Booth Testing

Logan sees his Audiologist to MAP (program them to to fit his needs) his equipment every couple months to make sure he is getting the maximum benefit from his equipment. We also see her to go into the sound booth and test the MAPs to make sure he is still responding appropriately with his new programs.

I've been wanting to post some videos of Logan's Sound Booth testing for a very long time, but I always seem to forget about actually recording a session until it is almost over.  Luckily, last week our wonderful Parent Infant Advisor recorded it for us and gave us the video! And of course, he wasn't as cooperative as he usually is this time.  He must have known I wanted to share this with you.

This video is the part of the testing where he was actually cooperating some.  We have taught him to hold up a toy (in this case, a puzzle piece) to his ear and listen for a sound. When he hears the sound, he puts the puzzle piece in the puzzle, or for other toys, he may be instructed to drop it in a bucket, etc. 

He kept trying to distract us from what we were doing, and at one time, he kept pointing to where Marci, his Audiologist sits just outside the booth, and saying that she was hiding.

But the thing that really had him distracted was a cupcake puzzle that he absolutely loves.  Every time we are at our appointments at Sunshine Cottage he looks for this toy and does not want to let it go. Every time he was asked to put the cupcake down when he heard the sound, he would not. And at one point, he was even holding 4 cupcakes up to his ear!

 I will try to capture some more video of him when he actually participates more.

Catching Up

It's been a couple of months since I've updated this blog and I am sorry for that!  I hadn't realized it had been so long until I was chatting with a mom I recently met who has a 6 week old son who will be getting his first set of hearing aids soon and she brought up how she had been reading my blog....whoops!

It has been a bit of a whirlwind lately with Logan's speech development.  It's only been four months since he had really started trying to say words and imitating us.  In this short time, he has already gone from single words to two and three word phrases.  Last week, his speech therapist had asked about the three word phrases, since this development is so new, and I couldn't think of any examples so I decided to keep track of them over the last week. Here are some examples:

Help mama puff puff (aka cocoa puffs)
All done get down
No milk Jaz (when he didn't want his sister to have any milk)
More light on (He is a big fan of turning EVERY light on in the house. Me, not so much)
All done pancake
It's daddy's truck
Sorry. Gentle mama (He is also a fan of hitting and saying gentle after he gets in trouble.)
Help mama washer (At least he is a good little helper!)
No more water
All done eat. All done pizza (yes, this was all at one time!)
More pizza, yes please
Gentle pet Blackjack (He was hitting the dog and I was telling him to be gentle.)

There are more, but I thought this would give a good example of his progress.

Logan has also started going to a Mother's Day Out program once a week. His sister goes three times a week so we thought it would be good for him to get some exposure to kids his own age, learn to socialize, and get him used to the structure of a classroom setting. We thought it would be best to do this because next fall he will be attending the Sunshine Cottage Pre-K3 class five days a week.  Since it is an oral school for deaf children, they start them out early to give them a head start on catching up with their hearing peers.  The school also takes typical hearing children if they can be a language model in the classroom. Because of this, we will also be sending our daughter Jasmine to the 4 year old class next year. She is definitely a language role model and will talk anyone's ear off who will let her!

I also wanted to share a video of Logan talking at dinnertime:
http://www.youtube.com/watch?v=y8JmpTENl8w

One Year of Hearing

Today marks one year since Logan's cochlear implants were turned on. It has been quite an exciting  journey so far and it is hard to believe that we are still only at the very beginning. This first year has been marked with so many milestones achieved that I can't even begin to express how grateful we are for Logan's ears.  It has changed his whole world and gave him the gift of sound.  I can't help but smile and my heart fills with joy every time he tries to say a new word and when he hears music, he smiles and starts dancing.  This is something a parent of a child born profoundly deaf would truly understand. 

Today we had his annual review with his Early Childhood Intervention teachers.  We did a language assessment and it was awesome to be able to see on paper how much he has progressed in the last year.  At his annual review last year, which was about a week after his ears were turned on, he had very little language and produced few sounds. One year later, he is trying to say new words every day, imitating words he overhears in conversations and is starting to try 2 word sentences.  He also was released from physical therapy since his motor skills are now age appropriate!

