll test tomorrow....
Saturday, May 9, 2009
It's Alright
Is it really a surprise that our little man has another cold? Probably not. He really seemed to be feeling better today. Less congested and was up and moving again. His next surgery is the 19th so we are nursing this cold to the best of our abilities. We had planned to meet up with another CI kiddo, Logan and his Mom who were in Madison for the week, but stayed home due to AJ's cold. Grrr.
In other news, he continues to do unbelievably well with his implant. He's been on P3 since Thursday night. He responded immediately to softer/higher frequency sounds. While I was on playlist that night, I played a Huey Lewis song. AJ was close to the laptop and turned immediately to the music. He just kept starring at the laptop. He returned to playing with his toy when I decided to turn the volume down to see if he would respond. Sure enough, he stopped playing with his toy, stopped moving, and then looked up at the laptop. AMAZING!!! I'll skip the review of language we used with him here, but know that we took advantage of the situation! I gave him a moment and he went back to his toy. I turned the music back up and he looked straight up at the laptop. He giggled when I took his arms and swayed him from side to side with the very song he had just heard-Huey Lewis, "Its Alright".
He had a good speech session this week and had another great session with his TOD yesterday. He seems to be ignoring speech. No, not my kiddo ;) He did some good head turns and definitely stopped his play when he heard sound. He doesn't mind the dogs and their barking at all. We have noticed that he startles a bit if one of us is holding him and we speak very loudly or call to the other person if they are in another room. AJ is responding to a lo of different sounds, some while we are testing and some during everyday play.
His eye contact is phenomonal. He is now signing "more" consistently on his own. He consistently grabs your hand and shows you what he wants. He's beginning to use his voice with purpose, to tell you what he wants. He's so close to "pointing" at something and showing you he wants it. Right now its a reach & short whine. We'll take it!
He had a horrible day at toddler group last week. Part of it was on me, since I probably shouldn't have taken him to group. He has missed so many appointments and group already. I can't keep him home all the time for every sniffle/cough, but this day I should have. I get the bad mom award for that day. Part of it was him being 2 and trying to play the staff. He was totally working every angle he could manage. I am determined to help him understand circle time, learn to sit and partcipate in circle time, and to get him interested in other kiddos.
It breaks my heart when I see a room full of kids and mine is in the corner on his own with one of the staff. He is great at keeping himself entertained-check that skill off the list. Now we need to get him interested in being social with other kiddos. I voiced my concern to AJ's TOD. She gave me a fabulous handout on the levels of play. How on earth does she always have the right thing to say and the right information to give me? I don't know. But I sure appreciate it. We needed a reminder of where he is and how far he's come. We also needed to see how he's already moved up the ladder post-implant and be reassured of our efforts.
Small steps. Big moments. It's more than ALRIGHT.
In other news, he continues to do unbelievably well with his implant. He's been on P3 since Thursday night. He responded immediately to softer/higher frequency sounds. While I was on playlist that night, I played a Huey Lewis song. AJ was close to the laptop and turned immediately to the music. He just kept starring at the laptop. He returned to playing with his toy when I decided to turn the volume down to see if he would respond. Sure enough, he stopped playing with his toy, stopped moving, and then looked up at the laptop. AMAZING!!! I'll skip the review of language we used with him here, but know that we took advantage of the situation! I gave him a moment and he went back to his toy. I turned the music back up and he looked straight up at the laptop. He giggled when I took his arms and swayed him from side to side with the very song he had just heard-Huey Lewis, "Its Alright".
He had a good speech session this week and had another great session with his TOD yesterday. He seems to be ignoring speech. No, not my kiddo ;) He did some good head turns and definitely stopped his play when he heard sound. He doesn't mind the dogs and their barking at all. We have noticed that he startles a bit if one of us is holding him and we speak very loudly or call to the other person if they are in another room. AJ is responding to a lo of different sounds, some while we are testing and some during everyday play.
His eye contact is phenomonal. He is now signing "more" consistently on his own. He consistently grabs your hand and shows you what he wants. He's beginning to use his voice with purpose, to tell you what he wants. He's so close to "pointing" at something and showing you he wants it. Right now its a reach & short whine. We'll take it!
