Auditory Verbal Therapy

When Natalie was diagnosed with profound hearing loss at 6 weeks, we were immediately introduced with a group called, NC Early Intervention Program For Children Who Are Deaf or Hard of Hearing. We were assigned a parent-infant educator who comes out to our house weekly for 1 hour sessions doing auditory-verbal therapy (AVT) for Natalie.

Many people asked us at the beginning if we were learning sign language and the answer was simply no. We want Natalie to learn to listen. We don't want her to rely on lip reading, signing or cued speech. We want to force her ears to work with her cochlear implants. (later on down the road we/she may like to learn sign language as another form as well.)

pointing to her airplane

As of January 24th, her hearing age was 0 (like a newborn) so we are coming up on 1 month of hearing! We are seeing great progress already. One of the first learning to listen sounds we work on is the airplane  "ah-ah" sound. We have been doing this since she was a baby, and although she probably never heard anything even with her hearing aids on, she was able to make that sound just as a normal baby sound. (she is definitely saying it a lot more now.)

I took this video with just my digital camera so it is kind of grainy. Hoping to get a new video camera soon.

With the AVT we really try and get the "ah-ah" sound in a lot. Whether we sing it, say it as we are feeding her, etc. Trying to find ways to sneak it in. The other kids even know it and will get the toy airplanes out and practice with her. Well, it has paid off. She is really understanding so well. We can now say the first part "ah" ---- and she will finish it off with the other "ah." It has been so wonderful and exciting to watch her progress.

"ah-ah"

We have many, many learning to listen sounds. This week our goal is working with a top and saying "round and round" in a long sing-songy voice. The goal will be to have her hear what we are doing, and hopefully repeating back to us the same pattern or duration of sound. Other goals are to be able to have various learning to listen toys out (train "choo-choo", airplane "ah-ah", cow "moo", and when we say the sound to see if she grabs the correct toy.  Of course this will come with a lot of practice and age.

and yes, all the learning to listen toys do taste good!

 She really is doing so well and it has been exciting to see the baby steps of learning to listen.

Cochlear Implant Headbands

Babies and cochlear implants can be sort of tricky. Keeping the ear piece (sound processor) on her ears that is. I had heard about joybands from a friend (you can check them out here) but wasn't sure if that was what we were looking for. 

I googled cochlear implant headbands and came across a woman's blog that is a hearing blog for her daughter. Her daughter wears these headbands and after seeing them I wanted some for Natalie. After getting in contact with her (thanks Melinda!) we were able to find out who she ordered hers from and get ours as well. We have a white one and a pink one. We love them! They fit so nicely on Natalie's head, there is a place for the processor to fit in with the elastic, we can wash them if needed and I have been able to put cute flower clips attached to the headband. Win-Win! So far, Natalie doesn't seem bothered by the headband and has left it alone. 

what a cheeser!

As a side note, we take off her "magic ears" at naps, bedtime, and long car rides where we know she will fall asleep. She is supposed to wear her CI all waking hours and I always feel sad to take them off. I want her to hear as much as possible. 

Name Pancakes compliments of Grammy

Natalie with Big Sister Sophie

Clap, Clap, Clap!

Natalie is making great progress. She is hearing clapping just 10 days post activation. It was exciting to video the changes she is making. You can notice from the video that although I am on her right side making sound, she turns to her left and follows it all the way around. It will be exciting when she gets her 2nd side activated in a few months.

Natalie's Cochlear Implant Activation Day

January 24th was the Big Day!

We got to experience a little miracle at our house. Natalie’s CI activation was January 24th. While we didn’t see BIG changes, it was still very exciting and there is something in the video. You can tell her world just changed. You can see it in her eyes. We love her to pieces and are very excited to work with her as she explores and learns this new 
world.

We have 4 programs that her processor is programmed to that we have to work our way up to in the next 2 weeks. I turned her up to program 2 today. By her 2nd week appointment, we need to be on the 4th program for a few days. They will then re-map her processor and we will see them again 3 weeks later. We have to do this very gradually. 

Let me explain a little bit about what she has to wear, etc. She has a piece that loops around her ear; this is the processor (computer) part of everything. It has 2 microphones on it that picks up the sound. When the light is green it means it is working, if it is orange she isn’t hearing anything. The round circle piece is the coil and it has a magnet on it (that can be adjusted) that magnets to her head to the implanted piece. If this is off, she doesn’t hear anything. Amazing, right? The piece clipped to her back is just the battery for now. There are different ways she can wear it, there is a rechargeable battery that can hook to her processor around her ear, but that is too heavy for her now. I googled and found some good headbands I am ordering to help hold them on her head better. For now we are just using a large headband that works.

We made a cute build a bear for her. They actually sell hearing aid accessories for the bears, I ordered them and am going to make them into little CI’s for the bear. Natalie would prefer to eat them.. ha ha.

In the meantime, crawling is her thing.