In reflecting upon the last 2 years, how we were devastated when Logan was diagnosed as profoundly deaf, we waited to find out if he would get cochlear implants, and then we waited to see how he would adapt to them.  We were unsure of what the future would hold for him.  We are thankful everyday for this awesome technology that has made it possible for Logan to have as normal a childhood and life as we can make it. He won't have to struggle trying to communicate with people because he will be able to use his voice and speak for himself.  And this is something that we would not be able to do without the wonderful knowledge and support from our family, friends, therapists, and doctors.

Moog Summer Workshop

During the last day of my Cochlear training in Denver last month, I was talking with one of the parents in attendance and he was telling me about a workshop at the Moog Center, one of the best oral deaf schools in the country, in St. Louis that his family attended a few years ago when his son was around Logan's age.  The workshop taught them so much and did so much for his son that his family decided to move there!  I had heard many good things about this school before so I made a mental note to check when the workshop would be taking place this summer.

I got home in the evening and after I spent some time with the kids and got them into bed, I got out my laptop to look into the workshop.  This was a Sunday evening and it turned out that the workshop was starting on that Tuesday.  I went ahead and emailed the director to find out if there was another summer session (which there wasn't) and she emailed me back right away and said I could call her to talk more since she was in the office (at 11 pm). Of course, I immediately called her and, from what she described, the program sounded like it would be great information for us and good practice for Logan.

After talking with Andrew at length we decided to pack up the kids and make the drive.  We are fortunate that he works from home so his office is his backpack. He would be able to work while I did the driving.  We left the house on Monday afternoon to make the 14 hour drive to St. Louis, stayed in Oklahoma City and made it there at 6 pm on Tuesday, just in time for the welcome dinner.

The next morning, we dropped the kids off in their classrooms and went to our session.  They started off with a really interesting and eye opening language simulation with the goal of having the parents experience what it is like to be expected to understand a language they do not know.  The instructor came in and told each of us our name in this new language and we had to repeat it. Then, she would name things around the room (light, floor, book, etc) and have us repeat it over and over. A couple of times, she even acted upset if we couldn't name something correctly or didn't remember it.  It really illustrated how hard it is for a child learning a language.  And especially for a child with hearing loss who has a much more difficult time understanding and acquiring language.

Everyday while we were in our session, Logan had an hour of one on one time with a speech therapist who evaluated how he is doing.  She spent time going through their list of 100 first words to see if he could identify the object she named or say it. Not surprisingly, he was able to identify most of them but would not say them.  He is very stubborn and we have had many problems getting him to repeat words, which is one of the reasons I was so interested in attending this workshop.  I wanted to get another perspective on how we should approach Logan's language acquisition.

We had two opportunities during the workshop to be observed by a teacher at the Moog and to be given pointers on how to implement their "modeling and imitation" strategy.  During these exercises, we had Logan in a booster chair and gave him a couple of choices, such as a choice between two snacks. When he pointed to what he wanted, we would model the word and expect him to repeat or, at the very least, approximate the word.  We would not give him what he wanted until he complied.  I know this sounds so simple as I write it out, but we had tried this before with little success. I think what we learned was that we can push him to that limit and he will eventually understand that he will not just get his way. Believe me, we had many conversations with his teachers over the last few months on what was the appropriate approach for him.  Also, the idea with the Moog technique is that you continually set the bar higher. For example, when he is saying one word utterances with ease, we need to expect him to say two word utterances (from "cookie" to "more cookie").  I think this has been another problem area for us. We just get so excited that he is saying something that we forget to push him to say more!

While we were there, we had the opportunity to meet up with the family that I met in Denver during the Cochlear Ambassador training.  It was so amazing to see how well their four year old son is doing with his speech and just to talk to them about their journey in the cochlear implant world with him. Also, Jasmine adored playing with him, so that was a plus.

It has been a month since we made that trip to St. Louis and I am happy to say that in that month Logan has progressed quite well.  He now understands that he is expected to vocalize and does so regularly.  So much so that his teachers have commented on how he is saying a lot more now.  He is now attempting to repeat so many more words just by us asking him to. But what I am really happy about is that he is even trying to say phrases.  Just the other day he pointed to his sister's cup and said "that's Jasmine's cup."

