December 31, 2012

Time Flies When You're Having Fun!

It has been awhile since my last post. Let's just attribute that to the Christmas season and all the fun we've been having! We have spent the past few weeks driving through neighborhoods decorated with Christmas lights, making ornaments, playing with the train around the tree, and learning lots of new words and sounds.

Audrena has demanded that the Christmas tree lights be turned on each morning when we wake up, to be left on all day. She would walk to the tree, point, and tell us, "Uh oh!" Then she would point at our train and say, "ooo ooo." The "ch" sound hasn't quite come yet, but the high "ooo ooo" certainly has! As we drove past Christmas lights this season, Audrena would exclaim, "OH!"

The holiday weekend was a long one this year. It was nice to be home with the kids for four days straight! One would think that the chaos and sheer noise of voices, television sets, etc that accompanies our family gatherings would be a negative listening environment for Audrena. However, she always proves us wrong. She chose the holiday weekend to have an explosion of speech and language. New words and sounds include:

  • A defined me-ow for cat, rather than missing the e sound as she had been.
  • Quack
  • Eye (and pointing to it as she says it)
  • Mouth (and pointing to it as she says it)
  • Butt (Yep, and pointing to that as well! I inadvertently taught her that one, and she wasted no time showing Aunt Darci where her butt is.)
  • Around
  • In
  • Out
  • Back
  • "Oh no!"
  • Ball
  • I love you (This one is not clear, but it's clear to us that it's what she is trying to say because she uses it in appropriate situations.)
  • She pointed at a chair and told Randy, "Dada here!"
  • She also yelled down the hall one morning, "DADDY!"
  • Yeah
  • Go (She has not said this at home but has been saying it in speech therapy.)
  • Neigh for horse.
  • Barn
  • Hi
  • Bye with a wave more consistently lately.
  • On Christmas Day, Audrena was holding an ornament from the tree, and she put it in her mouth. Our nephew's girlfriend, Jessica, told her something like, "Oh, let's put that back on the tree!" Audrena pointed at her and exclaimed, "NO!" 
  • Amen after our bedtime prayer. I truly love listening to her exclaim "ahhhhh muh." (After all, God has given us many miracles this year.)
She doesn't use all of these consistently all of the time, and not all of them are crystal clear. Most of them are pretty sporadic at this point, but she can say them and has done so more than once. It's like any other child learning to talk. We are also entering what I call the parrot phase. She is starting to repeat things that we say. It might only happen once or twice, but she is making the effort more and more often. It's wonderful!

Audrena's receptive language is really growing, which is really what comes before expressive language. She will respond to certain commands, like if she is in the kitchen and I say from the living room, "Audrena, come here!" She will find me. There are other things as well, but that's a good example.

Yes, I think we have come a long way in under 5 months. I can't wait to see what 2013 brings! Happy New Year to you all!

December 5, 2012

We have an /s/!

Apparently Audrena just needed to get used to hearing the /s/ because she is now responding to it, even with the speech hoop! She is now hearing all 6 ling sounds, which represent the range for hearing speech.

Last week was our last session at USD until the winter break is over in January. It went really well. Audrena was very engaged during the session. I love that she can be in one room with the clinical grad students, and I can be in the observation room with K. (SLP) & J. (Audiologist), watching through the one-way glass because we can be having our own conversation without interrupting Audrena. We were discussing how things were going. I am, by nature, always hard on myself. I always think I should be doing better, no matter what the situation. So K. & J. took a moment to stop me in my tracks. They reminded me that Audrena has basically made a year of progress in just under 4 months. That really put things into perspective for me. I had been thinking she should be saying more words by now, but K. also reminded me that this is kind of like a volcano. There will be all sorts of things bubbling under the surface before we see an eruption of language. I think I needed those reminders! Logically, I know those things, but I always want something more, especially for Audrena because I want so much to see her excel, for her own benefit in life. And as if to tell me I was worrying for nothing, before we left Audrena reached out to me and said, "Up!" Up is something she has said randomly for awhile, but within the last week we have seen more of it and with a definite purpose.

We have also received Audrena's T-comm (photo at about the middle of the linked web page)! It's a new accessory for her Neptune which will fit over hear ear to bring the sound in at a natural placement, at the opening of the ear. Currently, the mic on the headpiece is where the sound is "located" for her, so it is more towards the back of her head. She will likely not use the T-comm for awhile, but it is new, so it is being offered at a discounted price for a limited time. We just knew we wanted her to have it because eventually it will make things like talking on the phone much easier!

November 27, 2012

Programming Changes

I'm excited to say that we are transitioning into doing Audrena's programming here at USD's clinic, rather than driving more than 2 hours each way to Boys Town. While we love Boys Town, it's just more convenient to do things here. We already have a standing appointment every week for Aural Rehabilitation, so Audrena gets speech therapy and audiology services as needed. I have said it many times before, and I'll say it again. USD is very fortunate to have Dr. M (whom we just call by her first name, J.). She is an asset to this entire area because we just don't have a wealth of people who know cochlear implants, and the icing on the cake is that she is just great.

Last week we met with J. to get Audrena's new ear mold for her hearing aid, and we had hoped to do some work in the sound booth. Audrena is not getting the /s/ ("sssss"--think "snake"), so we knew she needed some adjustments to her programming in the high frequencies. As it turned out, Audrena was ready for a nap and in no mood to be in the booth. J. did some other nerve measurements, called NRIs, and because Audrena wouldn't cooperate for any other testing, she made adjustments based on those. When Boys Town had done their threshold testing in the operating room, they told us that electrodes 15 & 16 may or may not be useable. So because those electrodes handle the high frequencies like the /s/, and because they still were not testing good for J., she changed the programming to turn them off. As she explained, that would shift those high frequencies down to electrode 14. This would hopefully give Audrena access to those sounds that she was not previously hearing. She also made some changes to Audrena's M levels, which doesn't mean much to those who don't understand implants.

Over the weekend, we watched to see if Audrena seemed to be hearing better, specifically the /s/. I got responses from her just a couple times, and only in really quiet situations. So we probably will need to keep working on things. J. wants to see Audrena when she is sleeping to perform some testing on a reflex in her inner ear. It's hard for me to explain because, while I understand the basics, it's still a bit above my head. Basically, there is a reflex that happens in the ear in response to sound, and that reflex is pretty golden for programming CIs for a small child. It corresponds almost exactly to where the levels need to be set. I'm not sure when we'll attempt that, but I do know Audrena will have to be really tired. We would have to rock her to sleep and hope she stayed asleep when they stick the piece in her ear. It was a challenge for the first ABR, and she's older now, so it will be interesting. We'll see what J. thinks on Thursday and go from there.

In the meantime, "uh oh" and "more" are regular parts of Audrena's vocabulary now. She also gets really excited to see dogs and barks in response. Her "woof woof" is not very pronounced yet, but she's trying. She has begun to vary loudness and pitch as well, which is great. K. is starting to use the speech hoop now for discrimination in therapy sessions since Audrena was doing so well without it.

I also just got word from surgery scheduling that the CT scan is scheduled for March 7, 2013. Let's hope for an all-clear! We can't wait till Audrena can have two "ears."

November 15, 2012

"No no no no, Mama!"

Here is a video clip of Audrena with her new favorite thing to say. She loves to shake her finger at us and say, "No no no no!" You'll see in the video that at this point it still comes out as "Mo mo mo mo." This isn't the most clear video in terms of how things sounded, but the other clips I have are a poorer cell phone quality, so I'm using this one for the blog. Her "Mama" at the end doesn't sound that much different from the "mo mo" in this particular clip, but others are better. We were so excited to get some video of Audrena talking because normally when the camera comes out, she stops performing! I love her little giggle before she says it.


Audrena has also been using "more" very regularly now, and also "uh oh" fairly regularly. What a joy to hear her little voice forming words!

Way to go, Toys R Us!

I was browsing The Great Big Toys R Us Book and noticed something neat. On page 31, they feature a boy with a cochlear implant next to the Crayola easels. Way to go! Now if we could just see more companies featuring CI kids, Down Syndrome kids, kids in wheelchairs, you name it. I would love to see it!

Interesting things are on the horizon!

Med-El has come out with a unit called the RONDO that combines the processor with the mic and headpiece. It eliminates the need for cords or anything worn on the ear. I have my questions. The first one being wouldn't a person need a stronger magnet, thus risking skin breakdown? I think it wouldn't be great for a toddler or child, as there is a greater risk of losing the entire processor. However, with that being said, I think great things are on the horizon for implant users. I could see this being a fantastic option for an adult. It's almost a complete "freedom." I foresee the other companies eventually following suit to develop a similar product, as they are always competing to give their patients the best technology. Here is a link from the Cochlear Implant HELP website to the information on the RONDO.

http://cochlearimplanthelp.com/2012/11/08/med-el-announces-the-rondo-single-unit-processor/

November 8, 2012

She has a sucker stuck in her hair.

I can't believe I forgot to share this story when it happened! Last month, my sister came to spend the day with the kids. She took Kelton and Audrena out to lunch, and after they picked Reyana up from school they went to a carnival in the park. Then, since she had my van, they picked me up from work.

On our way home, we stopped at the grocery store for some supper items. Reyana, Kelton, and Audrena were all squished into the race car shopping cart. As I was paying for our groceries, Audrena was squirming around in her seat. Her implanted side was facing away from the cashier, a high school-aged boy. As she turned very briefly, he caught a glimpse and said to me, "Ummmm, she has a sucker stuck in her hair."

