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!
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.
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.!
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.*
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.
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!
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
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."
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."
Subscribe to:
Posts (Atom)