Wednesday, December 31, 2008
We brought Lucas home from the hospital a year ago today! After 8 helpless days in the NICU, we could finally be together as a family for the first time. The NICU experience is one that I hope to never have to go through again. Lucas's stay was short, but nonetheless difficult. It's tough when you have no control over your baby, and all you have is basically visitor privileges. New Year's Eve 2007 was a joyful day indeed!
You always hear people say that a baby changes things, and you think "yeah, yeah, yeah, I know." Well, you really don't know until you have that baby, how much things really change. Priorities change, feelings change, lifestyles change. I never really understood the feelings of love for a child before I had one. It's unique, strong, binding. It's like no other kind of love. Everything changed the moment I gave birth. Life became about all about him, and I wouldn't change it for the world.
When I was pregnant, I remember being anxious for the first ultrasound, because I knew that in addition to determining the gender of the baby (which we weren't successful in finding out the first time anyway), any red flags for the baby's health concerns would be raised. I remember asking the technician... "so my baby has 10 fingers and 10 toes?" Yes, she replied. I was relieved, as if that was an indication that my baby would be healthy. WRONG! I was so oblivious to the fact that anything could be wrong with my child, least of all his hearing! We did everything right - he was perfectly planned, I stayed away from everything that I thought could be potentially harmful to him... I didn't drink any diet soda (because of the aspartame), I wouldn't even pump my own gas because I was afraid of the fumes, I took all of my vitamins as prescribed, ate salmon at least once a week, had excellent prenatal care... very textbook. And 5 weeks early my water broke, and my baby was born with more than one health concern. Yeah, things definitely changed.
January was fun. I used to take a picture every day of Lucas to send to Nate at school. I think I took 180 pictures that month alone. But that month, we had 3 follow-up specialist appointments that caused a lot of anxiety.
February was a disaster. It was then that we were told that Lucas was deaf. It was then that I began to feel incredible amounts of guilt, wondering what I had done wrong. It was then that I could not fathom returning to work in April. I spent so much time crying. I don't think that Valentine's Day will ever be the same.
In March, Lucas (who had been completely healthy, other than his congenital issues up until that point), developed RSV and spent 5 days in the hospital. More guilt, lots more guilt. Early Intervention also came out to the house, and we established a great relationship with them and Lucas's therapists. I am so thankful for everything that EI has done! It has been a terrific experience. Lucas also got his first pair of hearing aids.
On April 4, I returned to work after 15 weeks. I was miserable. It was really, really, really tough on me (and still is to this day!). Again, pre-baby, I thought it would be no big deal. Boy was I wrong.
May is kind of blurry. I went to work, and returned home as quickly as possible to spend time with Lucas. I was counting down the days until June.
In June, I began 10 weeks of summer vacation and time with my baby again! Lucas spent another 5 days in the hospital, that should have easily been prevented, but we won't go there. He only had a summer virus, but the doctors had suspected meningitis, and it was better to be safe than sorry. I started this blog in June, and met so many incredible people through blog networks, that have taught me so much about hearing loss. I am forever grateful to my blog friends.
July was fun! We spent a lot of time at the pool! Nate was in grad school, so we didn't get to spend that much time with him, but life was pretty carefree for the first time in 6 months. I think that I finally lost the guilt of Lucas's hearing loss being my fault. That was really important. Lucas had a sedated MRI in Lancaster, although it was for nothing. It had to be repeated at the end of August, because they didn't get the film they were supposed to have. Lesson learned - just go to CHOP, period.
In August we went to the beach in the Outer Banks of NC. I really enjoyed my week there, I still look back on it fondly. I think it was an escape from all the crap I had to deal with at home, even if I wasn't really away from it, it certainly felt like it. At the end of August, I returned to work again with the beginning of the new school year. I thought it would be easier than in April. Nope. We also began the CI candidacy process. Lucas had his second sedated MRI. The good news was... from a physiological standpoint, he was a candidate. It was music to my ears.
September came and went with one very exciting event... Lucas signed milk at 9 months and bridged the communication gap. It was my happiest moment of the year! (Don't forget he was actually born in 2007, so that doesn't count for the year.)
October came and went. November came and went. Those months were pretty uneventful - there wasn't a lot of extra time to do much. Working full time is rather time consuming. All extra time was devoted to Lucas, and to his therapies. We worked 6 hours a month with them. But without access to any sound at all, we were just kind of waiting. Thanksgiving was well spent with family and friends and a week of vacation.