I explained, "Oh, that's not a sucker. It's a cochlear implant. She is deaf, and it allows her to hear." He had this mortified look on his face, and by that time Kelton had climbed out of the cart and bolted for the door. I took off to catch him, and Darci stayed with the girls as she paid for her groceries. I could see her showing him the different components of the implant and explaining how it works.

She and the girls caught up to us, and as we all got into the van we were laughing so hard that the tears were just pouring out of our eyes! We couldn't wait to get home and tell Randy the story. That poor cashier was so embarrassed, but we had the opportunity to educate him a bit about what a cochlear implant does. There are three other people in town (that we know about anyway) that have them. Now he will know what it is when he sees one.

A sucker. It does kind of look like that at a glance. Audrena was wearing her "tropical sea" colored headpiece, and the cord is white. So I have hung onto that sucker story because some days if I don't laugh I will cry. It's better to laugh, and that cashier gave me a good reason to. Thankfully the bad days are getting fewer and farther between, and the laughter is taking over. And what can I say? I love my little red-headed, four-eyed child with a hearing aid and a sucker stuck in her hair!

30 Years of Cochlear Implants!

A friend pointed this article out to me, and of course I had to pass it on.

http://www.foxnews.com/health/2012/11/05/cochlear-implant-celebrates-30th-anniversary/

The part of the article that surprised me was this. "Weber said about 52,000 Americans have been implanted, but the number of Americans who can actually benefit from an implant is around 1 million."

Had Audrena's left side implant not been delayed, she would have been somewhere between Boys Town's 495-499th implant. But there are 1 million other Americans who could benefit from a cochlear implant. Now, that's not to say that all of those 1 million people should be implanted. We all know that, for various cultural and lifestyle reasons, they're not for everyone. The statistic amazed me, though. 52,000 is such a small number in comparison to 1 million, and it's a small number over a 30 year time frame!


October 31, 2012

The progress continues!

Audrena is now babbling like crazy. She is combining sounds in random patterns, such as "mawadadadamamwa." This is part of the natural process as babies learn to speak, and we are excited to see it happening!  She also said "ball" a few nights ago while reaching for her ball. Monday, I was walking with her and saying, "Walk, walk, walk!" She repeated "walk." I'm not sure if I mentioned it before, but last week at USD's speech session, she was also saying "on" and "off." Audrena also does more of the animal sounds now and loves "Brown Bear, Brown Bear, What Do You See?" She is also using "more" frequently now when she wants more of something. She also says "mwa" for kiss. Last night, she pulled out the toy house that I've talked about before. It has the light switch, and we use it to practice "turn the light on/off." She has now discovered the doorbell and continuously rings it, smiling like she is doing something really cool. I love all of this progress!

Just another update

For the most part, the appointments at Boys Town went well. Dr. L. took one look at Audrena's incision and said it was not infection. As it turns out, what we thought was pus was actually her body spitting out stitches that had not dissolved properly. He also removed the packing from her ears. One of the fat grafts seemed to take, but her ear drum was retracting a bit from negative pressure. He will be keeping an eye on that, and if need be, he will place a tube in there again. The other fat graft did not take, so he will do a cartilage graft at a later date.

The ophthalmology appointment went about as we expected, except for one little hitch. As it turns out, I misunderstood something, and Boys Town does not actually do the ERG test. Omaha Children's Hospital does it. So that was delayed until we can get things scheduled. The doctor did, however, do a thorough exam. He said he didn't see anything that concerned him, but because she is deaf, he wants to ensure that sees the best she can possibly see. So he prescribed glasses to correct some farsightedness, and he hopes to also correct the strabismus with them. He will see her back in 6 months. We did order two tiny pairs of glasses last Friday, and they will be in this weekend. I thought it was important to have a spare pair because you just never know when something will get broken! She will have a blue pair and a light brown pair. Keeping them on should be quite an adventure!

Audrena took a nap before the programming appointment, so she was very cooperative this time. However, she was also congested with a cold, so her booth testing was still not good. We will repeat it at USD again soon to make sure that's all it was since she did test well at USD in between these last two Boys Town programming appointments. It seems strange that congestion would affect hearing with a cochlear implant, but many implant users and Audiologists have told us it does. Audrena continues to say and do things at home that make us think she is hearing just fine. We were excited that J. programmed one of the three slots with Clear Voice! Clear Voice filters out background noise like road noise in the car, fans, the dishwasher, and other things like that. It will help Audrena hear better in certain situations. J. also adjusted the programming so that we can be sure Audrena is hearing the "sss" (/s/) sound, which was the only ling sound she wasn't able to hear.

On Monday, Audrena was fitted for a new ear mold at USD for the hearing aid. She will have red and clear swirls this time. Hopefully it's the last ear mold we will need before the next implant surgery!

October 25, 2012

Hear to Learn

A friend of ours has been very involved in a parent-driven initiative to improve the classroom hearing and learning experience in the Lincoln, NE school system. Hear to Learn is an excellent program, and it started me thinking about not only Audrena's listening environment when she gets into school, but also Reyana's and Kelton's.

Soundfield systems involve a microphone worn on a lanyard around the teacher's neck. It carries the sound to speakers around the classroom, creating sort of a surround sound effect so that the teacher's voice surrounds the room, distributing the sound to students all over the classroom. (These are my own words, so not really very technical, but you get the idea.) They are a great benefit to normal hearing students, not just the hearing-impaired.

I had heard from another parent that the Vermillion elementary schools would be receiving soundfield systems in the classrooms within the next 5 years. My curiosity was piqued, so I e-mailed Reyana's principal to ask about it. She replied that, due to the statistic that students only hear about 50% of what the teacher says in the classroom, the school board had created a 5 year plan for the installation of the soundfield systems. That was several years ago, and we do now have the systems the classrooms! As it turns out, I could have just asked Reyana. Her teacher uses it daily. I was thrilled! Yesterday afternoon during our parent-teacher conference, I brought it up to Reyana's teacher, explaining that I was so excited to hear that she was using the soundfield. She was happy to demonstrate it to us, whispering from the front of the room. It was crystal clear in the back of the room. Imagine what a difference that makes for the students!

On a related note, the SD School for the Deaf Service Coordinator (I hope I got that title right) stopped in to see us at our genetics appointment. She used to be the outreach consultant for our area and had some really great things to say about Vermillion and the school district. She basically told me that if we could have landed anywhere for Audrena, this is the perfect place to be. Once again, I am feeling very thankful to God for bringing us to Vermillion 9 years ago. At the time I was not terribly happy to be moving here, but now I know that this is where we were meant to be.

Back to Boys Town for more appointments.

I haven't posted much about everything that's been happening lately. We've been busy!

Audrena has been walking like crazy, which we love to see. She has even graduated to carrying toys, one in each arm, as she walks. Our physical therapist texted Randy on Monday to say that they had a good session, and he had even noticed Audrena trying to mimic his words at times. Speech therapy has been really good, and yesterday's session was awesome. Audrena has taken an interest in "Brown Bear, Brown Bear, What Do You See?" She gave good approximations for many of the animals in the books, and also for teacher. Wonderful! Two nights ago, she was thirsty and pointed at her sippy cup, saying, "MORE!" It was very loud and very clear. She has been saying "more" for a good while now, but this was very forceful, almost like, "Pay attention to me!"

Last week, I took Audrena to Sioux Falls for our genetics consultation at Sanford Children's Hospital. We elected to do the Otoscope testing. It's a pretty comprehensive test through the University of Iowa, and although the time frame for results is 6 months or more, it tests for some of the specific conditions that we want Audrena tested for. They also did an EKG, a urine sample, and a thyroid test, all to test for things that could potentially be related to her hearing loss. So now we wait.

We have had problems with Audrena's scar on the left side getting little sores. We attributed it to her hearing aid rubbing and irritating internal stitches that maybe had not yet dissolved. We would clean it and apply Bactroban ointment, and they would heal. Well, the situation is finally catching up with us. She has an infection, complete with pus. Audrena has an ophthalmology appointment at Boys Town tomorrow to test for Usher's Syndrome, and to have another look at the strabismus in her left eye. I have a feeling the doctor will prescribe glasses to correct it. Anyway, we also had an appointment with Dr. L. to have the packing materials removed from her ears (as part of the fat grafts on her ear drums) and also a programming appointment. I had received a call a few weeks ago that Dr. L. would not be available, and they would need to reschedule. In order for us not to make two trips, I requested that we see Dr. K. instead, so they scheduled us to see him. A few days ago, I e-mailed Dr. L.'s nurse to ask a question about the packing material removal, and I mentioned the incision area problems. She replied back that Dr. L. would be making a special time slot for Audrena, as he wants to see her himself. Given that we have this infection going on, I'm so glad that he is making time for her! Just another reason we love Dr. L.!

October 23, 2012

More Research to Support Earlier Implantation

http://journals.lww.com/thehearingjournal/Fulltext/2012/10000/Journal_Club___FDA_Indications_for_Pediatric.9.aspx

FDA Indications for Pediatric Cochlear Implantation Fail to Reflect Current Research
By René H. Gifford, PhD


"Advances in diagnostic audiology and the creation of early hearing detection and intervention programs in all states and territories have lowered the average age of hearing loss identification to 2-3 months, down from 2½-3 years in the early 1990s. The US Food and Drug Administration’s labeled indications for pediatric cochlear implantation, however, have remained unchanged since 2000 despite this significant improvement.
The FDA recommends 12 months as the minimum age for cochlear implantation. This does not mean that infants under 12 months will not benefit from cochlear implantation, but obtaining behavioral hearing estimates for the youngest infants was difficult. This concern may not be as valid today given the audiologic checks and balances at our disposal for behavioral assessments of hearing and physiologic estimates of auditory function. This may also support the argument for lowering the FDA-approved age for cochlear implantation from 12 months to slightly younger, perhaps 6 to 9 months.


