Busy Schedule

Oh my. Life is about to get really crazy around the Conary household.

No really.

We'll go oldest to youngest.

Brian works full time, coaches cross country after school, works at the local rec center on Saturdays, and works security at the home football games (about once a week). He's also starting his training for Myrtle Beach's Full Marathon. He's working up to around 80 miles a week I think. Oh yeah, plus we'll be starting Ward Conferences again soon so he'll be gone a bunch of Sunday's traveling.

I am also coaching cross country with Brian, plus keeping up with all of the appointments with the boys (see below). Not to mention the normal day to day of keeping the house clean and tidy for all the teachers and therapists coming to the house nearly every day.

Brandon is starting his Parent-Child program up next week. That's twice a week (the teacher comes to our house). I also am planning on starting some homeschool preschool work to get him ready for Pre-K next year.

Malachi has the craziest schedule. He's seeing a physical therapist once a week, a speech therapist once a week for now, but when his cochlear implants are activated then we'll go to twice a week. We'll be having an early interventionist from the deaf and blind school come once a week to work with Malachi, and a coordinator from the same school to make sure he's progressing the way they'd like him to 1-2 times a month. Plus we'll be going to MUSC for mappings (adjusting his CI processor) at first every 2 weeks, then 4 weeks, etc.

Writing it all down almost makes me have an panic attack. How in the heck are we going to be able to get this all done? It's all good stuff that are really not negotiable. I really need to get a good routine and schedule going to keep us (mostly me) on track and organized.

P.S. One week until Malachi's first CI surgery!

P.P.S. We chose which brand of CI we were going to get. We chose Cochlear.

P.P.P.S. If you have any questions, leave a comment and I'll answer it in a post or email you back.

Answering Questions

In this post I am going to answer questions from friends and family about Malachi and CIs.

Do you know why Malachi is deaf or when he became deaf? At this point we don't know. Malachi failed his left ear and passed his right ear at the newborn screening test at the hospital. Then he failed two tests at an a hearing clinic at 1 and 2 months old. They referred us to an otolaryngology office who gave him an ABR while he was awake and restless which they hesitantly passed. She said he "barely" passed and that if something seemed off around 12 months to bring him back and they would test him again. When Malachi wasn't sitting or making sounds at 9 months we were sent to MUSC and saw a developmental doctor who suggested we go to pediatric audiology to test him since he had failed tests in the past....and the rest is already documented here on our blog. We have done some genetic testing and are waiting back for the results. His two brain MRIs are normal and don't show any structural deformities. We suspect it's congenital and it doesn't appear that I had a virus or anything to have caused it.

How does he react to hearing loud sounds with his hearing aids? After we first put on the hearing aids Malachi just stopping moving and looked around, like, "what is all that?" It likely is just static type noise to him. That is until there is something loud like a cowbell. When the speech pathologist rang it on his left side (the ear that actually hears a little something) he would turn to his left with a slightly confused face...."what the heck is that" and then he smiles.

Jenny asked, "I've heard that with cochlear implants they don't hear the same as we hear, that's its more electronic? I'm sure you know more about it, can you explain it a little? I'm just curious as to how it all works." I'm glad Jenny asked because I didn't even think about explaining how CIs work. Basically cochlear implants bypass the ear drum. The picture below is helpful in trying to explain what the implant actually is:

On the outside (what we see) looks similar to a hearing aid, which is the processor that receives the sound, with an another piece behind the ear which is held onto the head by a magnet on the receiver/stimulator inside the skull. The receiver wire is fed through the cochlea. Normally, your ear drum takes sound and sends it through the cochlea, to the cochlear nerve which sends it to your brain. With CIs the processor on the persons ear takes in the sound which is transferred to the receiver and then put into the cochlea using electrodes on the wire. Impulses are sent through the cochlea to the cochlear nerve to the brain. From what I've read, some have described it as sounding robotic. Which makes sense because the sound is being converted by a machine essentially. It also seems like there isn't much tone difference either. So what he'll be hearing will not be what we hear. Now, I'm not a scientist so I'm sure I missed a bunch of things or didn't explain 100% correctly, but that's basically how I understand it. Google "cochlear implants" and you can find tons of information from the FDA and other reliable sources.