December was an exciting month! I love Christmastime! We also had a birthday party, a first birthday, Christmas and CI surgery.
It was a crazy year indeed. It was the most exciting, joyful, and sorrowful year of my life, all at the same time. Life has changed for the better. We have the most beautiful little boy, who keeps us challenged and brings us incredible amounts of joy. Life will never be the same, but I wouldn't want it any other way. Could it have been worse? Absolutely. Could it have been better? At times, maybe.
I look ahead to 2009 with lots of hope and optimism. I look forward to 8 months away from my job to help my baby learn to listen with his CI. I hope that by this time next year, he will have a second CI, have seen some success with the first, and he will have said "Mommy". I look forward to the positive change that a new administration will bring to our country and a hopeful beginning to the end of the war in Iraq.
Wishing you and yours a happy New Year and a prosperous 2009!
Saturday, December 27, 2008
Surgery started around 8, Nate and I went to surgery waiting, then I pumped and went to Au Bon Pain for breakfast, and returned in time for our first update. It's sooooo nice - they have nurses who go around to the operaring rooms hourly to give parents updates. I guess she wasn't allowed into Lucas's OR though because of the highlly sterile nature of the implant. But she called in and everything was going fine.
Shortly thereafter, the CI program social worker came to chat with us. Then the CI audiologist brought us the stuffed Cochlear koala (with a toy CI) and news that the surgeon had gotten a full electrode insertion and the implant was working well from his perspective. It's nice that they always test the implant before finishing up. We also chose a silver processor with a beige coil for him.It will look like this, except that the very top round part will be beige, to blend in with his hair. Soon after the audi left, Lucas's surgeon came to tell us everything went well. About 15 minutes later, we got to go see him. He was sleeping and cranky, and I held him for about 2 hours while he slept on and off.
Lucas was discharged around noon and we were back in Lancaster by 2 or so. It was a pretty long night... Lucas and I slept on the couch together, because he wouldn't let me put him down. He also threw up twice from the anesthesia, surgery to the head, or a combination of both. We've kept him comfortable with pain medications and he has slept a lot in the past 24 hours. He's actually sleeping in my arms as I type right now. He really rallied today around noon, when my parents came to visit, playing on the floor. We got a little smile last night from Tickle Me Elmo, and a big smile later this morning when he saw one of our fluffy cats.
We took the bandage off around noon. Surprisingly, he hadn't tried to pull it off before then. The nurses seemed to think it would be off before we left the hospital yesterday. There are no sutures, but rather dermabond holding the incision closed, which is nice, so that he doesn't pick at it, and no bacteria can get into it. He'll be on an oral antibiotic for the next 10 days to help prevent infection. Here's what the incision looks like. (And really messy hair, poor guy!)
It really has been a good experience, much better than anticipated. The hospital is top notch and took very good care of him, I am very pleased. I also think that he'll be back to himself tomorrow. Yay for a pretty quick recovery! Good news too - activation is 2 weeks earlier than expected... January 9. We are now combining our equipment orientation with the activation on the same day. Thanks Faith!!!!!!! Here's to our bionic baby boy. There's no looking back!
Thursday, December 25, 2008
Merry Christmas! One year ago today, I was discharged from the hospital without my baby, who spent 6 more days in the NICU after being born early. That was really tough on us, and I wouldn't wish it on my worst enemy (if I had any). I felt guilty about having delivered 5 weeks early, as if it were my fault, and then he had to be hospitalized for 8 days. While in the NICU, they kept giving us bad news too: a heart murmur, a failed newborn hearing screen (3 times), among other things. It had never even occured to me that his hearing could be a problem. We left the hospital with 3 follow-up specialist appointments in January, and a lot of despair. We weren't that worried about his hearing, because they told us it was probably fluid or something (sound familiar?). We were much more worried about his heart, because the neonatologist scared the heck out of us in the hospital, telling us that our baby could die soon! I'll never forget the meeting with that doctor, and how incredibly sick I felt after talking to him. He should NOT be allowed to work with NICU parents. I never would have predicted a year ago that his heart condition would be manageable, and his hearing loss significant.