Many developmental changes occur in the first year of life that may be missed in an infant with severe to profound hearing loss. This is true even for infants with appropriately fitted hearing aids because audibility is often insufficient to allow consistent auditory access to spoken language, at least for those with bilateral severe to profound sensorineural hearing loss.
 

Word segmentation — the process of dividing connected discourse into meaningful units such as individual words — has been to shown to develop rapidly between 7½ and 10½ months. (Science 1997;277[5334]:1984.) Infants have the capacity for long-term storage of new words by 8 months, which is an important precursor to auditory-based language learning. (Science 1997;277[5334]:1984; J Exp Psychol Hum Percept Perform 2003;29[6]:1143.) An infant with severe to profound sensorineural hearing loss who has limited aided audibility may be missing out developing these critical auditory-based, language-learning opportunities.

Cochlear Implantation in the Very Young Child: Issues Unique to the Under-1 Population
Cosetti M, Roland JT Jr.
Trends Amplif
2010;14[1]:46


Cosetti and Roland summarized the literature regarding the surgical and anesthetic risks associated with surgery in infants, noting a higher incidence of morbidity, mortality, and life-threatening adverse surgical events for infants younger than 12 months. They explained that the majority of reported concerns and complications were confounded by emergency surgery, for which young and possibly medically fragile patients were unable to fast and thus had a greater risk of aspiration. The authors noted that a number of studies demonstrate no greater anesthetic risk for infants younger than 12 months during cochlear implant surgery.
 

Surgical issues unique to infants younger than 12 months include intraoperative blood loss, facial nerve anatomy, skull thickness (<1 mm), fixation of the receiver or stimulator package, thin scalp flap, and device migration with skull growth. It was reported, however, that these known variables can be moderated with a highly trained surgical team with extensive pediatric experience.

Word Learning in Deaf Children with Cochlear Implants: Effects of Early Auditory Experience
Houston DM, Stewart J, et al
Dev Sci
2012;15:[3]448


A growing body of literature demonstrates higher levels of word and language acquisition, speech perception, speech intelligibility, and vocabulary development for infants implanted under 12 months, even when compared with children implanted at age 2 years. (Dev Sci 2012;15[3]:448; Otol Neurotol 2010;31[8]:1254.) The authors examined whether age at implantation affects a child’s word learning and vocabulary development, looking at novel word learning in 25 prelingually deaf children who had been implanted under 24 months (age range 21.7-40.1 months) and 23 children with normal hearing (age range 10.3-20.1 months). The children were evaluated on speech perception, expressive vocabulary, and novel word learning.
 

Children implanted between 6 and 13 months exhibited significantly better word learning abilities than children implanted between 15 and 20 months. This is interesting because children implanted between 15 and 20 months would generally not be considered as having received “late” implantation. Word learning ability significantly correlated with expressive vocabulary at two years postactivation. Children who spent more time looking at the correct item on the computer monitor corresponding with the auditory stimulus exhibited significantly higher levels of expressive vocabulary.
 

Children implanted between 6 and 13 months not only exhibited higher word learning abilities, but also did not differ significantly from their normal hearing peers. The children implanted later at 15 to 20 months, on the other hand, exhibited significantly worse word learning abilities than their normal hearing peers.

These data were consistent with previous studies also showing significantly greater language outcomes for children implanted in their first year of life. (Volta Review 2003;103:303; Int J Pediatr Otorhinolaryngol 2011:75[4]:504; Ear Hear 2007;28[2 Suppl]:11S.) The authors suggested that early implantation results in better language outcomes, which is likely related to early auditory experience. (Restor Neurol Neurosci 2010;28[2]:157.) They hypothesized that providing earlier auditory experience to the developing brain affords development of cognitive mechanisms that are known precursors to language learning, such as audiovisual integration. Clearly more research is needed to test these hypotheses. It would have significant clinical, familial, societal, educational, and financial implications if research determined that children implanted under 13 months demonstrate age appropriate language outcomes by just 2 years postactivation.

Given the known benefits of cochlear implantation for children with severe to profound sensorineural hearing loss, a thorough revision of FDA-labeled indications for pediatric implant candidacy is well overdue. It is likely that criteria in the near future will include children as young as 9 months, perhaps even younger. A child under 12 months who is healthy enough and adequately prepared to undergo surgery has no major risks for cochlear implantation. The potential benefits associated with early implantation and recommended early intervention may be the key to closing the gap permanently between children with cochlear implants and their normal hearing peers for speech, language, and academic outcomes.

(Dr. Gifford is the director of the cochlear implant program and an associate director of pediatric audiology at the Vanderbilt Bill Wilkerson Center and an assistant professor at Vanderbilt University, all in Nashville. Her NIH-funded research focuses on electric and acoustic hearing, speech perception, spatial hearing with cochlear implants, and preimplant prediction of postoperative outcomes.)"

*Here is my official disclaimer. I am linking back to the original article so as not to infringe on any copyrights. This article appeared on The Hearing Journal's website.*

October 11, 2012

A Little Reflection

I have spent some time today reflecting on the past 7 months. Maybe it's because today was our IFSP review meeting. Maybe it's because I heard about another family starting this journey. Maybe it's because my mind has been on another family whose baby boy will have bilateral cochlear implant surgery next week. No matter what the reason, I realize we have a lot to be thankful for.

We have been on a wild ride this year. March 21st brought the first diagnosis of profound hearing loss. In April, we received a second opinion diagnosis that Audrena is profoundly deaf. In May, we underwent cochlear implant evaluations, and Audrena became a candidate for surgery. In June, we waited for insurance approval. In July, Audrena received her right side cochlear implant. In August, Audrena's life was drastically changed as she received the gift of sound when her implant was activated. She also underwent what should have been her second implant surgery, but the removal of a choleasteatoma delayed those plans. During the past 2 months, we have watched Audrena blossom in ways she never could have without the cochlear implants. And the fun has just begun! I am thankful for modern technology, a top notch surgeon, and talented Audiologists.

When we started this blog, we vowed that we would be honest and real. This is as real as it gets. These past months were the hardest times of my life, and they came just after I lost my mom, my rock. I doubted doctors. I hated my genes and myself, convinced that I was to blame for Audrena's disabilities (and it may still be genetics, but I will revisit that when the time comes). We cried. We prayed. We begged God to make things different for Audrena. We wanted a miracle. Then I doubted God. And then we went to church. It was ultimately through church that we were introduced to another family traveling the same path. Their little boy is the one who will have surgery next week. I am praying for strength for them next week. And today I am thankful for God, who does have plan for us, even if it's not the plan we had in mind. I am also convinced that my mom has been Audrena's guardian angel throughout this journey, and for that I am also thankful.

We recently heard about yet another family who may be traveling on a hearing journey of their own. To them, I would say that it will be hard, but it will be ok. You will get through it, but don't be afraid to ask for help from family and friends. They may not always understand, but they will be there for you. And seek out a mentor family because they will understand, and they will be able to show you proof that things will be ok. That brings me to my next reflection. I am firmly convinced that we could not have made it to where we are today without the support of such wonderful family and friends. Some of those friends have come through Facebook, or blogs, or e-mail, and they have been wonderful mentors to us. They have shared their stories, and they gave us hope when we needed it most. We have seen their children succeed with their implants. Audrena would have been just fine with sign language and no implants, but we wanted her to have the chance to hear us say, "I love you." We wanted certain things for her, and we needed to see that it was possible because at the time we couldn't see far enough into the future to today, when she can hear us say, "I love you," and just about everything else we say to her. I could not have made it to the good place I am in today if it were not for these people, whom we are happy to call our friends. So today I am thankful for Lori, Susan, Karissa, Deb, Anne, Keith, their families, and anyone I have inadvertently omitted. We hope to someday have the opportunity to provide that kind of support to another family because it's a rocky path to travel, and it helps to have someone there to remind you that there will be a pot of gold at the end. It will all be worthwhile, and everything will be ok.

This morning, we met with our team to review Audrena's IFSP. At our first IFSP meeting, we had no idea what to expect, so we were just kind of along for the ride. This morning, we were still along for the ride, but we felt experienced enough to give some input as needed. It was very reassuring and exciting to look around the room and see the wealth of knowledge, to see so many talented professionals who genuinely want to help Audrena succeed. A few months ago, to say that we felt overwhelmed by the number of therapy sessions, and by the number of people involved, would be an understatement. Now that we are in the thick of it, we realize that it's hard work, but we're seeing rewards. We're seeing wonderful progress. We have a team of people who are working together better than we had imagined. And we have confidence. I looked around that room this morning and felt like the pieces have all just fallen into place. Audrena will achieve the successes we had hoped for because she has the right team helping her along the way. I am thankful for every single person in that room today.

When I was a little girl, I always said I wanted three children someday. I never imagined that any of those three children would be anything other than "normal," happy, active individuals. God has a different definition of "normal." He gave us a challenge. But he also gave us a blessing, many of them in fact. Seven months ago, I didn't want a deaf child. I wanted a "normal" child. I didn't want cochlear implants. I wanted Audrena to have normal hearing. Today, we have a new "normal." We have three normal, happy, active children. I have everything I have ever wanted, and more. Today, I am thankful for a loving, wonderful husband, Randy, and our three beautiful, perfect children, Reyana, Kelton, and Audrena.