He had a horrible day at toddler group last week. Part of it was on me, since I probably shouldn't have taken him to group. He has missed so many appointments and group already. I can't keep him home all the time for every sniffle/cough, but this day I should have. I get the bad mom award for that day. Part of it was him being 2 and trying to play the staff. He was totally working every angle he could manage. I am determined to help him understand circle time, learn to sit and partcipate in circle time, and to get him interested in other kiddos.
It breaks my heart when I see a room full of kids and mine is in the corner on his own with one of the staff. He is great at keeping himself entertained-check that skill off the list. Now we need to get him interested in being social with other kiddos. I voiced my concern to AJ's TOD. She gave me a fabulous handout on the levels of play. How on earth does she always have the right thing to say and the right information to give me? I don't know. But I sure appreciate it. We needed a reminder of where he is and how far he's come. We also needed to see how he's already moved up the ladder post-implant and be reassured of our efforts.
Small steps. Big moments. It's more than ALRIGHT.
Friday, May 1, 2009
60db
AJ had his first cochlear implant audiogram today. He tested at 60db. Yes. I said 60db. I have the paper to prove it. We've never seen marks on this chart that far up. NEVER. Before he was implanted, he tested at 110-120db...or should I say to the max our audiology clinic's equipment can test. Thats a jump of 50-60 db in 11 days. Here is is an audiogram chart so you can see where the levels of certain sounds. The "yellow banana" is called the speech banana. This is where speech sounds are heard. Althought, if you talk with a strong voice, or yell, your voice could be louder than in the speech banana range (or at least at the bottom).
He did well in the booth. Slow, subtle reactions. Not great head turns, but enough to give his audi the information she needed to give him another MAP (program his processor at a new level and create more programs for us to continue turning him up). For the first time EVER, I did not have to wear earplugs in the booth. In the past, AJ's SLP and myself have always worn earplugs to protect our own hearing from the ridiculously loud levels needed previously. Amazing. He was extremely vocal in the booth, which he's NEVER been. EVER. Amazing.
After testing we sat down to review paperwork and go over the rechargable battery pack. Yep, we got another box. Oh, that's right, I didn't post a picture of AJ's loot. This is what we came home with on activation day. Now we have one more to add. The brief case is very James Bond-ish, but Melanie is right, it is not very user friendly. I'll be moving everything to another "bin" soon.
He did remarkably well today, considering he had speech beforehand. We left, stopped to get some items from the store, and came back for his audiogram. His audi programmed his processor and then tested to make sure it wasn't too loud. He had IMMEDIATE responses to her voice, banging on the metal cabinet, and her clapping. I'm getting really good at noticing his reactions to sound. "Eye shift, blink, looked left, right." While playing on the floor with his SLP he decided to prove another OT skill. He pushed a button sideways to make the pop-up giraffe come up. Check that one off the list. I don't know what the technical skill is called, but I'll call it "pushing the button to the side vs. just pushing it down." He crashed in the car and is still sleeping. I don't care. My little man did wonderful today and deserves a nice long nap. So what if we're eating ice cream and still up at 10pm? Who cares. Today? Not me.
{Just as I typed that I heard a clear "Ooooooo" come from his bedroom}
60db jump in 11 days, I'll take that. Yes, siree.
He did well in the booth. Slow, subtle reactions. Not great head turns, but enough to give his audi the information she needed to give him another MAP (program his processor at a new level and create more programs for us to continue turning him up). For the first time EVER, I did not have to wear earplugs in the booth. In the past, AJ's SLP and myself have always worn earplugs to protect our own hearing from the ridiculously loud levels needed previously. Amazing. He was extremely vocal in the booth, which he's NEVER been. EVER. Amazing.
After testing we sat down to review paperwork and go over the rechargable battery pack. Yep, we got another box. Oh, that's right, I didn't post a picture of AJ's loot. This is what we came home with on activation day. Now we have one more to add. The brief case is very James Bond-ish, but Melanie is right, it is not very user friendly. I'll be moving everything to another "bin" soon.