In January the audi got no response on any level from him, but told us he was too little to get accurate results, and that we should return in another month. On February 12, we returned. It was a snowy day, and Nate came home from school early because of the weather, so we headed to the appointment early. It was on that day that we found out Lucas was deaf. They (of course) called it "severe-profound hearing loss" but never called him deaf. I think for a while, I thought (and secretly hoped) that that level of hearing loss was in a different category than actually being deaf, but I soon came to realize it was one in the same, just some fancy politically correct term. They then referred us to CHOP, because of the CI program. That was also the first time we'd every really heard the buzz word, CI. Look where we are now.
This Christmas, I'm just really glad to have a beautifully happy, healthy baby boy. I am so in love with this kid! I never knew that I could feel love like this! He was our Christmas gift last year, and this year, we are giving him the gift of hearing. Isn't that amazing? Now, we just have to get through tomorrow...
Tuesday, December 23, 2008
Sunday, December 21, 2008
Yesterday was Lucas's wonderful 1st birthday party. I'm really quite pleased with how it went. I wanted it to be special, unique, memorable, and I believe that it was. We had mostly family and a few close friends, about 25 people. The video is of everyone signing "Happy Birthday" to Lucas while we sang. It was very emotional for me. On one hand, it was really cool that everyone was willing to learn and sign it, but on the other hand, Lucas had no idea that we were actually singing to him. In fact, he has no idea what singing is. Next year will be a different story, I hope! The video is a little long... I just didn't know how to shorten it. It will probably get boring after about 1 minute. The rest of the time is him slowly digging into his cake. He puts everything else on God's green earth in his mouth right away, but was quite dainty with the cake. Go figure. It was almost like it wasn't as much fun to get into, because he was allowed to get into it!!! In the end, he still got pretty messy, but it just took him a while. I think he just enjoyed the texture too. Don't forget to turn the playlist off first, before you watch the video.
Lucas got some very nice gifts... thanks everyone! We always seem to have therapy in the back of our minds, and Lucas got some toys that will complement his work with his speech therapist quite well. His Oma (my Mom) bought him a bunch of Snappy Sound books, based on the recommendation of Lucas's speech therapist. They're really fun! He also got a bunch of Little People toys, also based on her recommendation. She said that they provide lots of opportunity for descriptions and narration. So, we're set! Now we just need to turn on that hearing. 5 days until surgery, but whose counting?
This is a picture of the really cool lamb cake that my Nanny made for him to dig into! She made one for me on my 1st birthday too. It will be a tradition.
This is what we were left with!!! The long sleeved "shirt" bib worked really well!
The theme was "The Big 1"! I had these pictures printed in wallet sizes and gave them out as favors. They were a big hit! Lucas's birthday is on Tuesday (the 23rd). What a week we have ahead of us! I'm hoping and praying that surgery on Friday goes as well as his birthday party did!
Tuesday, December 16, 2008
I called CHOP today to request the make, model and color for Lucas's car, I mean ear. I'm still not totally convinced, but have chosen the beige/skin-toned Cochlear Freedom. Blue would be fun, but maybe not when he's 15? I saw on the website that you can buy stickers to jazz it up too, so there's an option. I've been getting a lot of questions lately from friends and family about what it will look like, whether you'll be able to see the implant, whether it will need to be replaced as he grows, etc., so I'm going to make some educational posts. I've gotten many resources from other blogs, so thanks. Check out this cochlear implant explanation. It has a very comprehensive explanation about how the CI works.
Well, enjoy your own countdown to Christmas, as I look forward to a birthday party, Christmas, and the gift of hearing for my baby boy.
Thursday, November 27, 2008
We had a long day at CHOP yesterday, not surprisingly! We had a scheduled, sedated CT scan, but we ended up not having to sedate him! It was wonderful! One of the nurses suggested that we try it without sedation, so we patiently waited for him to fall asleep (Daddy did a greeaaaaat job)! The scan only takes 3-5 minutes, and that's such a short test for the hastle of sedation, not to mention the fact that Lucas doesn't need all of those drugs in his system! We then saw ENT for our pre-op appointment, and officially signed the papers for Lucas' right ear to be implanted on DECEMBER 26th! Yes, the day after Christmas! It's actually perfect timing, as Nate and I will have the entire week off after surgery. We are thrilled and excitedly counting down the days!
Now the decision as to which company to choose... we have about 2 weeks left to make our decision, because they need time to order the implant. We're leaning towards Cochlear at this point, because of the babyworn processor option, but we haven't made our final decision yet! I'm sure that we'll be pleased with either company (the other choice is Advanced Bionics - our surgeon won't use Med El). Then we get to pick the color of the processor... oh, decisions, decisions! Happy Thanksgiving!