Because I am the "writer" in our family, I do most of the blogging. Randy often tells me that I write a lot about what I am feeling, and not so much about him. Well, that's because I am blogging from my point of view. I do try to include him the "we" phrases because he does feel the things I am feeling much of the time. I think I can safely say that in this post, he feels what I feel. He thinks what I think. And he is thankful for what I am thankful for. I love him, and I love that we are a team.

October 9, 2012

Body-Worn Processor Tank/Cami Tutorial

I will preface this post by saying that I am a relatively amateur seamstress. And my sewing machine hates stretchy fabric. And it was 2:00 am when I took these photos, so they are awful. Beyond that, I think the directions are relatively simple for this tank top. It holds the Neptune processors very nicely, and the cords stay in place with just enough ability to move, allowing the headpiece to stay on better.

Click on the pictures for a larger version with instructions. If you have any questions, feel free to ask! It was late, I was tired, and it's not my best work, but it's just an undershirt, right?

 








 

The original cami top that we received as a gift from another family had a velcro enclosure on the middle pocket area to hold extra cord. You could put velcro on the other pockets as well if you wanted to use the Neptune without the clip. However, most of the time we just clip Audrena's Neptune into the pocket, and it works well.

The side pockets are pretty necessary because they position the processor so that we can do diaper changes and car seats without the processor digging into Audrena's back. It makes everything a little more comfortable!

We have some cami tops with the spaghetti straps and some tank tops like you see here. It doesn't seem to make a difference, so it just boils down to preference.

I'm taking my tired eyes to bed now. Happy sewing!

October 7, 2012

Jeslyn's Story

We are fortunate to have gotten to know an amazing family thanks to a mutual friend. Two of their four girls have cochlear implants. The youngest, Jesyln, is a little older than Audrena and has been featured in the hospital's magazine. She is making wonderful progress! Check out her magazine article.

http://ololchildrens.org/workfiles/WeeBeFALL_2012.pdf

October 4, 2012

Eight Weeks Post-Activation

Yesterday marked eight weeks of hearing for Audrena.

We took the kids to the annual fire station open house. Audrena was just fascinated with the fire trucks. As we looked at them, I talked to her about everything--the wheels, the doors, the siren ("oooo"), etc. She watched as the fireman put the ladder "dooooown, dooooown, dooooown" at the end of the night and listened to the beeping of the backup alarms on the trucks. But that's not the exciting part. As we talked to different people throughout the evening, she began to say, "Hiiiiiii." Then, as we watched kids climb a ladder, she said, "Up!" We were so excited with two new words in one night, and on her eight week hearing anniversary!

Recently, we've also heard her say, "Yeah." She has been trilling her lips for the elephant noise, saying "oof" for the "woof" of the dog, and making a higher pitched "ooo" for the "ch ch ch ch chooo chooo" of the train. It's so wonderful to see the progress every day!

Here is a timeline of what Audrena has accomplished in just 8 short weeks.

9 days    "Mmm" while eating.
    "Boo" while playing Peek-A-Boo.
12 days    "Shhh" while pretending the baby doll is sleeping.
13 days    Pointed at restaurant speakers & danced to the music.
     Turned to point at the door when Dr. Lusk said, "Bye bye."
3 weeks    "Aahhh" while flying an airplane toy.
4 weeks    "Ooh" for a firetruck siren.
    "Moo" for a cow.
    "Baa" for a sheep.
    "Uh-oh" when she dropped a paper and then looked down at it.
    Attempted to say "bubbles" while blowing bubbles with Mommy. It was not clear, but we could tell it was what she tried to say.
    Follows the command, "Turn the light on," or "Turn the light off" without visual cues.
5 weeks    Attempted to say "off" while playing the light switch game. It came out "fff."
    "Woo hoo" while riding an ATV with Daddy. Repeated after Daddy said it a few times.
    Turned to look at the proper person when asked, "Where's Papa" and "Where's Daddy?"
    "Rawr" while playing with a tiger toy.
    SLP observed Audrena mimicking many of her mouth motions as she talked.
6 weeks    "More" once for parents and at least twice for SLP.
    Responded to name on the first try 3 out of 5 times.
    SLP observed that Audrena displays recognition of all ling sounds except "ssss."
7 weeks    Audrena responds to "ssss."
    Audrena nearly always picks the correct toy out of two when she hears the sound (i.e. Audrena chooses between a dog or a duck when we say "quack quack.").
    Tries to say "Ana" for her older sister, Reyana's, nickname.
    "Putt putt" for tractor.
    Heard the microwave timer beep from the living room and looked around the corner for it.
    Says "more" and "uh-oh" often at daycare, sometimes at home.
8 weeks    "Hi"
    "Up" while watching kids climb a ladder at the fire station open house.
    "Yeah"
    Attempted "woof" for a dog. It came out "oof."
    Trills lips for an elephant.
    Attempted "choo" for "ch ch ch ch choo choo" with the train toy. It was a higher pitched "ooo ooo."

September 18, 2012

More!

Last night, Randy took Reyana and Kelton on a little ride to the convenience store for a treat. He brought back candy bars. I gave Audrena a bite of mine, and then she walked over to Randy to try a bite of his. After the first bite, she looked up at him and said very clearly, "More." She only said it once, but it was crystal clear. I can't wait until she is saying words regularly!

This morning in speech, she turned to her name on the first try 3 out of 5 times. She is doing well with the ling sounds except "sssss." We can't tell if she's just not hearing it, or if she's not reacting to it. We'll bring this up at Thursday's USD speech session to see what our Audiologist thinks. Our new Speech-Language Pathologist, K. is absolutely wonderful with Audrena, and we're seeing more and more progress. K. has also said she plans to come to next Thursday's session at USD so she can coordinate with our professionals there. She also has worked with J., our Speech-Language Pathologist at Boys Town, in the past, and J. remembered her when I e-mailed her about the change in therapists. It's so wonderful to see such a willingness to work together! We feel like we have a fantastic team, and Audrena will just thrive with that kind of cooperation. Every day I am amazed that Boys Town is over 2 hours away from here, yet everyone here seems to know everyone there in some manner!

Edited to Add: After I wrote this blog post, Randy informed me that Audrena said "more" a couple times during speech as well. Yay! Way to go, Audrena!

September 17, 2012

Switching therapy up a bit.

Awhile ago, I mentioned that we were going to be changing Speech-Language Pathologists through Birth to 3. It's difficult in a rural area to find experience with cochlear implants, but the SD School for the Deaf outreach team was able to suggest someone who would travel twice a week to see Audrena. Our previous SLP is probably very good, but she just didn't have the experience for us to draw from. It was apparent at the first session that the new one does, and she came highly recommended for her previous work with cochlear implant children. Audrena warmed right up to her, and we are seeing good things in the sessions. Plus, we are getting new ideas for "games" to play at home that will help Audrena learn to listen and develop her speech and language.

Our SD School for the Deaf consultant came down to see us last week as well. Audrena was a bit of a show-off! We played with a tiger toy for a bit, and suddenly Audrena exclaimed, "Rawr!" That was another first for her. She also walked and said "aahhh" immediately when I got out the airplane. Probably the funniest part was when K. was talking to her, and Audrena just rolled her eyes. We do have a sassy girl! K. was able to give us some information packets as well. We're always excited for new ideas!

Audrena met her physical therapy goals last week. We've also asked our SLP and our SDSD consultant to review the speech goals. We think it's time for an IFSP meeting to revise some things!

Fun at the zoo!

Saturday we took the kids to the zoo. It was so much fun for the big kids and a great listening experience for Audrena! We listened to the gong and practiced pointing to our ear when we heard it. We growled at the bears, rawred at the tigers, baaed at the sheep, mehed at the goats, sssssed at the snakes, and discussed what each animal was and what it was doing. Grandma and Grandpa quacked at the ducks with Audrena and showed her the turtles, which she got so excited about!

I think the best part of the trip was when we watched the two cows in the petting zoo. They were very vocal. Audrena just watched intently as they mooed, and as I mooed back at them. She studied them up close, but she wouldn't touch them. Then as we left, they continued to moo, and she mooed back at them as if to say, "bye bye." It was so cute!

September 13, 2012

Speech Banana Revisited

Here is a link to my original post about the audiogram and the speech banana. These are two very important things to Audrena's hearing journey. Today, I can say that Audrena cooperated beautifully in the sound booth at USD's Speech & Hearing Center, and we got a great audiogram!

Audrena tested at 20-30 decibels across the frequencies! We have been told that a cochlear implant patient will never achieve normal hearing, and typically they will be in the 30-40 decibel range. Now, I do know several who hear at 15-25 decibels with their implants, so it's entirely possible. However, we are thrilled with today's results! Thrilled! Audrena has achieved the speech banana levels! This means wonderful things for her speech and language development.

Through all the ups and downs of this journey, one thing has remained constant. The doctors, Audiologists, and other professionals at Boys Town National Research Hospital, and the doctors and clinical grad students at USD Scottish Rite Speech, Language, and Hearing Clinic have been top notch. Even if Audrena had not achieved such great results, we would still be able to say that with confidence. They have been nothing short of fabulous, and we would recommend them to anyone! But because they have changed our baby's life and opened up a world of opportunity for her, we will forever be grateful to them and to Advanced Bionics. If I sound like I'm delivering a sales pitch, well maybe I am. Just a little. Audrena is a success story in our eyes, and they have changed her life, so they deserve some public recognition.