He did remarkably well today, considering he had speech beforehand. We left, stopped to get some items from the store, and came back for his audiogram. His audi programmed his processor and then tested to make sure it wasn't too loud. He had IMMEDIATE responses to her voice, banging on the metal cabinet, and her clapping. I'm getting really good at noticing his reactions to sound. "Eye shift, blink, looked left, right." While playing on the floor with his SLP he decided to prove another OT skill. He pushed a button sideways to make the pop-up giraffe come up. Check that one off the list. I don't know what the technical skill is called, but I'll call it "pushing the button to the side vs. just pushing it down." He crashed in the car and is still sleeping. I don't care. My little man did wonderful today and deserves a nice long nap. So what if we're eating ice cream and still up at 10pm? Who cares. Today? Not me.
{Just as I typed that I heard a clear "Ooooooo" come from his bedroom}
60db jump in 11 days, I'll take that. Yes, siree.
Tuesday, April 28, 2009
P4 and more
Yesterday, AJ decided to be "2" when he woke up from his nap. He screamed for about an hour. Nothing, I mean nothing would make him happy. He heard his own crying and yelling...and didn't like it. AT ALL. Towards the end of his tantrum he took his coil off for the first time ever. He realized that 1) HE WAS THE ONE MAKING THE NOISE 2) THIS THING IS WHAT MAKES ME HEAR. We placed it back on and watched for reaction. Again, he got mad as his crying got louder. We think he was crying more because he didn't like the sound of himself crying. We gave him a break from his CI for a few minutes. When we placed the coil back on Daddy took him outside to walk around on his shoulders (his favorite thing to do). The boys went for ice cream shortly after their walk. Mommy had the whole house to herself for a whole half-hour. I typed AJ's IEP Parent Report-fun fun. We didn't switch programs yesterday and nothing outside the usual happened. So what brought this on? Hm.
Today, AJ had another speech appointment. He did remarkably well, this time turning to the "light boxes" in his SLP's room. We also use these in the sound booth as rewards for turning to a sound/noise. AJ needs to practice/learn how to turn. He was good at it in the booth before with his HA's, but that was over 7 months ago. He turned to the cymbals, clacker, drum, SLP's voice, clapping, and possible response to the tamborine. We were actually able to get him to turn to the light boxes. (He did not do this in the chair during activation-I think half of his issue was the height of the boxes vs. his chair) Jeremy and I had decided that I would turn AJ up to P4 while we were at speech today. He had no negative responses. Yay!
He had great eye contact with his SLP today, full of intent. He also grabbed her hands multiple times to push her hands together for "more". His SLP and I discussed what we've been seeing at home, including longer vocalizations and AJ talking back and forth with us (ooooooo, OOOOOOOOOO, ooooooooooo, OOOOOOO). When I turned around in the car yesterday to give him more of his snack, I said "more" (his coil was off-darn carseat) and he signed "More". SO.....we are thinking he definitely recognizes my facial expressions and what they mean, and he may also be reading my lips. We've been doing "physical nudging" to encourage him to consistently sign "more". We nudge his elbow and he brings his hands together. AJ is turning to our voices more often. He is standing up on his own again and walking instead of crawling.
When he got up from his nap today, he started screaming when I put his CI on again. What the? We tried to sooth and keep background noises to a minimum. When that did not seem to help, we again took it off, gave him a break, and put it back on. He was fine. So maybe he just needs a bit of time to adjust/wake up before we put it back on. He does not do this in the morning.
Tonight I played the piano for my son, which was an experience I will never forget. He enjoyed it and loved being up on the bench with me to pound the keys! He also did very well with signing "more" during his multiple courses of dinner tonight. He is doing so well...even though the crying post-nap freaked us out.
We're anxious for his audiogram on Friday to see where AJ's hearing with his CI. This may be the first sound booth experience where I won't have to wear earplugs :)
Today, AJ had another speech appointment. He did remarkably well, this time turning to the "light boxes" in his SLP's room. We also use these in the sound booth as rewards for turning to a sound/noise. AJ needs to practice/learn how to turn. He was good at it in the booth before with his HA's, but that was over 7 months ago. He turned to the cymbals, clacker, drum, SLP's voice, clapping, and possible response to the tamborine. We were actually able to get him to turn to the light boxes. (He did not do this in the chair during activation-I think half of his issue was the height of the boxes vs. his chair) Jeremy and I had decided that I would turn AJ up to P4 while we were at speech today. He had no negative responses. Yay!