Post Surgery - Recap

I had a few posts on our family blog I wanted to include on her hearing blog, so this was taken from that on January 20th:

So it has been 2 1/2 weeks since Natalie’s surgery. Her recovery went so much better than I ever thought. She did have some swelling but it went away pretty quickly. The crazy thing is her ears stick out some, but we have been told that will get better after a few weeks. 

2 days post surgery

4 days post surgery (and ice cream for the 1st time) 

We go up on Monday to have her cochlear implant activation. We will be posting that video as well.

Nana had came to help out with our crazy week

Already feeling much better

my cute girls

Natalie's Surgery Day - January 4, 2011

I wanted to start a blog to track Natalie's hearing progress with cochlear implants. It is a gradual process for us, but so much has already happened in 10 days!

Lets recap from her surgery day first, so I have it documented on this blog. I took this from our family blog:

January 4, 2011

We have been waiting for this big day for a long time, the time Natalie would get her cochlear implants. Since birth and finding out she was deaf, the term cochlear implant worked its way into our life and now has become a reality. 

Lets back up to the weekend before... I got sick, really sick.  I had been in bed all day Sunday. I finally checked my temp that afternoon and it was 103. Since we were leaving at 7:30 the next morning to head to Chapel Hill, Tim and I thought we should go get me tested for strep throat at the ER, so we were there from 11:00-1:00 Sunday night. They gave me an injection that night and by the next morning I was starting to feel better.

Since I was still contagious, this is how I got to look for the next day and a half.

Monday morning we headed up to Chapel Hill for all the pre-op appointments. Our drive up went great. The roads were good, weather good. I remember thinking how lucky we were since you never know what to expect in the winter. We had a 10:00 am speech and language evaluation first at the CCCDP (this is the audiologist office in Durham). We finalized things with the implant processor and then headed to lunch. We were planning on staying at the Ronald McDonald House that night, but since I had strep, we were able to get a hospital rate at this hotel which worked out better. 

We had a 3:00 pre-op appointment with our ENT Dr. Buchman and then headed over to the pre-care area where they talked about all the pre-surgery stuff. Originally we thought she would be the first surgery, but since we were doing bilateral and she was staying overnight, we got bumped last, so her surgery start time was at 11:30. By the time we finished, it was dinnertime, so we headed over to P.F. Changs which was nice. We are usually grabbing fast food when we are up in Chapel Hill because we are usually doing it in a one day trip and just in a hurry to get home.

 

We had great fortune cookies.. they said:

Natalie's:  "Happier days are definitely ahead for you."

Tim's:, "Big Journey's begin with a single step."

Melissa:, "The only sure thing about luck is that it will change." (I needed some good luck.. too much bad luck lately)

By the time we got back to our hotel, we had to give Natalie a shower with an anti-bacterial soap. We made sure she ate well before going to sleep. They told us she could have breastmilk up to 3:00 am and then clear fluids (juice, pedialyte) until 8:15 am. She was super exhausted for bedtime. We decided to wake her up at 2:30 to feed her some breastmilk. Of course since I had been sick and didn’t want direct contact with her, I had been pumping most of the weekend.

I was so nervous Monday night after she went to bed. I just couldn’t wait for the surgery to be all over with.

Natalie awoke for the day at 7:00. We got ready and headed to the hospital around 9:00. She did fine being fasted and we were glad we had woken her up at 2:30 for that last bottle. Check-in was fast and we proceeded to the Children’s Surgical Waiting Room for about 45 minutes.

She looks like she is praying in this picture.

We finally got called back to the pre-anesthesia area where we went over her medical history. Natalie fell asleep in Tim’s arms and she was just so precious. By this time it was 10:15 and I know she was probably starving. 

For anesthesia, they told us if babies tolerate it, they usually just put a mask over their face until they are relaxed and then they can get an IV in. Since Natalie was still sleeping, they thought it would be best to hand her over to them since she was already relaxed... and so we did. They took her back at 11:00. She did wake up when they took her, but she was ok and not scared. It was so hard for me to see them walk off with her. She had no idea what was about to take place, or the significance of this day. It breaks my heart she had to go through this.

And one last picture of her pre-implanted ears. I just love her so much. Too bad those darn ears just don’t work right but SO thankful we have options for hearing.

I was very sad and emotional the whole morning. Tim and I just waited in the Children’s waiting room. They called from the OR around 12:00 saying they were underway and everything was going fine. It took a while to get her prepped since they were doing both ears. Tim and I went to get lunch at the cafeteria and honestly just picked at our food. We were hungry but couldn’t eat. It was hard knowing your little baby girl is in surgery at that very moment.

I love how this picture shows Christ in the surgery room.

Our Princess Leia

We went back to the waiting room and they called around 1:00 saying they had finished the first side and were starting the second side. That was really nice to hear. We were planning on the bilateral, but were not sure if she would have any complications that would make him stop at just 1 side. She was done by 2:30 and I was able to see her back in the recovery area about 20 minutes later.