Monday, November 24, 2008
Thursday, October 23, 2008
It's been an eventful month for Lucas! On October 7th, we had 6 appointments with Lucas at CHOP, including his team evaluation for the CI. We met with a social worker, a SLP, an educational consultant and one of the CI audiologists. Lucas had more booth testing, and we finally have an audiogram! His unaided pure tone average is 120+ dB bilaterally. Response to speech information was obtained at 105 dB in each ear. Repeatable responses were noted at 110 dB at 250 Hz for each ear also. The CI audiologist also noted that although the responses were consistent, they may have been due to vibrotactile stimulation and not necessarily auditory stimulation. Basically, Lucas is quite profoundly deaf, and is getting NO benefit from his hearing aids because of the level of profoundness.
A week after those appointments we got a phone call informing us that Lucas is indeed a candidate for CI surgery from an audiological standpoint. We also had a phone call from Dr. K at the beginning of October with the results of Lucas' most recent MRI. His inner ear structures are all intact, meaning the cochleas are not malformed and the auditory nerves are present. That's great news for CI surgery! He did inform us, however, that Lucas has enlarged vestibular aqueducts (EVA) in both ears. Normally, the concern with EVA is progressive hearing loss, but Lucas' loss is so profound that it doesn't matter. I still have a lot to learn about EVA, but I don't think that it has any other implications, nor is it treatable, so it's just kind of there, and is simply helping us piece the puzzle together as to why Lucas is deaf. Dr. K also told us that from his standpoint, Lucas is also a CI candidate.
So, we have approval from audiology, ENT and insurance, so all we need is a surgery date. Yippee!!! Well, there are a few more steps, but the candidacy process is over, and this dream will soon be a reality! It still doesn't seem real that we're at this point already.
Last Friday Lucas had ear tubes put it at CHOP. We left the house at 4:45 AM to arrive at 6:15. It was a simple procedure, although he still had to be under general anesthesia. We were home by 2 PM on Friday and then had the weekend to be with Lucas following surgery. Now when Lucas has his CI surgery, they won't have to postpone it at all because of fluid on the ears. I'm also interested to see if he tests any higher in the booth because of the tubes. We'll see at Thanksgiving.
Because of his level of hearing loss and lack of benefit from hearing aids, the CI decision for us is a no brainer. The earliest he can be implanted is Christmas. We plan to implant in January and activate in February. Pending official approval next week, I will be taking a leave of absence from my teaching job for the rest of the school year following activation, and not returning until next September. I submitted my request on Tuesday. Lucas' therapy sessions will increase to once a week each (SLP and TOD), and we will be heading down to CHOP regularly for follow-up appointments. His needs will best be met with me at home, and that's where I really want to be. We know that a CI is not a cure for hearing loss, and that Lucas will not magically hear upon activation. It will take time, lots of work and even more comprehensible input to help him make sense of the noise that he will be hearing. And I'm so excited about it.
For now, we continue to sign with him as much as possible and to the best of our ability. It will not be as much of a priority after activation, but we still have 3 months until surgery, and 4 months until activation. We also want him to appreciate deaf culture and be able to be an integral part of it if he so chooses. Plus, he needs another language under his belt in addition to learning German and Spanish from Mommy and Daddy very, very soon (wink, wink).
Thursday, September 18, 2008
Friday, August 29, 2008
Interestingly. there's a new hearing impaired classroom in our school district, so I'm anxious to visit. Nate also has a new job teaching where I teach. We now make up more than half of the World Languages department at Manheim Central! (there are 3.5 of us... the .5 is a part-time teacher) Nate is closer to home and I love having him right next door to where I teach! We're able to spend more time together and devote more time to Lucas together.
Last week's MRI went pretty well. I'm glad it's over, and they better as heck have the slices of film that they need to determine the status of his cochlear implant candidacy this time. We're still waiting to hear about the results from Dr. Kazahaya. The insurance review has been completed. Our private insurance will not cover the surgery (what a surprise!), but our public insurance will, so we're very lucky about that. We're headed back down to CHOP on October 6 for an audiology appointment, and on October 7 for the next stage of the CI process. We meet with one of the CI audiologists, a social worker, and a SLP. All three appointments are right in a row. Then we have a pre-surgery appointment for the ear tubes and a meeting with anesthesiology. Ear tubes will be put in sometime in October. We don't have a surgery date yet, because I wanted to combine dates with our 10/6 & 10/7 appointments so that I can save my sick days as much as possible. The surgeon's calendar wasn't available yet, but I hope to hear soon. I want a Friday surgery date so I can spend the weekend afterwards with Lucas before going back to work. I'm so picky! But at least I know what I want.