Audrena is walking!

Audrena's physical therapist has been saying for awhile now that she has all the pieces of the puzzle to be walking, but she lacks the confidence to do it. Well, last night she found the confidence! She went from walking about 4-5 steps at a time to walking all the way across the room by herself!

We were told that kids with vestibular issues usually walk later, but typically by 2 years. Audrena was 18 months and 2 days old yesterday, so she's just on the outside of the normal range. I've been told by a friend who is an occupational therapist that they are not considered delayed until 18 months. Way to go, Audrena!

Notice in the video her CI fell off, and she dragged it across the room. I was not about to stop her to put it back on! Instead, I backed up and pulled Reyana with me so that Audrena would keep walking.

Reyana was so proud of Audrena, and she was so excited that Audrena wanted to walk to her! What a neat moment between sisters!


September 11, 2012

Advanced Bionics wins award for Neptune

Congratulations, Advanced Bionics! The completely waterproof Neptune was a huge reason we chose Advanced Bionics, as well as their programming and customer service. We felt it was the best fit for Audrena and our family, although the other CI manufacturers give great results as well.

http://scvnews.com/?p=34633

"Valencia-based Advanced Bionics, the global leader in cochlear implant technology and a subsidiary of the Sonova Group, announced Monday that Neptune – the world’s first and only swimmable sound processor – has earned a prestigious product design award from the German-based Red Dot Institute for Advanced Design Studies. Neptune, one of 4,515 products submitted by manufacturers from around the globe for this renowned product competition, was awarded a coveted 'Red Dot Award: Product Design 2012' at a July gala in Essen, Germany, after undergoing an extensive evaluation process from a 30-member jury composed of product design experts."

"This design seal of approval from Red Dot represents the third award garnered by Neptune so far this year–a considerable achievement given the waterproof sound processor was introduced a few short months ago in the first part of 2012. Earlier this year, the Industrial Designers Society of America Northwest honored Neptune with a Silver Shaggie award in recognition of excellence in product design. Neptune was also recognized as a Finalist at the 2012 Medical Design Excellence Awards competition held in Philadelphia in late May."

September 10, 2012

Just when we started to doubt...

We have been worried about Audrena's progress since the last sound booth testing. At home we have seen progress, but we so badly wanted a good audiogram to see where she is, and what we got was not ideal. So this week, we will take Audrena to USD for some booth testing in the morning, which will hopefully be a better result for us since our last booth work took place during nap time.

But yesterday, just for the day, we were able to put our worries aside. We spent the afternoon and part of the evening at Grandma & Grandpa's house with family. Audrena, Randy, and I played her new favorite game, turning the light switch on and off. Each time, we would say, "The light is on," or, "The light is off." We were impressed when Audrena would say, "fff," after we said, "The light is off." We are certain she was trying to say "off." She did that several times. Later, we played with this toy, which is one of her favorites. There is a light switch on the side that turns on/off a light in the window. I said, "Audrena, turn the light on." She had her back to me when I said it, and she turned the light on!

Later on, Daddy took the kids for a slow ride on the John Deere Gator. He held Audrena on his lap, and as they went over bumps or down an incline, he would say, "Woo hoo!" Audrena repeated "woo hoo" a few times. Then, after he brought the kids back into the house, Grandma said to her, "Where's Papa?" Audrena turned to point at Grandpa. We followed it up with, "Where's Daddy?" She turned to point at Randy. She also did this more than once when asked.

So while we are still a little concerned about last week's sound booth testing not being at the levels we had hoped for, we are optimistic that we just have one stubborn little girl. Hopefully she will do a wonderful job this week at USD so that they can get a good audiogram, and we can put our worries to rest for good.

An absolutely ingenious invention!

Since sometime around April, we (ok, I, but I share with Randy) have been corresponding with a family from Lincoln, NE, both through e-mail and Facebook. They have a daughter who just entered kindergarten way ahead of the game. She received bilateral cochlear implants from the same doctor who did Audrena's surgeries. Lily's grandmothers came up with an absolutely ingenious idea for a tank top that holds the Advanced Bionics Neptune processors very nicely! We are very thankful to Lily's mom and grandma (who sews them by hand!) for sending one to Audrena. I have since purchased some tank tops and am in the process of making some for Audrena, using the other tank top and her detailed instructions as a guide.

Here is a link to their original blog post about the tank tops. I cannot praise them enough. Before the tank top, we were constantly putting the headpiece back on Audrena's head because the little cord clips would catch just enough to pull the headpiece off when Audrena would move a certain way. We always struggled with where to clip the processor on her clothing, and we could already predict that it would become a problem during potty training. The AB harness is pretty bulky, so although it was a decent solution for certain outfits, it was not our preferred method for "wearing" the processor. This tank top solves everything. Daycare has even noticed that the headpiece doesn't fall off as often. The cord tabs (our tank has 2) in the back allow the cord to slide as needed while still keeping it in place. The processor fits nicely into the pocket, and it sits at her side, so diaper changes and the car seat are no problem. So for this wonderful invention, I send out a public THANK YOU to Lily's family for the tank top and for the instructions so that I can make more.

To everyone else, I completely recommend reading Lily's blog, which is full of great information about cochlear implants, and it's a wonderful testament to what cochlear implants can do for a person. This blog is what has lifted our spirits during tough times. We could see the possibilities for Audrena by reading about Lily's progress. She is truly an amazing child, and we pray that Audrena can have the same kind of results from her CIs, with some hard work of course. Her parents are an inspiration, and her mom has been a great mentor for us.

http://ardinger.typepad.com/

September 8, 2012

It must be because she's a redhead.

We went to get Audrena's steri strips off Wednesday morning. Dr. L. also removed some of the packing material from her left ear so that we can have an earmold made for the hearing aid that we'll use until she can have the implant. He wanted to leave as much as possible so that the fat grafts he used to patch the tube holes can heal. We will go back in a month to have the packing completely removed from both ears. Let's just say that Audrena was not happy with Dr. L. by the time the appointment was over. In fact, as we held her down for him to remove the packing, she turned all sorts of blue and purple! He commented that her feisty attitude comes from her red hair, and looked pointedly at me (for those who have not seen pictures, I have red hair). His nurse had said the same thing to me earlier, pointing out that those redheaded qualities would serve Audrena well in life.

Then we went to a programming appointment with J. It was Audrena's nap time, and she was pretty much uncooperative for most of the appointment. J. didn't tell me exactly at what levels Audrena is hearing, but she did say the responses they got in the booth were at louder levels than they had hoped for. However, based on what we have told her about the sounds Audrena is making at home, she did not adjust the program. At some point during the appointment, we heard that Audrena's stubbornness must come from her red hair. I see a theme!

From there, we went to a speech session. Audrena did a good job during that session, making sounds like "mmm," "oooo," and "aaahhhh." I have not put anything on the blog about our speech sessions here at home until now. For some time, we debated about asking for a new Speech Language Pathologist because, while the one we had was good, she has not worked much with cochlear implants. We wanted someone with lots of experience, and we think our SD School for the Deaf outreach consultant has found us one. Our Boys Town SLP agreed with our decision and was happy to see that we were seeking out experience. So to the new cochlear implant parents out there, I encourage you to do everything in your power to find experienced people to work with your child. It's so important because they will know exactly what your child needs, and they will be able to give you lots of ideas for things to do at home. That's what we need at this point in our journey.

So, here is a quick recap of the progress we have seen and the sounds Audrena makes.

"aaahhh" for airplane
"ooooo" for fire truck
"mmm" when she eats
"moo" for cow
"baa" for sheep (once at this point)
"boo" when playing peek-a-boo
"uh oh" when she dropped an item (once at this point)
attempted to say "bubbles" while we blew bubbles, although it was not clear
Responds to "turn the light on," or "turn the light off" when told. The light switches are a fun cause/effect game that Audrena loves to play.
Understands "bye bye" without being waved at.

And now, I have to give a "way to go" to Advanced Bionics customer service! We had noticed that Audrena's headpiece periodically did not sound right during our daily checks. After several attempts at trying to figure out if it was the headpiece, the cord, or the earbuds we use to listen to it, we called AB. They immediately said they would send us a new headpiece and cord. (For now we are using the backups.) Granted, they are under warranty, but I had heard in the past that AB has fantastic customer service and overnight shipping of replacement parts. This was our first experience, and we're impressed. As for the headpiece, I'm sure it's because Audrena is always putting it in her mouth, but at this point I'm not sure what to do about that. She puts everything in her mouth just like Kelton did at this age. I guess we'll just continue to be vigilant about watching her and about putting it in the dryer every night.

August 30, 2012

Boys Town Activates its 500th Implant!

What an exciting milestone! Boys Town activated its 500th cochlear implant this week. Congratulations, BTNRH!

http://www.omaha.com/article/20120829/LIVEWELL01/120829652/0

Audrena stands up by herself!

Audrena has certainly not let surgery slow her down! She has been doing all sorts of exciting things for Aunt Kelli while she's here. Today Daddy, Kelli, and Audrena were playing with our bag of "learning to listen" toys. Audrena repeated the "aaaaahhhh" for the airplane. She did this twice. She also said "boo" clearly a few times today. Those things are accomplishments in themselves, but the next one is really exciting. We will let you watch for yourself.