I am so thankful that we were told about the workshop and that we were able to attend on such short notice. Although we are not planning to move to St. Louis to attend the Moog Center since we have great services here as well, I am happy we got to see another perspective on teaching Logan speech that has been so effective so far.

Cochlear Americas Ambassador Training

So this post is not so much about Logan's progress as it is about what I have been trying to do for him and other children like him.  As you know, I started this blog to document Logan's progress once we knew he'd be receiving cochlear implants and to help spread general awareness about the technology.  I've also started a meetup group for children with hearing loss that was initially for children ages birth to three, but has since been expanded to ten years of age.  In addition, I've done some volunteer work for Cochlear and raised money for Logan's school, Sunshine Cottage.

Last year, our Family participated in the Houston Walk for Hearing 5k event where I met the  Cochlear Awareness Manager for our area named Paula. We exchanged contact information and she put me in contact with some great people locally.  Eventually, I wound up doing some volunteer work for Cochlear, which I really enjoyed.  Then, last month Paula contacted me to ask if I was interested in doing some training on Cochlear Awareness in Denver.  I was thrilled! What better way to help my son and other children with hearing loss than to take the time to absorb as much as I can to help spread awareness?  After talking with Andrew about it, we decided that I should do it.

Houston Walk for Hearing 2012

Within a few weeks, I arrived in Denver and met some really great people who were so inspiring and strong.  Some were Cochlear recipients, and others, like me, were the parents of a cochlear recipient (or two).  We learned so much together and we got to hear each others' stories.  A few of them even had the room in tears. 

It was so exciting to see the Cochlear American offices and I loved how the walls were covered in  pictures and quotes from recipients.  There was even a recipient wall that had thousands of dots representing the number of Cochlear recipients (over 250,000 worldwide).

I wish I had a better picture of this!

The front of the Cochlear office

We spent a lot of time discussing the products, the upcoming products and ways to spread awareness about cochlear implants and hearing loss. I've already had the opportunity to use my increased knowledge to help people with questions!  One thing that was really interesting was a video that they played that demonstrated the lack of knowledge / awareness about what a cochlear implants is. And really, before Logan was born and diagnosed with profound hearing loss, I was one of those people who had never heard of them. This video is only three years old, so I really think if someone went around with the same question today, the results would be similar.

We also had the opportunity to talk and make connections with each other. Cochlear took great care of us and most of our connecting was over some delicious food!  They also planned a really fun evening on Saturday. We painted Red Rocks and sipped wine and had a total blast doing it!

I was sad to have the training end because the people there were awesome, but I am glad to say that I have made some good friends from it and am completely energized to spread more awareness about this wonderful technology.  I've even had the opportunity to visit one of these fabulous people at their home already (more on that soon)!

Disney World Vacation

Things have been so busy for me that I am finally trying to catch up on this blog.  Last month, my mom, my sister's family and my family took a trip to Disney World.  The kids and their cousins had a blast together and we are looking forward to going again with them in a year or two.

We all flew out on the same airplane.  Logan and Jasmine were excited to watch the airplanes while we waited for ours. Logan kept pointing out the window, saying "airplane!" with a big smile on his face.  As for the plane ride, thank goodness for iPads and tablets, because both Logan and Jasmine got to watch movies on the plane and they did great.  We even got to test out Logan's special earphones that plug directly into his sound processors.

We arrived at the Resort late, so it was off to bed for an early start in the morning.  It was Star Wars weekend so we headed to the Hollywood Studios to check it out.  The kids got to see some Storm Troopers and Darth Vader walking around. Although my kids are too young to know who they are, they still thought they were really cool! And their older cousins loved them!  We headed to Magic Kingdom after this and our first ride was the carousel.  Jasmine had to have a purple horse, so we found one and Logan rode next to her.  He had a blast on it and cried when we took him off.  This became a pattern after all the rides. I guess we really do have a daredevil on our hands!