I just got to rock her, we gave her a bottle and some pedialyte and she was pretty out of it for the most part. After being back there for 45 minutes, they wheeled us into the temporary stay unit for the night. We knew she was staying overnight for 23 hour observation, but we thought she would have her own hospital room. This was just a curtained off “space” that all 3 of us got to sleep for the night.

Natalie did great over night. She woke up a few times for her Tylenol (I can’t believe that is all that is needed for pain). Tim and I didn’t sleep well at all. We 2 total chairs to sleep on: 1 that unfolded down and the other a recliner. Both extremely uncomfortable. We were so lucky to have a girl next curtain over throwing up all night too. We couldn’t wait to get out of there the next morning, so once the resident rounded on us, we took off. Natalie was doing so great, we didn’t need to wait for Dr. Buchman to round on her.

We took a different way home from Chapel Hill .. not to my liking. Tim put it into his GPS and to make a long story short; don’t always trust your GPS but use common sense too. It was uneventful, and the drive was fine, it was just not on the interstate. But Natalie slept almost the entire way home.

We came home to these signs the kids made for Natalie. When we drove up I got tears in my eyes. They love her so much!

This is her the morning after... she was in good spirits. The kids were excited to eat their m&m’s she brought home to them. So thankful to Grandpa Larson for watching our busy kids while we were away. He did a great job!

By Thursday, Natalie had already taken her bandage off. The piece on the forehead started to slip over her eyes. I tried reinforcing it with tape, but went up to her crib that afternoon and the bandage was around her neck. I guess she was done with it. The ENT office said they like them on til Friday, but it was ok to leave it off.

The next day she seemed more puffy. Her eyes were swollen and her ears stick out funny (but will go back to normal). 

By Friday afternoon/Saturday morning, she started looking more like herself and has been doing extremely well. I am so impressed with how well she is recovering and doing. She has such a big heart, did amazing in the hospital and has been such a sweet girl. 

I am so thankful for all the love, support and prayers that have been sent our way. We are so thankful for wonderful family and friends. Now, we just can’t wait until Janary 24th for her activation day, the day she will hear for the first time.

The Nat'ster - 9 Months

We have hit that really fun, I love having a baby phase. Ok.. we always love having a baby, but 9 months is always a fave. But, I must say, I can see some boredom with Natalie. While she doesn’t know any different, and she is certainly calm and patient with all of us, I can see a big difference in the way she acts and reacts compared to kid 1 and kid 2. 

Obviously this would be such a fun age for her to explore lots of various sounds, things that light up, shake, make music when you accidentally bump into them. A lot of that goes unnoticed because of her hearing loss. 

Again, she doesn’t know any different so it is no big deal for her; mainly me. Which is why we are so very excited for the technology of hearing with cochlear implants and giving her the gift of hearing which is so important. I am so excited to see the joy and excitement it brings into her life. It will start of gradual, but we will make milestones this year.... so very excited.

At 9 months, Natalie is crawling all over the place. I don’t remember the exact day (I will have to look back) but somewhere between 8-9 months she decided to give it a whirl. She goes everywhere now, and has started pulling up to her knees too. Since most of her toys are no fun for her, crawling and exploring have become her 2 favorite things. I am sure once she masters pulling herself up and cruising, she will love it. She loves to crawl to the fireplace and see her reflection in the fireplace door. 

Natalie also got tubes in her ears this month prior to her CI surgery. She had fluid in the left ear and tubes were necessary or we wouldn’t be able to get her implants. She did great though!

She has 2 bottom teeth she has had for about 6 weeks and loves to show them off when the camera is around. She is so cute for the camera, always doing such a big “cheese” and seems to know exactly what I am doing when I pull the camera out.

This is some pictures with Nat’s audiologist up in Chapel Hill. They love her to pieces. Since she won’t be wearing hearing aids anymore, we will have a new team of audiologists that just do cochlear implant kids. We will miss Pat so much!

Miss Natalie’s 9 month Stats:

18 lb., 10 oz. (38%)

??? inches (can’ t find my sheet)

Natalie loves to eat, but is not a fan of anything chunky yet including puffs. She is content to just stick on the baby food for a while. But she does eat a nice variety and we are ok with that. 

COMMENTS:

Grammy

Such darling pics!!!!   Thanks for sharing!  Can't wait to see her in person in a few weeks!

Friday, December 31, 2010 - 11:15 PM

Melanie

I can't believe you had a white Christmas!!!!!  So fun!  Where did you find the sled?  They don't sell those things in Charlotte.  Natalie is super adorable and I love that cheeser grin.  Best of luck in the next couple of days!

Monday, January 3, 2011 - 08:12 PM

Shelley Kay

Nat has such a pretty smile! I love it! I can't wait to see all the new exciting things your family goes through this year!

Tuesday, January 4, 2011 - 11:15 AM

Kelly

What a doll! Brad said she has grown a lot.  She is absolutely beautiful and has the best grin! Love it!  What an exciting year this will be for her..and you too! :)

Wednesday, January 5, 2011 - 12:34 AM