Lucas popped 5 teeth this month is starting to be very mobile! He's not exactly crawling on all 4s, but he's doing an army crawl, which is getting him where he wants to go. He's still not really sitting on his own, although it's getting better... mostly because he wants to either crawl or stand, and doesn't have the patience to sit! We still get no response to sound, but he continues to vocalize, so we're pleased about that! We're just kind of in a waiting game. We continue to meet twice a month with his SLP, his TOD, and his OT, so that's keeping us busy! And we're still using baby signs with him to teach him pre-language. We need a way to communicate with him, since he responds to nothing. He is beautiful, happy and we couldn't imagine life without him. He has taught us SOOOOOOOOOOOOO much about life these past 8 months - what's important, what's not, and that his hearing is our number one priority.
Thursday, August 14, 2008
Our appointments went alright. Nate and I went without Lucas on Monday for our CI information meeting. I will admit that I didn't learn that much, but it was still nice to talk to someone about it and I got to see the implant and processors. We also discussed the three different companies that make the implant, so that we can make an informed decision on which one to choose. It's like picking out a car. We get to choose the make/model, and even the color!
On Tuesday we met with the AV therapist for an evaluation. Because he doesn't react to any sounds, we didn't really get anywhere, but continue to learn AV strategies, that we will definitely be employing when he gets implanted. It's not too early to learn these strategies.
Then we met with audiology on Tuesday, for new hearing aid molds and booth testing. Testing was quick, because we didn't get any responses. We'll try again next time. Nate and I also decided to get Lucas blue and white swirl ear molds. I thought it would come just in time for Penn State's football season. When Erin (our awesome audiologist!) asked if we wanted to get something other than clear, Nate and I both responded "sure, why not?" I think it's a good indication that we're finally accepting his hearing aids. Before we wanted to draw as little attention to them as possible, and now we want to add a little flair. Tuesday was good, because we like to chat with our audiologist(s) quite a lot! (Melissa too, if you're reading!!)
On Wednesday we met with Lucas' new ENT doctor, Dr. K. We learned 2 things. First, the MRI we had done on July 3 was not good enough. I'm not so happy with the local MRI group right now for their lack of knowledge and lack of professionalism for not calling me to let me know that they didn't know how to effectively perform the scan that I requested. So, he will have a repeat MRI next Wednesday August 20. Yippee.
The doctor also found fluid in his ears, although there was no infection. He wants to put tubes in his ears, so that when/if he's implanted, it won't postpone the surgery. I guess if there's either fluid or an ear infection, they won't implant. So, that surgery will be some time in late September or early October. I'm still working on those details. It's a simple procedure, that's supposed to take 7 or 8 minutes, but they still have to put him under general anesthesia.
So, we got some news we weren't expecting, but generally we had good appointments. I was hoping to have Lucas under anesthesia only 1 more time in the next 6 months, and instead it will be 3.
Although everything still looks good for CI candidacy, Lucas has definitely not been approved yet. We're still at the beginning of the process, with quite a few steps left before official candidacy. I talk about it a lot though, because I just have to believe that it's going to happen. It's our only hope.
Saturday, August 2, 2008
Wednesday, July 30, 2008
He said that it appears that Lucas has auditory nerves in both ears and he said "that's good!" Without auditory nerves the CI would not be possible, because the CI bypasses the cochlea and stimulates the nerve directly to create "sound". So I'm really excited that physically he should be a candidate! That's what we were hoping for. I'm sure that we will learn more August 11-13, when we are able to ask the many questions that we have!
Usually I don't look forward to going to CHOP, as it's just another reminder of Lucas' deafness. This time, however, I'm kind of excited. We will have our CI info meeting, an appointment with his AV therapist, another booth testing appointment to see if we can chart his hearing loss anymore (and be fitted with new ear molds) and then an appointment with this new CI ENT, who can discuss the MRI with us at length. Hopefully we can then move forward with planning his CI surgery. For now, it's off to a relaxing week at the beach on Sunday before that all takes place!