The next day we went off to Animal Kingdom by ourselves. We got a bit of a late start so we missed some of the animals during their morning feedings. We were bummed about that, but we did go on a really cool safari where we got to see elephants, giraffes, warthogs, hippos and other animals.  The kids had  a great time doing that.  While we took a break there, Logan started pointing and yelling "bird, bird, bird," which was cool because he had never said the word before or even pointed at one when asked before.

The day before we left, Andrew and Logan had a father / son morning at Magic Kingdom, while my mom, my sister, Jasmine and I headed to Downtown Disney for a princess makeover.  She was very apprehensive to sit down and let them do her hair and makeup, which really isn't all that surprising since she is pretty shy around new situations.  I actually had to bribe her to get her to do it.  See, she LOVES stuffed animals so I told her we would go buy her one after we finished the makeover.  She immediately decided to do it and had so much fun once they started it.  We met up with Andrew and Logan at Magic Kingdom in the afternoon and got on as many rides as we could, since it was our last day there.  We had planned to leave when the parade started since we had seen it a couple of nights before. However, I decided that I wanted to look in one last store on Main Street, Andrew and I got separated and couldn't get a cell signal, so I went out to wait for him where my sister and her family were going to watch the parade. Well, to complicate things further, my mom, who was going to leave with us, decided to go see if she could find us in the store.  We must have all crossed paths because Andrew and I wound up watching the parade with my sister and my mom watched it from the other side!  I'm glad this happened because we had a much better view and the kids REALLY liked the parade.

The next morning, we  were up by 4:30 a.m. to catch a shuttle to the airport.  And as if we didn't have enough excitement during our trip there, Jasmine starts getting sick on the shuttle and got sick a few times during our flight. I'm so glad we had a direct flight.  But to put the exclamation on our trip, my dad was supposed to pick us up from the airport in my SUV and he finally got in touch with us when we were at the baggage claim.  My SUV had a flat when he went to get it so we had to take a 30 minute taxi ride home!

Regardless of all that drama, we had a fabulous time at Disney World and Logan had some great listening and language opportunities there.  While we were there, Logan said bird, bus, fish, horse and a few others that are escaping me for the first time. 

Feeling Honored

Today Andrew and I attended the annual end of the year dinner that is put on by the Sunshine Cottage Parent Infant Program staff for the parents of children enrolled in the birth to three program.  It was great to see some of the friends we've made there and chat. It's funny, but this is one of the few places that I feel like a social butterfly (which is a weird feeling since I am really a very shy and reserved person). And it is one of the few places where I really have a hard time figuring out where to sit since there are so many people to catch up with.

As some of you know, since the time that Logan was diagnosed I have tried to find ways to contribute to parents and children at Sunshine Cottage and really any parents and / or children with hearing loss.  In a way, it has become a mission for me.  Because of this, last year I started a meetup group for children with hearing loss and have done what I can to do fundraising for Sunshine Cottage and other organizations for people with hearing loss.

Today at the dinner I was completely honored and humbled by the beautiful gesture of recognition from the Sunshine Cottage staff.  They presented me with a plaque and a beautiful picture of a heart that was drawn by a 9 year old student at the school.  She even called the piece "Becky's Caring Heart."  How beautiful and thoughtful is that?!  I am overcome with emotion and joy and I only wish I could do more!

Audio Update

Today Logan was scheduled to do sound booth testing at Sunshine Cottage.  During these sessions, Logan, his advisor Lindsay, and I sit in a sound proof booth while Marci, his audiologist, will play tones at different decibels and frequencies to measure what he can and cannot hear.  We usually do this every 3 months or so but it had been a while since Logan managed to get sick every time we were on the schedule.

I am so proud of how well he did today.  Not only did he cooperate long enough for Marci to get all the information she needed, but he is doing phenomenally well with his implants and learning to listen.  We were able to keep him entertained long enough to listen and respond to those boring tones for about half an hour.  Anyone with experience with a 21 month old toddler knows that this is no small feat!  We actually thought we lost his attention about 10 minutes in but were able to get him back into it.