August 28, 2012

Cholesteatoma Complications

Today we checked into Boys Town with an optimistic attitude, just certain that this would be the last of Audrena's surgeries. We went through all of the pre-surgery business and handed Audrena off to the Anesthesiologist without such a nervous pit in our stomachs as we had last time. Audrena would receive her left side cochlear implant, and all would be well.

We received a visit from the surgical nurse shortly after surgery started. Everything was going fine, but Dr. L. had to cut a tiny section of hair, so she returned it to us in a ziplock bag.

About an hour later, we received a phone call from her stating that things were taking longer than normal due to Audrena's anatomy, which we expected. She would call in an hour with another update.

Soon after, Dr. L. came into the room and said, "We have been thrown a curve ball." He found a cholesteatoma behind Audrena's ear drum. This is basically a growth of skin that should not be there. If left to grow, it can cause hearing loss and other issues in a person with normal hearing. In Audrena's case, both he and Dr. K. agreed that it would be careless to continue with the implantation today. Doing so could push some of that skin tissue into the cochlea, and there would be no way to clean it out without destroying the possibility for an implant. Instead, they agreed to clean out the cholesteatoma and wait 6 months.

After 6 months has passed, he will do another CT scan to make sure it has not grown back. If things look good, then he will finish the cochlear implant surgery. He apologized for such disheartening news, but he explained that this is pretty rare. He has never had it happen in well over 700 surgeries. Leave it to our daughter to be that one case.

There was some talk about whether this might be congenital, but he concluded that the cholesteatoma was caused by the tube she had in her ear. He removed the tube and placed a fat graft and re-grafted the right ear since it had not taken.

After the surgery, Dr. L. came in again to report that Audrena was awake in the recovery room and with no facial nerve damage (always the main concern for Daddy, as he loves that precious smile). He again apologized and said this was something he could not have predicted, and in the grand scheme of things it will be a small bump in the road. We told him we are just happy that he is so cautious. It's always better to be safe than sorry.

As for the recovery, Audrena came out of the anesthesia much better this time, and they gave her an extra dose of Zofran, so she didn't get sick. She slept a lot, drank a couple cups of apple juice, and devoured a serving-and-a-half of meatloaf. They removed the IV and released us. We had a hotel room already, so Audrena had even more comfortable sleep. After a couple hours, she woke up dancing and smiling at her cousin, Brady, who came to see her.

It breaks our hearts to think about putting Audrena through another surgery. We had high hopes that this would be the last of them until she was into adulthood. Six months seems like such a long time! However, in keeping a positive attitude, we are thankful that Dr. L. found the cholesteatoma when he did. If left to grow, it could cause facial nerve damage, and we could lose that beautiful smile. We are also thankful that Dr. L. chose to implant the right ear first. We could otherwise have faced this setback before she ever had a CI, putting her speech and language behind even more. As it is, she does still have one implant, and her speech and language will continue to develop. So we are not being set back in that respect.

We will get the cute zebra print hearing aid back from USD, and she will get a new earmold to go with it. She will wear that to continue auditory nerve stimulation until Dr. L. is able to finish the implant. He did make a reference to retirement today, and I was quick to ask, "You're not planning to retire any time soon, are you?!?" He smiled and said something like, "Not before I get her implanted!" Just remember that promise, Dr. L! We have faith in Dr. K., but we love you!

August 22, 2012

More Progress, Programming, and a Pre-Op Visit

My birthday was Monday. I got some of the best birthday presents a mommy could ask for. Reyana picked out Tinkerbell cupcakes for me, and she and Kelton sang "Happy Birthday," followed by huge hugs and kisses. Then that evening, I was playing with Audrena, working on the "ssshhhh" sound. I rocked her baby doll in my arms and said, "Ssshhhh. Baby is sleeping." After several times, Audrena took the baby from me, rocked it in her arms, and said very clearly, "Ssshhhh." It only happened once, but it was so clear. I was over the moon excited! What a great birthday present!

Yesterday we went for a programming session. As we waited in the lobby, they were having a preschool open house. We watched, as children with hearing aids and cochlear implants came in for their first day of school. It was interesting to see the CI parents looking at each CI child to see how that child was wearing his/her processor. It's sometimes a challenge to figure out where to clip Audrena's processor, although we love the waterproof Neptune and that she doesn't have to always have a processor on her ear. Someday we figure we will get her a behind-the-ear model so she has that option, but for now we joined those parents looking for ideas, especially as potty training is around the corner for us. We definitely wouldn't want a processor falling in the toilet!

Our Audiologist, J., asked what kinds of things we have noticed in the past two weeks. I warned her that she would think I was lying to her, but it was all true. Then I talked about Audrena beginning to turn when her name is called, saying "mmmm," saying "ssshhhh," playing Peek-A-Boo, and attempting to say "boo." She was happy to hear it all, and she did say that it's early for those things, particularly the "ssshhhh," which is not even age-appropriate for her to be doing yet. We were obviously excited to hear that, although we know we have lots of hard work ahead, and we'll have some slow times with Audrena's progress.

Audrena did not cooperate well in the booth, or for any reflex testing. She is, as J. said, "a hard nut to crack." So they adjusted her programs a bit and gave us two more to try, each one just slightly louder than the previous, but not by much, as Audrena is already hearing soft sounds like "ssshhhh."

We went to lunch in between the programming appointment and seeing Dr. L. There were speakers above each table, although the music was not very loud. The restaurant was pretty empty, so we did not have much noise to contend with. Throughout the meal, Audrena repeatedly pointed at her ear, then at the speakers, and she would often dance, or bounce to the beat of the music.

Here is a short video clip from my cell phone. I was a second too late to catch her really pointing at her ear, but that's what the video starts with. She then points up at the speakers, takes a bite of food, and dances/bounces to the music a bit.



After lunch, we walked the mall a bit and then headed to the Pre-Op appointment. As we waited in the lobby, a little boy asked very politely what Audrena was wearing on her head. Randy explained that her ear doesn't work, so this helps her hear. The little boy then turned to his mom and said, "Mom, you should get me one of those!" Randy laughed, picturing our own Kelton saying something like that since we are always telling him, "Listen to me!"

Dr. L. checked Audrena over, discussed the surgery, and answered any questions we had. One question was, how would she wear her other processor with the neoprene bandage over her head for 3 days? He said we should be able to adjust the magnet strength accordingly. Yay! I didn't want her to go 3 days without access to sound. By the end of the appointment, Audrena was plenty mad at Dr. L. for messing with her ears. He said he would see us Tuesday, patted me on the back, and said "bye bye" to Audrena. She looked at him like, "Yeah, that's right. I'm getting out of here." Then she turned and pointed at the door. He smiled and said, "You understood that didn't you!" She grinned back, as if to say, "Yes, I did!" Another small miracle.

August 18, 2012

10 Days Post-Activation

It's been 10 days since Audrena's first cochlear implant was turned on. We are still on a pretty preliminary set of programs, and we've already seen lots of improvement. The first night, Audrena reacted to clapping, toilet flushing, and semi trucks driving by on the highway. Since then, things have continued to get better!

We have been working on the learning to listen sounds, but we've also been just having fun. One reason that, as parents, Randy and I feel Audrena's hearing loss was progressive is that she used to say "boo" when we played Peek-A-Boo. That gradually stopped. So one of the things we have been doing for fun is playing Peek-A-Boo. Audrena hides behind the bathroom door and we say, "Peek!" She then opens the door, and we say, "Boo!" After awhile, she always loses interest, and we hear her opening the cabinets in the bathroom. So then we say something like, "Audrena, where is the BOO?" She almost always opens the door then. We also feel like she has tried to say "boo" a few times as well. I caught it once and thought it was a coincidence, but then Randy mentioned it to me the next day after he played with her. So we feel like it's a possibility. We know it's really early for her to be doing any of this, but she did say it before, so maybe she is starting to remember.

Also, Audrena has always said "mamamama," and that was her universal name for both me and Randy. We have noticed that she is saying "mama" more often and discriminating so that she says it more when she wants me.

Because Audrena can do the "m" sound in "mama," I have been really working on "mmmmm" when she eats. Yesterday, she was eating in her high chair, and I was sitting next to her at the table. As usual, when she would take a bite I would say, "Mmmmm. Yummy food!" She said "mmmmm" a few times. I thought she couldn't possibly be saying it that quickly. After all, this is the time where she is supposed to be figuring out what she is hearing, and her receptive language is supposed to be developing. So I called for Randy to come over and watch. Sure enough, after I said "mmmmm," she followed with her own "mmmmm." Then Randy tried it. She did it for him a few times as well.

We know that Audrena is not hearing at all levels yet with just the first few programs, but we're absolutely thrilled to see her doing these things in just 10 days! It doesn't seem possible. We certainly didn't expect it for some time yet. Hopefully it's a good sign of things to come.

We have Audrena's next programming appointment and a pre-op appointment coming up this week, then surgery again on the 28th. This time we are nervous, but we have been through it once, so we at least know what to expect. It's still not easy to hand our baby off to the surgical team. But we have seen what potential she has with the cochlear implant, so there is a bright light at the end of the tunnel!

August 15, 2012

We've had our first scare.

Monday was Audrena's first day back at daycare. About mid-morning, I got a call from daycare asking if we might have a headband or something to help them keep the headpiece on. Remember that we are waiting for a magnet, so in the meantime I have it configured so that it's too weak rather than too strong. I ran to Wal-Mart and picked up a set of cloth headbands and dropped them off. The one I put on her fit nicely, not too tight, and it worked well for them.