Where are you learning ASL? I've actually been wanting to learn for a long time so I was just wondering if you have found a great website or videos that help? If you are serious about learning ASL, I would definitely suggest taking a college type course. However, since that's not an option for us we've found a book that we like along with a couple of websites that are pretty good. The most important part is having someone to practice with (Brian and I have to rely on each other). See if there is a local deaf community get together near you. Those often meet at a coffee shop once a week or so, that would be great practice. At this point we are using www.aslpro.com, a basic pictured ASL/English dictionary and this book:

http://www.amazon.com/Signing-Kids-Revised-Mickey-Flodin/dp/0399533206/ref=sr_1_1?s=books&ie=UTF8&qid=1313506377&sr=1-1

(We love this book, it's not just for kids, it's our go to book for ASL)

Why we chose Cochlear Implants

On June 22, 2011, Malachi’s first birthday, Malachi was diagnosed with bilateral profound deafness. Eventually we found out that he hears nothing up to 110 decibels in his right ear and hears a little at 100-110 decibels in his left ear. As of today we still do not know the cause. MRIs show his ears as normal and we are waiting for genetic testing to come back. There were never any viruses that we know of that would have caused him to loose his hearing. After much thought and prayer we have decided to give Malachi Cochlear Implants (CIs). We know there are mixed feelings among our friends and family and we are writing this to explain our reasoning so that we don’t have to repeat it hundreds of times. :)

First, Malachi is a good candidate for CIs. Malachi will never learn to speak without cochlear implants. Even with hearing aids he can barely hear a loud cowbell in his left ear. This type of hearing is not functional for speech. Malachi is also still under the age of 2 which is prime time for the implants to be fully effective and for him to receive the most benefit. The ENT called his cochlear nerves “robust”, meaning they are healthy and large. Malachi doesn’t have any other learning disabilities and is proving to be a great problem solver so there are no concerns that he won’t be able to figure out the CIs once in place.

We believe in giving our children every opportunity to be and do whatever they want. Some view implantation as taking away the child’s right to choose. However, if we waited until he was “old enough to decide for himself” he would be too old for the CIs to be of any benefit to him. We feel that by not implanting him, we would take away his right to learn how to speak. Giving him the CIs now would give him the opportunity to learn speech. If he later in life he decides that he wants to choose a deaf life he could leave off his processors and have both options.

Another reason is that here in Myrtle Beach, South Carolina there is virtually no deaf community. There are no ASL classes at our local community college or University. The nearest deaf school is over three hours away across the state. When he enters school he would likely be put in a special ed class with an ASL interpreter. Malachi is in no way a child that needs special ed. His personal progress would be slowed. With the economy the way is it, we can’t count on finding a job near family and a deaf community. We feel strongly that we need to live near family. We are not willing to gamble that we might hopefully find a job in a place that has a deaf community. The nearest deaf Ward (that’s a type of congregation in our church) is in Washington D.C. over 8 hours away and the next closest is in Houston, Texas. We would end up interpreting for him everywhere we went: church, school, play groups, etc. This would put a huge strain on not just Malachi but the whole family. Not to mention we would need to sign every conversation at home (you can’t sign ASL and speak English at the same time; they are different). This would not only be hard on Brian and me (which we’d be willing to deal with), but it would change how Brandon and the rest of our children communicate with us.

Although Cochlear implant surgery is considered major surgery, children are usually sent home the same day. Just as having your gallbladder removed is major surgery-you usually go home the same day. In this day and age, technology has moved forward where the techniques are more sophisticated and perfected. The incision site is small enough to not be noticeable behind the ear. We will also be doing two separate surgeries as MUSC does not do bilateral surgeries. The implants are continually improving, and there is no reason they shouldn’t last for a long time. Also, our insurance will cover the surgeries and implants, plus there is a program called TEFFRA that helps families with no insurance or insurance that doesn’t cover them that we can qualify for.

We still plan on teaching Malachi ASL. Initially, we won’t introduce more sign language than he knows after his activation(s). It’s important for him to learn to listen to his implants. Slowly but surely we (as a family) will become, at minimum, conversational in ASL. Honestly, even with the implants he will still be deaf. He won’t be able to wear them all the time. He can’t shower, or sweat too much with them on. He won’t sleep with them on. There will be times when the CIs aren’t available and he/we will need to communicate. We never and will never tell him or anyone else that Malachi was “broken” and we “fixed” him. We view the cochlear implants as a tool, not a cure. Just as hearing aids are tools to help people hear better, cochlear implants will help Malachi hear better. Hearing aids don’t work for Malachi. That’s not an option. We hope to give him all the tools to function in both the deaf and hearing world. We want him to do whatever he wants with the least amount of restrictions as possible.

We have been praying fervently to know what the best option is for Malachi and our family. We feel sure that cochlear implants are the best route. We are nervous and anxious because it is a big decision that we can’t take back. But we trust in the Lord and know he has guided us in this decision. We love Malachi so much and know he is extra special, and we are grateful that the Lord allowed him to be in our family. We know this road will be hard and times will be tough, but it is all worth it to see Malachi grow into the young man that our Heavenly Father plans for him to be.

Malachi's first surgery is going to be on September 7th, and the second ear will be done on October 12th.

We will continue to update on this blog his progress. If you have questions, please ask! We are so grateful for all your love and support.