The last time we did a booth session, he was responding behaviorally between 20 and 25 decibels (around the sound of a whisper).  This time, he responded between 10 and 20 decibels, with 10 being the sound of breathing. The great thing about these results is that his hearing is measured by his behavioral responses so it is not necessarily his threshold for hearing.  But what is even more amazing and what had me totally floored is that Marci actually got a response twice (once at the beginning and once at the end of the session) at 0 db, which is almost complete silence. Lindsay and I didn't even hear that one!

Below is his latest audiogram, which is simply a graph that shows a person's hearing thresholds for various frequencies.  When Logan had his hearing aids, his thresholds were always inside or below the greyed out area, meaning he did not have access to a lot of the sounds in the English language. But now, as you can see, he has access to most / all the sounds in the English language and basically has better than "normal hearing."

Physical Therapy Update

Logan had his physical therapy session today and, since I had asked how he was doing a couple of weeks ago, his therapist went ahead and did an informal evaluation today.  I was still concerned that, although he seems to be doing well with his gross and fine motor skills, that he was still lagging behind.  Well I am happy to report that my almost 22 month old son scored at a 22 month old level for gross motor skills and at 31 months for fine motor skills!!!

When we first started physical therapy when he was around 6 months old, he was about 3 months behind.  He was rolling over but was still very wobbly with his head control and was not even close to sitting unassisted.  But today, my active son runs and climbs all day long and has caught up with his peers.  I am so proud of him!

He will continue his physical therapy twice a month until his annual review in August.  His therapist wants to see him kicking a ball better, going up and down stairs well and jumping before she releases him. 

Our Little Bookworm

We have a very consistent routine for the kids before bedtime (and naptime).  After the kids get their teeth brushed, they get their bedtime stories.  Logan gets three books and Jasmine gets two (since hers are so much longer). 

For a while I've had some trouble with getting Logan to sit down and listen to his stories.  I would end up following him around with the book in hand while reading it to him so that I knew he could hear it well enough.  Those of you that know Logan, know that he is on the go every waking hour so I'm sure you can picture me chasing him with a book in hand!   He has always been better about sitting for his daddy to read him books, but his daddy claims it's because he is boring and makes him tired, haha!

Over the last month or so, I have been working on getting him to sit in my lap to pay more attention to the books and vocalize more. It has really started to pay off too!  It started with him sitting for one book and gradually we got to the point where he would sit for all three. 

The really cool thing that has been happening for the last couple days is that when I am done with book three, he will get up to go get another book, give it to me, and sit back down on my lap.  Today, each time he brought me a book I asked him if he wanted me to read it, he would shout "YES!" and then sit down in my lap.  And I say each time, it's because I wound up reading him six books for bedtime this evening.  But really, how could you say no to such a cute face!!!

And the Words Are Coming

It is easy to get impatient waiting for Logan to start saying more words since he is already 19 months old and we spend so much of our day just talking and talking to him.  He has had his implants turned on for 6 months now and, so far, has said a handful of words over the last couple of months.  Jasmine was an early talker so we always try to be careful not to compare him to her, especially because, at nearly 3 years old, she can really talk your head off!

Cochlear implants actually don't restore a person's natural hearing.  Instead, they provide a different way for the brain to access sound. Electrical signals are transmitted into the internal device which stimulates the auditory nerve and sends those signals to the brain for interpretation.  My point in describing this is to explain that the cochlear implants provide a completely different way to access sound, and because of this, when they are first turned on after surgery the recipient's hearing age is 0, like a newborn.  And since Logan's hearing age is 6 months now, we can expect him to make babbling sounds like a 6 month old would (this is the average for children implanted at 1 year), which he does.   

Our goal is for him to 15-20 words by the time he is 2 and to catch up to his hearing peers by the time he is 3.  Based on his progress so far, I think this is a very realistic goal.  Just today he said 3 new words!!!!  He said "flush" (or "ush"), he said "trash" (or "ash") and "yuck" (or "uck").  Andrew said he thinks he also heard him say "sit" to Blackjack.  This coupled with him saying "Jasmine" (or "jah ihn") earlier this week, we are well on our way.  He has already managed to say at least 10 words these last 6 months!  I am just so proud of my little man!