Randy went to daycare in the afternoon for an in-service with our SD School for the Deaf worker. All was well, and the training went well. That was at 2:30.

At about 5:10, I arrived to pick up the kids. Audrena was fussy, and I attributed it to an overwhelmingly stimulating day. When we got home, I was calming her down, and I ran my hand over her forehead and cheek. She felt warm. I took her temperature, and the thermometer read 100.4. We were 2 weeks out from the first surgery and 2 weeks until the next surgery. I struggled with wanting to panic. This could be infection.

Immediately, I let Randy know. He was able to stop home for his supper break. Right away, he noticed that her implant site seemed swollen. The internal implant just looked like it was sticking out more than it had been. I had heard about instances where the implant site gets really infected and had to be removed until it's clear of infection. My mind went to the worst place, and I was so sick about it that I just wanted to throw up.

I called the after hours line for Boys Town, and a nurse called me back. He said it was probably fine to wait until morning since it was a low fever, and I should call the doctor's office then. I gave Audrena a dose of Tylenol, and she was so exhausted that she quickly fell asleep. All evening, I kept checking her temperature and feeling the implant site while she slept. After Reyana and Kelton were asleep, I brought Audrena into my bed so I could keep close watch over her. All night long, I kept waking to check her temperature. I would let the Tylenol wear off awhile to see what the fever was doing. It climbed very slowly.

Right away the next morning I called Boys Town. I was able to forward a photo of the implant site to Dr. L.'s nurse. She consulted with him, and he suggested that we see our family doctor. His nurse called our family doctor's office and instructed them on what they should look for. Randy took Audrena to see Dr. A. She checked Audrena over well and did a CBC to check her levels. That came back just fine, and she said there was no indication of infection around the incision, in the ears, or at the implant site. But she did have a swollen lymph node on the left side, and those counts were slightly elevated on the CBC. She called Dr. L.'s nurse back to consult with her.

They think Audrena had a bit of a virus. Also, the nurse said sometimes after activation the soft tissue swells a bit. We also wonder if the headband might have irritated the tissue at the implant site a bit as well. The fever has gone away, and Audrena is back to normal. What a scare! I was so worried!

August 11, 2012

Oh those magnets!

I already had to call on some more experienced parents for help with Audrena's CI. That didn't take long! We suspected that Audrena's headpiece magnet was too strong. It was creating a pink circle on her skin, and we were afraid of skin breakdown, which can be very bad. We were not sure if it was just her super-sensitive fair skin, or if it really was a magnet issue. I received some good suggestions, so we are giving one a try, and I think it is helping.

Inside of the Neptune headpiece, there is a magnet (or two in the water mic) and a foam spacer. There is a magnet in the internal implant component. The headpiece magnet attaches itself to the magnet inside of Audrena's head, so there is not actually anything showing through her skin. If she was not wearing the external components, there would be no indication that she has a cochlear implant. I'm including a picture below to show what I'm talking about. The magnet typically goes into the hole in the grey piece first (so it's closest to the skin), then the spacer, and the white cap fits over top.

Grey water mic, two magnets with foam spacer sitting between, and white cap.

The suggestion we are trying is to put the spacer in first, then the magnet. It is a little weak that way, but it will get us through the weekend. Monday we will contact our Audiologist for a weaker strength magnet, or see if she has any other tricks for us to try.

Another suggestion we received would be to loosen the screw a bit. The Neptune does not have a screw. However, I think the Cochlear brand implants do.

Some of my blogs may be pretty mundane or technical details that most people would not be interested in reading, but I hope they will help a new CI parent (such as myself) someday.

August 10, 2012

The Big Activation was a Success!

Wednesday morning found us in Omaha again. Audrena had an x-ray, and then we saw Dr. L. He showed us the x-ray and showed us the marking electrode, which he would have liked to get 1 millimeter further in, but he said it was a full insertion. We held Audrena down while he removed the stitches, which were mostly dissolved already, and she was madder than a hornet! Then he looked at he packing in her ear. (He had removed her tube and patched it with a fat graft.) He preferred to leave that in awhile, so he will likely take it out during the left ear CI surgery. We discussed the activation appointment, and we asked him to take a quick look at her medical alert bracelet to see that it contained the right information. Then we were on our way.

After lunch we returned to the Lied Center for the activation. The IT man did a few last minute things to prepare for the webcast, we chatted with the implant team manager, made a few phone calls to make sure our family had gotten into the webcast, and then it was time to start.

Our Audiologist explained a little about the process, that they would test each electrode for responses from the auditory nerve, and they would put beeps through the implant, watching carefully for cues from Audrena (i.e. blinking, or turning into my shoulder) to make sure it was not too loud. After all of that, they would turn on the mic so that she could hear sounds within the room. There was another Audiologist playing with Audrena to keep her attention and also to watch for those cues.

Here is a short clip of Audrena's first response to sound! She heard the beep and then turned to look at the Audiologist behind me. She responded that way throughout the programming. At that first head turn, we felt like we shouldn't believe it. Did we really see her turn to a sound? We couldn't believe our eyes. Then she started consistently stilling, turning her eyes back and forth to try to localize it, and then turning to look at the Audiologist. We did a pretty good job of keeping our emotions in check, but we fought the tears for sure! It was an overwhelming moment. I can't even describe the rush of emotion. From silence to sound with a series of beeps, and our daughter's life is forever changed. We knew in that moment, with every bit of our hearts, that we made the right decision.



After the programming was done for the day, the Audiologist gave us the rundown of how to care for the Advanced Bionics Neptune. She told us that there were 3 program levels that we should work through before the next morning. If any one of them seemed too loud for Audrena (i.e. if we noticed blinks or other reactions), we should back off and go back to the previous program. We took our suitcase full of equipment and went to the Listening Therapy appointment.

Our Speech-Language Pathologist went over things we should do at home, and she engaged in some play with Audrena, showing us how we can help Audrena to develop her speech and language. We did notice that Audrena seemed to hear her when she made the "aaaahhhh" noise for a toy airplane and the "ssshhhh" noise for a sleeping baby. Audrena also turned when the SLP accidentally slammed the toy cabinet door. In retrospect, we should have been participating a little more in this appointment, but by this time we were mentally exhausted and mostly just watched. I promise we soaked in the information, though!

After we were done, we went to check into our hotel. We quickly discovered that it's impossible to keep the headpiece on in the car seat. Since then, an experienced parent has suggested we get out our Hanna Andersson Aviator Cap for car rides. For the time being, we gave up on keeping the CI on in the car. My grandma was in the hospital, so we decided to take Audrena to see her. What better thing to lift the spirits than a visit from your great-grandbaby? The extra two hours in the car that day were completely worth it to see Grandma and Audrena together!

It was a long and exhausting day, but we did observe Audrena responding to sound. I went to bed emotionally and mentally drained. It was pretty taxing to observe Audrena hearing with her implant, then to see my grandma in the hospital, to replace the headpiece a million and ten times both in and out of the car, and then to have to try to remember what exactly we needed to do with the implant for the overnight. We had to unpack the "suitcase" of supplies and sort through it to find what we needed. It was a late night. Needless to say, we all slept very good!

The next morning, we were back with our Audiologists for more programming. They finished testing the electrodes and developed two additional programs for us to try. Audrena did pretty well for about an hour, and then she was just done. They did say that usually they see a big blossom from the children at either one or three months. We will be back in two weeks for another session. When we got to the car, Audrena fell asleep immediately! She was exhausted.

Since we have been home, we have seen Audrena protest heartily when her CI is removed, point at her ear when she hears a sound, and concentrate when she hears something. We didn't expect all of these things so soon after activation. After all, we are in the early stages of programming right now.

I would also like to take the opportunity to address something because other new CI parents are likely to run into the same situation at some point. We knew going into this that cochlear implants are very controversial. The Deaf community/culture (not sure I'm using the correct terms here) can be very anti-implant for various reasons. I understand that. I respect that completely. I experienced both support for, and resistance to, Audrena's implant today. I didn't expect it so soon, but I knew it would happen someday. Without getting into identities on a public blog, I will just say that I received some good words from a deaf person who does not have a CI, and I also had a deaf person tell me that we should have waited until Audrena is old enough to decide for herself. She also told me that if Audrena were in an accident, she could not be resuscitated with paddles because it would "blow her brains out." I know that is untrue and is an old wives' tale, so to speak, about cochlear implants. My husband and I both have just enough medical background to know what is or is not possible. People quickly came to my defense, and I appreciate that. Randy and I did not take this decision lightly. We weighed the risks. We asked the medical questions. We explored our options wholeheartedly. We even considered moving to Minnesota or St. Louis to be near an excellent school for the deaf. We considered what Audrena might or might not want later in life. We know that deaf people absolutely thrive with sign language, and they can do great things. In fact, we do plan to have Audrena learn sign language as she gets older because there is always the possibility that she will need it. Not being able to hear would not make or break Audrena, but we are confident that it will help her throughout life. If Audrena decides she does not want the implant later in life, then she can choose not to wear it, or she can choose to have it removed. In the meantime, we are committed to our decision, and we're happy with the results we have seen thus far in these early days.

We'll continue to keep you all updated as the next surgery date approaches!