Monday, July 21, 2008
Thursday, July 10, 2008
We won't know the results of the MRI for a while, because I guess the radiologists in Lancaster are too inexperienced to read the MRI for what I'm looking for. It's been a long few days of many phone calls and frustrations, but I've realized that I will have to send the films to CHOP and have them read them there. Who knows how long that will take. The next appointment with the ENT at CHOP is August 20, so we might not even know until then. I really hope sooner though, as I am very, very anxious to hear.
On a different note, Lucas now has a speech-language pathologist (SLP) who has a lot of experience with HOH kids, and despite a very busy schedule, is willing to take on Lucas because she has a big heart for HOH kids. I have heard so many good things about her, and I really look forward to working with her.
Although we are signing with Lucas, it is no longer our first priority. It will be an excellent way to bridge the communication gap with our son (as it is with all babies), but our real goal is for him to listen and speak. I really figured that out when I sat down with the AV therapist at CHOP and we made up a dream sheet. She asked me where I wanted Lucas to be in a year, in 5 years, in 10 years. I realized that my goal is not for him to be fluent in sign language, but rather to be speaking and listening, period. Although we're not throwing signing out, AVT (auditory-verbal therapy) is our new priority. Some families with profoundly deaf children do not sign at all, so it's not impossible, it's just a different way of thinking. We're still doing Total Communication, but with a big AV emphasis.
Thursday, July 3, 2008
Nate and I then went to the cafeteria to get some breakfast, he left for grad school and I went to day surgery to wait. I was told the MRI would take about an hour and half, so I was figuring I would hear from the doctor by 9:15. From about 9:20-10:00, when I still hadn't heard anything, I got pretty worried. Since there are risks associated with sedating babies, I was terrified. Instead of continuing my worst-case scenario thoughts, I asked the desk to call and find out what was going on. They said he would be in post-op in 10 minutes. I was so relieved. Soon thereafter, I met with the anesthesiologist who said Lucas did really well, and then I got to go to recovery and see my baby. The MRI just lasted longer than anticipated, as the radiologist wanted some additional pictures with contrast.
When I got there, I was told that the nurses were fighting over who got to hold him. He woke up groggy, but pleasant. He was happy to see me. He drank half a bottle and then was wide awake, standing on my lap, smiling, waving his arms, and flirting with all the nurses. And so continued his day. He had absolutely no side effects from the anesthesia! That's good to note for future reference. We both had a good nap together in the afternoon, then went swimming at Grandma's pool. You'd never know that he had had general anesthesia this morning.
At this point, we have no idea what the MRI showed. It has to be read by a radiologist, then relayed to our pediatrician, then we can find out the results. I hope to hear by the middle of next week. I'm just trying not to think about it. These results will either make or break his chances of CI candidacy, and his chance to ever hear.
Sunday, June 29, 2008
I try to picture a complete absence of sound, and it's so hard to do. The other night, I forgot to turn the sound on our tv back from the DVD player, so I had to watch the tv in silence (I couldn't get up at the time). It was so annoying! I was watching "So You Think You Can Dance." I tried to read lips, and I did a little bit, but it was just not the same watching them dance without the music. That's Lucas' reality. We watch the Baby Einstein DVDs, and he can't hear the music. At least it's visually stimulating though, and the puppets and caterpillar make him laugh out loud.
Lucas really hears nothing. Even after turning up his hearing aids, and wearing an FM system, he will not react to anything. Maybe it's a function of age, but he's had the hearing aids for 3 months now, and nothing. I try to elicit a reaction. I find loud things in the house and stand so that he can't see me. Nothing. I work on the ling sounds (ah, ee, oo, m, sh, s) that he needs to access language. I thought last week sometime that I was getting a reaction to "ah", but not any more. I just can't easily reproduce 90 db at home. And even if I could, it might sound like a whisper to him.
I seriously ask myself on a daily basis why God would have done this to Lucas. I really wish I knew, but I know that I will never, ever know. I hope that the pain will some day go away, but right now it's still very, very real. I haven't quite made it to Holland where I can at least understand some of the language, since there are many similarities to German. I'm currently stuck in French-speaking Belgium. I guess there's at least amazing chocolate and awesome beer there though. I'm still on my way. We will make it to Italy someday, I'm certain of it (or at least Italian-speaking Switzerland, where I think I like it better anyway).