He had great eye contact with his SLP today, full of intent. He also grabbed her hands multiple times to push her hands together for "more". His SLP and I discussed what we've been seeing at home, including longer vocalizations and AJ talking back and forth with us (ooooooo, OOOOOOOOOO, ooooooooooo, OOOOOOO). When I turned around in the car yesterday to give him more of his snack, I said "more" (his coil was off-darn carseat) and he signed "More". SO.....we are thinking he definitely recognizes my facial expressions and what they mean, and he may also be reading my lips. We've been doing "physical nudging" to encourage him to consistently sign "more". We nudge his elbow and he brings his hands together. AJ is turning to our voices more often. He is standing up on his own again and walking instead of crawling.
When he got up from his nap today, he started screaming when I put his CI on again. What the? We tried to sooth and keep background noises to a minimum. When that did not seem to help, we again took it off, gave him a break, and put it back on. He was fine. So maybe he just needs a bit of time to adjust/wake up before we put it back on. He does not do this in the morning.
Tonight I played the piano for my son, which was an experience I will never forget. He enjoyed it and loved being up on the bench with me to pound the keys! He also did very well with signing "more" during his multiple courses of dinner tonight. He is doing so well...even though the crying post-nap freaked us out.
We're anxious for his audiogram on Friday to see where AJ's hearing with his CI. This may be the first sound booth experience where I won't have to wear earplugs :)
Sunday, April 26, 2009
Long Weekend
What is it about a cold and rainy day that makes you want to do absolutely nothing? Nothing but curl up with a cup of hot cocoa, a good book, and a blanket that is entirely too big for you. Times that type of day by two and you've got our weekend.
We had absolutely gorgeous weather on Friday. So gorgeous we debated on turning on the air conditioning. It cooled down a bit and a beautiful breeze came in during the early evening. We grilled out and sat outside with AJ, enjoying the warm breeze. AJ has always loved the wind in his face, but his reaction this time was a bit different. He could hear it. It was a strong enough breeze that he was definitely hearing something.
The weather was supposed to be nice again on Saturday. Not so much. Saturday morning was nice enough we had AJ outside in his PJs and ate breakfast on the bench swing. AJ thought it was pretty cool. It was also a great language experience. Truth be told we don't know "exactly" what he's hearing, or at what level he's hearing, but it doesn't hurt to practice or to help him to continue to detect sound. Mid-morning the weather took a sudden turn to cold, damp, and rainy. Rain turned into what seemed like a monsoon. Grrr. It rained all night and throughout today. It was our first experience with AJ in the rain with his CI. A little nerve racking. Granted we only had to run from my Grandma's house to the car, but still.
Jumping back to Friday, AJ's TOD came for our weekly session. She was thrilled to hear/see how AJ was doing with his CI. I also gave her the log of daily activity related to AJ hearing; we've been keeping this log since Monday. He responded to the wooden block & wooden mallet, the jingle bells, and the cymbals that his TOD brought. YAY! I was especially excited that he responded to the jingle bells, as they were softer than the sleigh bells we have. I also turned him up to P3 while his TOD was here. No "sudden" reaction. Sort of like "ho-hum" nothing happened. Hm. He heard the bath water for the first time on Friday. It dawned on me to take him in the bathroom and let him listen to the water fill the tub while he stood and watched. His face was priceless. After I took his CI off and put him in the tub, he went straight for the water, starring and giggling at it. :)
He continued to do well yesterday with his CI. Nothing too exciting happened yesterday.
Today he was not in the best of moods. I have noticed more consistent naps since he's been activated, which is a blessing as he still needs a good nap in the afternoon. I can only imagine how hard his brain is working to process all of this new information and this new sense. Even though he was crabby, he still managed to make some great gains today. He has this baseball toy (thanks Bubba & JimBob!) that we've brought out from time to time and he's hasn't shown interest in in the past. He found the bat in his closet during naptime one day...as I walked in the room and found him standing on his bed with it in hand like Bam-Bam. Anyhow, he didn't have much interest in using the bat to make the ball go around and make the lights turn on...but he figured out rather quickly that if he moved the ball, the lights would turn on. He also heard his cookie jar "singing" at least three times. I purposely blocked the "nose" on the jar (it lights up) and made sure it was not in his line of sight. I then moved it in his line of sight and while he was busy with another toy I turned it on, and he heard it. He did not hear the cookie jar on his two previous programs. His communication methods have changed. He's now more vocal and is starting to "show" us what he wants. Its hard to explain, but its a step in the right direction....