August 4, 2012

Surgery Details and Beyond

What a week! To say that we are exhausted is an understatement. It all started Monday evening. We arrived in Omaha at 9:00 pm. I had booked our hotel stay through Expedia. When we arrived, the hotel told us that Expedia's payment method had been declined, so we could not check in. I called Expedia, and it said the wait time was 43 minutes. Talk about one unhappy mama! In the meantime, we gave the hotel our credit card so that we could check into a room. I waited an hour and 15 minutes, at which time Randy called a different Expedia phone number and got right through. After some effort, he got the problem resolved, and we could actually settle in for the night. I think we actually got to bed around 11:00.

At 5:30 am we were checking in at Boys Town. They took us to our room, and Audrena cried while the nurse listened to her lungs and checked her oxygen levels. I wanted to cry right there. It was all pretty overwhelming.

We took Audrena to play in the toy room, where the child life specialist came to talk to us, and the anesthesiologist came to introduce himself. 

Somehow the date was wrong on our camera. I'm going to have to fix that.


We talked to the anesthesiologist for a bit, and then we went back to our room to wait for Dr. L. He came in, confirmed that Audrena would receive an Advanced Bionics implant, checked her ears, and discussed things with us a little more. Once again, we talked about the risk to the facial nerve. This had always been a worry for Daddy, as he loves his baby girl's smile and double dimple. Dr. L. explained that in all the many hundreds of surgeries, he has never had an issue, and he assured us he would take it very slow. He marked Audrena's ear with an X and then left.

I'm a little foggy here, but at some point, the surgical nurse came in to introduce herself (not sure if it was before or after Dr. L.). She said she would give 2 updates--once when the incision was made, and once when they were done with surgery.

Soon the anesthesiologist and surgical nurse were back to take Audrena from us. He waited patiently as I gave her a long hug and a kiss, then passed her off to Daddy, who gave her hugs and kisses. It was so hard to hand her over, so we continued to pass her back and forth for a bit. After one last loooooong hug and a kiss, I finally handed her into the warm blanket he was holding. He assured me he would take good care of her, and they left.

I sat in the recliner and cried. Randy hugged me, and we cried together. The nurse came in and saw me. She made sure I had Kleenex. At some point, she had asked if we slept much the night before. I said, "No. Not really." She promptly brought in a fold-up bed, pillows, blankets, and then made sure we had something to eat and drink. I did take the blanket and close my eyes, although it would have been impossible to nap with my worries.

We got the first update at 7:55 am. The incision had been made. I cried again.

We expected to receive the next update 3 - 3 1/2 hours later. It came sooner than that. Our nurse came in with the message, "Implant is going in. She's doing great." I said, "The drilling is done?" She said, "Yes, it's all done." I breathed a sigh of relief, and Randy and I both cried and hugged each other tightly.

Dr. L's fantastic office nurse stopped in to see how we were doing. Talk about going above and beyond! As she was leaving, our nurse came in with another update. They were finished and closing her up. The message came at 10:55 am. Dr. L. was right on the money when he predicted a 3 - 3 1/2 hour surgery.

Then came the update that they were all done, and she was doing great.

Dr. L. came in to say that he got a full electrode insertion. However, as he thought, she had a "gusher" of spinal fluid when he drilled into her cochlea. He packed it tightly with tissue, and he said as a result, two of the electrodes tested with very high thresholds. He was unsure if they would be useable. We do know that they can program around that, so it's not a big deal. He explained that when he removed her ear tube, he used a fat graft, and Audrena's ear would be draining for a few days. Then he told Randy that the facial nerve never went off and was never exposed. There would be no damage. He grinned and gave Randy a little punch to the shoulder on the way out of the room. I saw pure relief on Randy's face.

Soon our audiologist came in to complete our processor and accessory order. We ordered two Neptune processors because, in a certain configuration, they are waterproof. Besides, we thought it would give Audrena the freedom of not having something on her ear all the time. In a few years, when we're hopefully eligible for an upgrade, we will reconsider getting her a behind-the-ear processor. We had tons of color choices and accessories to order. Audrena will make quite the fashion statement!

Awhile later, our nurse came in and asked if we were ready for Audrena. Who would hold her first? Did I have to use the restroom first? What did I need to be comfortable? It would be awhile before I would get up again. I think I was a little unprepared when they brought her to me. She looked so little and pathetic with her bandage and IV. I cried a little and just reminded myself that it would all be worth it.




It wasn't long, and I had the first (and only) inkling that she might be in some pain. The morphine was wearing off, but our nurse was quick with the Tylenol. When it was time to change the bandage, I was surprised at how much her ear was draining, but it was clearish red drainage, the normal kind after a surgery. I was also surprised at how clean and discreet the incision was. He had stitched it shut, and he did a neat job of it. Also, they did not shave any of her hair. That's good because her hair is thin, so she needs all the hair she can get!

Audrena slept for a long time that first day. She was, no doubt, exhausted from a late night, an early morning, and the anesthesia. Around 4:00 we finally got her to wake up enough to drink something. She then threw up all over me. I had extra clothes, but they were at the hotel. The nurses were quick to get me scrubs so that I wouldn't have to walk into the hotel covered in vomit. Audrena promptly went back to sleep.

We ordered Audrena a dinner tray, but when Randy sat her up to eat, her chin fell to her chest as she went right back to sleep. At some point, I laid down on the fold-up bed with Audrena, thinking we would both be more comfortable. Then our nephew, Brady, came to see her. Randy's cousins Brandie and Trenton came to see her at about the same time as well. She opened her eyes just a bit, saw Brady, closed her eyes, opened them to look at him, and when he got up to come closer, she gave us the first smile we had seen since before surgery! It brought tears to our eyes. She tried to sit up, so we moved to the recliner. Immediately, she was hungry, so Daddy fed her the meatloaf we had ordered earlier. She devoured it and was mad when it was gone. She drank some apple juice as well.

By that time, we had all (Dr. L., too) decided it would be best for us to stay overnight since she had not eaten or drank much until late. We were the only patients in the hospital by that point, as the rest of the surgeries were same day patients. They moved us to a room with a hospital bed instead of a crib.

Our night nurse changed Audrena's bandage, and we began to settle in for the night. Randy and Brady went back to the hotel, and I stayed with Audrena. Probably 15 minutes later, I moved her head off of my arm and onto the bed, accidentally pulling her bandage off. I rang for the nurse so she could help me put it back on, and I noticed that the gauze was soaked with blood, and there was a clot. She called Dr. L. to see if that was normal. He said not to worry, that it might do that. So she re-dressed it, and we went to sleep.

Surprisingly, Audrena and I slept well (with the normal wake-ups from the nurse checking on her), and the bandage just had the normal drainage again in the morning. Dr. L. came in after Randy arrived, and he released us. It's a good thing because Audrena had been trying to pull her IV out, and it was pretty tough to keep her happy in the play room with an IV pole in tow! She was ready to go home!



As we left the hospital, a lady we had never seen before stopped us to ask how the night had been and how Audrena was doing. We assume she must have been a nurse or someone in the operating room. We really don't know. What we do know is that every single person at Boys Town went out of their way to make us comfortable and to show they really cared about Audrena. The level of care she received was better than outstanding.

By the time we got home Wednesday afternoon, Audrena was nearly back to her normal self. By Thursday afternoon, if she had not had the bandage, you would never know she had surgery. She played and climbed like normal.

Friday, we noticed that her incision area was getting pink. I e-mailed Dr. L.'s nurse to make sure that was normal. Dr. L. didn't waste any time calling me back. He said she had received a long-acting IV antibiotic, and it was probably ok. However, to err on the side of extra caution, he did call in an antibiotic. By Friday, the ear drainage had pretty much stopped, just in time for the bandage to come off.

Today we are just continuing the ear drops and keeping an eye on the incision site. She has started to itch her head, and we have had to make sure she is not itching her stitches. We take that to mean she is healing. Audrena is keeping us on our toes, and all is well. We are waiting anxiously for Wednesday, when we go back for our follow-up appointment and the activation!

If you have made it this far, you're awesome. These have all been details I didn't want to forget, so it got pretty long. Now I'm going to share some thoughts about the process.

We kept our friends and family updated on Facebook and through text messages throughout the surgery. We could not have gotten through this without them. It comforted us to see so many people praying for Audrena and wishing her well. The words of encouragement meant more than anyone will ever know.

Will the next surgery be as mentally draining? Yes. We're still allowing someone to operate on our baby. But at least we know what to expect. And we know how quickly Audrena bounced back. I don't have to fear the pain for her because I know that it really is controlled with Tylenol. I watched her carefully for any signs of pain, and she only showed it that one time. We feel much better-equipped to handle things. We also know that Audrena will get the best level of care in the hospital.

We would make the same decision again. The opportunity to hear far outweighs the recovery time from the surgery.

An excellent surgeon is worth his (or her) weight in gold--and more. We will be eternally grateful to Dr. L. for giving Audrena the gift of hearing. And we will forever praise Boys Town and its staff for providing amazing care.

Another random thought--Audrena's medical alert bracelet arrived just in time. I had asked Dr. L. at her pre-op appointment what it should say, and he said it was important for it to say no MRI and no monopolar cautery. I was able to order one that is engraved on both sides so that it could include that she has cochlear implants, NO MRI & NO MONOPOLAR CAUTERY, Daddy's cell phone number, and the phone number for Boys Town for information. We know that not all cochlear implant recipients wear medical alert bracelets, but we felt like it was important for Audrena to wear one. It's just the right size for her ankle, and she doesn't mess with it when she wears it.

Well, that's all I have for now. On to activation! We will be sure to post video and photos of the big occasion.