Wednesday, June 25, 2008
We returned from CHOP this evening. It was a relatively uneventful day. It wasn't particulary bad, and it wasn't particulary good. I just feel like we're kind of at a stand still. We only had one appointment today (compared to our usual 2 or 3) and it was with our audiologist, Erin, who we like very much, by the way. The main purpose today was to get fitted with new hearing aid molds, as we need to do that every few weeks because he outgrows the old ones so quickly. She also turned the volume up to around 100 db on the hearing aids, since we're seeing no benefit yet. We put him in a sound-proof booth to see what he would do (he sat on my lap during the test). We think that we got reactions from him at 105 db, the highest the test goes (I was wrong, before I said the test went to 120 db). That doesn't necessarily mean that he can only hear at 105, but we at least got some kind of reaction there. So I guess we can say that his hearing is between 90 and 105 (in both ears), which makes him quite profoundly deaf.
I did schedule 5 more appointments for August though - our CI info meeting, another hearing aid check (and ear mold fitting), an evaluation with speech and language pathology, an appointment to see the ENT and another with genetics. I'm trying to get as much in as possible before I return to school on August 21 - it will be much easier that way.
Our next excitement is a sedated MRI on July 3, 1 week from tomorrow. That will be lots of fun. (Some days I'm more cynical than others... today just happens to be one of those days.) I'm really just not looking forward to having him sedated. That test will probably determine his CI candidacy though, so it's quite important and also stressful at the same time, to say the least.
Saturday, June 21, 2008
Please don't misunderstand me, I would not trade Lucas in for the whole, wide world! He means everything to us! We would love him just the same, hearing or not. His hearing loss has just thrown us for a loop. We had always dreamed of raising bilingual, or maybe even trilingual children, always wondering why people who had the ability to do so never took advantage of it. Lucas may still some day learn Spanish and/or German, but it's no longer a priority. We even gave him an international name so that we could travel to German and Spanish speaking countries and have them pronounce it with ease! That's how much we thought about it. That's how important it was to us.
We truly rejoice in his life! He is such a joyful little boy and we can't imagine life without him! God obviously has a special plan for us, and a special plan for him, even if I have a lot of trouble remembering that on a daily basis. He will be okay, and he will live a fulfilling life. The next few years will be trying though. We're doing the very best that we can possibly do for him, and nothing less.
Next time you meet someone with a special needs child, no matter what the circumstance is, don't tell them that it could always be worse. It's just not your place to make that determination, even if it is true. You stand there with your perfect child, who has reached all of his or her milestones on time, has never spent a day at the doctor other than for a well-baby visit, nor a minute in the hospital other than at birth, and you don't even know what a specialist is. You try to make that person feel better by telling them their situation is not that bad, but you really have NO clue what it's like. Welcome to Holland.
WELCOME TO HOLLAND
c1987 by Emily Perl Kingsley. All rights reserved.
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Colosseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very, very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
Thursday, June 19, 2008
It's funny, when we first heard the buzz word "cochlear implant" when he was diagnosed with the hearing loss in February, we knew so little about it. Even when we met the audiologist at CHOP at the end of March, we reacted to her like "why wouldn't everyone want a cochlear implant for their child?" She looked at us astoundedly. That's when we learned about the deaf and the Deaf community. We realized that we had a lot to learn (and still do, of course!). It's still a very positive thing in our eyes though. The fact of the matter is that Lucas lives in a hearing world and we want to provide him with every chance we can to live as an integral part of it. It will, however, never change the fact that he is deaf. I must keep reminding myself of that.
As of now, it appears as if Lucas is not getting a lot of benefit from his hearing aids. We have yet to see him react to us or to sound. That's pretty frustrating, let me tell you. I'm not losing hope that it will happen one of these days. We still wear them every day though. At the very least, he will get used to having something on his ear, because if he does get a cochlear implant, something similar will be there.
Ok, so the next big step in the candidacy process is the MRI, which is scheduled for July 3. Thank goodness he can have that done here in Lancaster. He has to be sedated for this though, because he can't move at all, so we're waiting until he is 6 months old to reduce any risk associated with sedation. The purpose of the MRI is to see the structure of the ear. If he is missing the cochlea or the auditory nerve, he will not be a candidate. The fact that they found some hearing in his right ear at 90 db at a middle frequency indicates to me that those things are at least present in the right ear, so that's good news. This link provides a list of other factors for candidacy. As far as I'm concerned, he meets all the other basic requirements. We're just waiting to hear about the MRI now, and to see if we meet CHOP's requirements.
If you're interested, Nate and I just watched a documentary on the history of the deaf community called Through Deaf Eyes (PBS, 2007). It was very informative!