We called his pediatrician regarding the skin breakdown between his thumb and index finger on his right hand. It was getting better, but stopped when AJ got under a few of the dressings and added more moisture to it. We are watching it closely, changing the bandage everyday and keeping an eagle eye on him to stop him from sucking his thumb and offering him a substitute "chewing option". We are trying to avoid infection. Those foam bath letter really work well. Poor kiddo. His teeth are really bothering him.
So all in all, we are well. Anxious for better weather and more hearing days ahead.
We had absolutely gorgeous weather on Friday. So gorgeous we debated on turning on the air conditioning. It cooled down a bit and a beautiful breeze came in during the early evening. We grilled out and sat outside with AJ, enjoying the warm breeze. AJ has always loved the wind in his face, but his reaction this time was a bit different. He could hear it. It was a strong enough breeze that he was definitely hearing something.
The weather was supposed to be nice again on Saturday. Not so much. Saturday morning was nice enough we had AJ outside in his PJs and ate breakfast on the bench swing. AJ thought it was pretty cool. It was also a great language experience. Truth be told we don't know "exactly" what he's hearing, or at what level he's hearing, but it doesn't hurt to practice or to help him to continue to detect sound. Mid-morning the weather took a sudden turn to cold, damp, and rainy. Rain turned into what seemed like a monsoon. Grrr. It rained all night and throughout today. It was our first experience with AJ in the rain with his CI. A little nerve racking. Granted we only had to run from my Grandma's house to the car, but still.
Jumping back to Friday, AJ's TOD came for our weekly session. She was thrilled to hear/see how AJ was doing with his CI. I also gave her the log of daily activity related to AJ hearing; we've been keeping this log since Monday. He responded to the wooden block & wooden mallet, the jingle bells, and the cymbals that his TOD brought. YAY! I was especially excited that he responded to the jingle bells, as they were softer than the sleigh bells we have. I also turned him up to P3 while his TOD was here. No "sudden" reaction. Sort of like "ho-hum" nothing happened. Hm. He heard the bath water for the first time on Friday. It dawned on me to take him in the bathroom and let him listen to the water fill the tub while he stood and watched. His face was priceless. After I took his CI off and put him in the tub, he went straight for the water, starring and giggling at it. :)
He continued to do well yesterday with his CI. Nothing too exciting happened yesterday.
Today he was not in the best of moods. I have noticed more consistent naps since he's been activated, which is a blessing as he still needs a good nap in the afternoon. I can only imagine how hard his brain is working to process all of this new information and this new sense. Even though he was crabby, he still managed to make some great gains today. He has this baseball toy (thanks Bubba & JimBob!) that we've brought out from time to time and he's hasn't shown interest in in the past. He found the bat in his closet during naptime one day...as I walked in the room and found him standing on his bed with it in hand like Bam-Bam. Anyhow, he didn't have much interest in using the bat to make the ball go around and make the lights turn on...but he figured out rather quickly that if he moved the ball, the lights would turn on. He also heard his cookie jar "singing" at least three times. I purposely blocked the "nose" on the jar (it lights up) and made sure it was not in his line of sight. I then moved it in his line of sight and while he was busy with another toy I turned it on, and he heard it. He did not hear the cookie jar on his two previous programs. His communication methods have changed. He's now more vocal and is starting to "show" us what he wants. Its hard to explain, but its a step in the right direction....
We called his pediatrician regarding the skin breakdown between his thumb and index finger on his right hand. It was getting better, but stopped when AJ got under a few of the dressings and added more moisture to it. We are watching it closely, changing the bandage everyday and keeping an eagle eye on him to stop him from sucking his thumb and offering him a substitute "chewing option". We are trying to avoid infection. Those foam bath letter really work well. Poor kiddo. His teeth are really bothering him.
So all in all, we are well. Anxious for better weather and more hearing days ahead.
Tuesday, April 21, 2009
Subscribe to:
Posts (Atom)