Half a Year of Hearing

I can't believe it's already been 6 months since Logan's ears have been turned on!  He is such a different boy today than he was before he had his implants.  He has always been a happy boy, but he has really seemed to blossom over the last several months. He is such an explorer, always trying to take things apart and put them together again (like his daddy).  He is so independent and likes to feed himself.  He has gotten quite good using his fork and spoon.

Logan is on the go all day long. He is walking very well now, has gotten pretty good outside on uneven terrain and is trying to jump now.  Because he is doing so well, we were able to decrease his physical therapy services down to twice a month.  At this point, it is just practice for him, but his physical therapist will keep him on her service until he can jump, climb stairs, kick a ball and a few other gross motor skills.

If you recall, we also see a teacher from our school district, our advisor from Sunshine Cottage, and a deaf educator and speech therapist from Easter Seals on a weekly basis.  We added the speech therapy a few months ago to help Logan along a little more. We started with a different therapist than we have now but Logan really did not connect with her and most of his session consisted of him crying. So I asked for a different speech therapist about a month ago, but the week we were supposed to have our first session was the week that the flu struck our house.  We finally met her last week and we absolutely loved her.  She is on a whole other level than our first speech therapist and is perfect for Logan's team of teachers.  She came for her second session with Logan today and he immediately smiled and walked over to greet her!  That made me so happy because you can tell when he really connects with his teachers. He always gives hugs out to them and sometimes doesn't even want to come back to me!

As far as Logan's language progression, he is getting more and more words receptively every day!  Today Andrew said "Logan, hug mama" and he immediately looked toward me and came and hugged my leg.  Also, when I tell him "let's go upstairs" he will stop what he is doing and walk to the gate at the bottom of the stairs and wait for me there. He even goes to the door sometimes when I say "it's time to go!" 

Logan has also been babbling and imitating sounds more and more.  His latest attempts to say words have been "bath," "up," "uh-huh" and "on."  And much to Andrew's delight, he has finally mastered "dada!"

It's been a lot of hard work these past six months, and more of it is coming, but I can't wait to hear the payoff when he finally starts talking.

Loving the Love....From Sunshine Cottage

It is easy to tell when Logan's cochlear devices are working properly.  The front of each of his sound processors has an indicator light that blinks green when it is connected and working properly. If there is a problem or the coil is not sitting on his head correctly the light will blink orange.

For the past few weeks we've had intermittent problems with Logan's right side device. At first it would start blinking orange until we removed the coil from his head and repositioned it.  I finally solved this issue when I changed out the cable that goes from the processor to the coil that sits on his head.

I thought all our issues were over until a few days ago. I've made a habit to check the indicator lights throughout the day to make sure everything is working so that he gets as much access to language as possible. Well several times throughout the day I found that the sound processor had powered off.  Each time this happened, I turned it back on and made sure I locked the buttons just in case little fingers were getting to them.

Today I called Logan's awesome audiologist Marci from Sunshine Cottage about the issue and we did some troubleshooting together. She was leaving early to spend the weekend with family in another city and gave me her cell phone number in case I needed anything. She even called to check in with me after she left work.

Everything seemed to be fine until we got home from picking Jasmine up from her preschool. When I got Logan out of the car I noticed his processor was off. When I went to turn it on, nothing happened! I tried for several minutes and still nothing. So I tried a different, fully charged battery and it still didn't turn on. I immediately got out my phone to call Marci to let her know what was going on.  I can't even begin to express how awesome she is and how well she takes care of us.  She immediately called Cochlear Americas to overnight a premapped replacement sound processor. To ensure this could even happen, she had to take all Logan's mapping information with her on her trip.

I am so amazed by the love Logan has received from the wonderful women that work with him. This is just another example of how much they care for him and his success. Marci didn't have to do all this for us. She could have told me that I needed to call Cochlear Americas and work it out with them. But instead she chose to take time while she was off the clock to ensure Logan gets what he needs. She even asked me to let her know as soon as it arrives so that she knows he has it and that it is working properly.  We are so lucky to have these women in our lives and I am thankful for them everyday.