Sunday, June 15, 2008
Well, Nate's first Father's Day came and went without him. I guess it was kind of bad timing, taking 40 kids to Costa Rica on Father's Day, but what are you gonna do? There will be many more to come. I just want to make it public what a wonderful father Nate is. I feel so blessed that he is the father of my son. He's so good with him and from the day he was born, Nate has played a very active role in his life, changing diapers, feeding him, bathing him, playing with him, and attending all of his doctor's appointments that he possibly can. I appreciate his support beyond measure. He didn't sign up for this "special baby" thing, but he surely has embraced it. Nate can get Lucas to laugh like no one else can. Lucas adores his daddy, and so do I. I miss him to pieces right now, and I don't know what I'd do without him.
Before we even learned that there are various theories on communication methods in the deaf community, such as cued speech, sign language, auditory-verbal, auditory-oral, total communication, etc., Nate and I naturally gravitated toward total communication. We chose Total Communication as our communication option for Lucas because it uses multiple and reinforcing methods of communication to support both receptive and expressive language development (sign, voice, speech reading, gestures, cued speech, facial expression, …).
It seems to make the most sense to us to provide him with lots of options! As language teachers ourselves, it seemed like a natural fit to teach him ASL. What's another language when you already speak 3? Don't get me wrong, we want Lucas to hear and speak in the worst way, but we also want him to have options. I almost feel as if we would be doing him a disservice if we didn't teach him sign language. When he's older, he can then choose for himself.
Here are definitions for the various communication methods in the deaf community.
Tuesday, June 10, 2008
Welcome to Lucas' blog. We hope that we can more easily keep you updated on his progress through the use of this blog. Lucas is now 5 1/2 months old and growing like a pretty weed! He's all smiles and giggles, and he's working on learning how to sit. He loves to stand too. He's a strong little bug! He's also very vocal, which is good, as he could easily lose that because he hears nothing. His hearing loss is categorized as severe-profound sensorineural hearing loss. There is still no known cause.
Lucas was born on December 23, 2007, 4 1/2 weeks ahead of schedule. He was 5 lb. 7 oz. and 18.5 inches. He spent 8 days in the NICU: a few days on a CPAP, and a few days under the bilirubin lights. He did not pass his newborn hearing screening in the hospital. I found out later that the screening only tests up to 35 decibels. We were refered to an audiologist at the end of January for further testing. At the first ABR (Auditory Brainstem Response) test (January 22, 2008), we were told that the results were inconclusive because his ears were still so small (his adjusted age at the time was 0). Looking back on that, what occurred is that they got no response up to 90 decibels, and were hoping to blame it on his age.
We returned on February 12, 2008 for another ABR, and on that day, we received the news that Lucas' hearing loss was severe-profound, and that they had, in fact, gotten no response at the highest end of the test (90 decibels). We were referred to the Children's Hospital of Philadelphia for further testing. On March 19, 2008 we headed down to Philadelphia to meet with a pediatric ENT and a pediatric audiologist. The results were the same, but the ENT found amber fluid on his ears, which could have been affecting the level of his hearing loss. He was fitted with hearing aids, and we returned on March 28 to pick them up. I had no idea what we were in for with the hearing aids! They're very sensitive and give off feedback like a microphone if they're not in perfectly. Thank goodness they fit better now! He also doesn't mind them that much yet.
Most recently, we went back down for a hearing aid check and his 4th ABR. At that time, the ENT said that his ears were clear of fluid, so we would be able to get an accurate ABR reading. That's when they found hearing in his right at 90 decibels at a middle frequency. The test only tests up to 90 decibels, so we don't yet know where his other ear fits on the audiogram. It's not exactly hearing as we know it, but it's not a total absence of hearing either, so that's good news. Check out this speech banana to understand better what 90 decibels sounds like.
Our next visit to CHOP is June 25. At that time, we will test Lucas' hearing in a sound-proof booth. That test goes up to 120 decibels, so hopefully we'll have a better idea. He will still be young though, so we may not know that information for a while. They will chart his hearing based on his reactions, but he may not react a lot because of his age. We've been told not to get our hopes up.
For now, Lucas has hearing aids. We don't know the exact benefit of the hearing aids, because we can't exactly ask him if he hears us. Based on his audiogram, he should be able to hear some very loud sounds. However, he cannot understand spoken language because of the severity of his hearing loss, even with the hearing aids. We still wear them as much as possible though, because we just don't know.
Your prayers are always appreciated.