Keep Looking Up

(I have to give credit to my friend Katie Healey for coming up with the post/movie name "Keep Looking Up". )

Our audiologist appointment was about an hour long. It went great. We had about 23 minutes of video by the end. I spent 2 hours cutting it down and making this movie!




On a side note, we also saw the pediatric ENT for a post-op. Malachi's ear is completely and perfectly healed. The dermabond is still peeling off and he said it was no big deal, if it's not off by the next surgery (Oct 12) he'd just take it off during surgery.

However, Malachi has been sick (I even had to take him to the ER two nights ago). Our pediatrician and the ER doctor weren't sure, but didn't think Malachi had an ear infection in his left ear, the one that's implanted. The ENT said that it was definitely infected yesterday. Good thing the ER doctor thought it was best to put Malachi on antibiotics since he is really good at getting ear infections. We had a follow up with the pediatrician today and she got to see what Malachi's ear looks like for sure infected.

So now when we implant his right ear we are going to put tubes in as well. Whenever he gets a cold/stuffy nose/allergies he gets at least one ear infected. We've dealt with about 9 ear infections since January! I'm over it I tell you!

Now we're moving on. Malachi can hear a door bell, loud clapping, a elevator bell, and a toy train whistle. I'll post later about the details of the cochlear processor and all that fun stuff. Hooray for technology!

Nucleus 5 Voluntary Recall

Friday September 16th, just 9 days after Malachi had received his first cochlear implant I received what felt like a devastating email from Cochlear. It read:

"As a valued member of the Cochlear™ Community, we would like to thank you for partnering with Cochlear for your hearing journey, and supporting others in the Community. You may have recently learned of the Cochlear Limited voluntary recall of the Nucleus® CI500 series cochlear implant. We would like to provide you the latest information regarding this announcement, and assure that you, or your child, can continue to safely hear and use your cochlear implant system."

I simply was shocked beyond believe. How in the world was this possible?

This is the announcement at www.cochlearcares.com:

"Cochlear Limited is undertaking a voluntary recall of the unimplanted Cochlear Nucleus CI500 cochlear implant range.

While less than 1% of CI512 implants have failed since launch in 2009 , Cochlear has identified a recent increase in the number of Nucleus CI512 implant failures.   In an abundance of caution and with our recipients in mind, Cochlear has issued a voluntary recall of the Nucleus CI500 range of cochlear implants while it further investigates the issue.

No implants outside the Cochlear Nucleus CI500 range are affected by this voluntary recall including Nucleus Freedom implants which remain available.

The Nucleus 5 external devices (Nucleus CP810 Sound Processor) and any previous generation sound processors are not affected by this recall.

It is important to note that all existing Nucleus CI512 implant recipients can continue to use their system as normal. 

If a Nucleus CI512 failure occurs, the implant safely shuts down.  In the event of a failure, recipients can be re-implanted with the Nucleus Freedom implant range which remains available.  Nucleus Freedom is fully compatible with the Nucleus 5 Sound Processor System which is not affected by this recall. 

For people considering a cochlear implant, Cochlear recommends the use of the Nucleus Freedom range of Cochlear implants which are fully compatible with the Nucleus 5 sound processor system.  This combination of Nucleus Freedom and Nucleus 5 sound processor system does not sacrifice any of the performance benefits of the Nucleus 5 processor system."

So what are we going to do? The following Monday I contacted Malachi's audiologist. She had only briefly heard about it a day before we did and at that point didn't know anymore than us. Basically, what will happen for Malachi is that he will still get his external processor Nucleus 5 (the part that looks sort of like a hearing aid) for his left ear. But when it comes time (Oct 12) to implant his right ear, he won't get the Nucleus 5 internal implant. They will give him the Freedom which is the Nucleus 5's predecessor. It's still a fantastic implant and will work with the Nucleus 5 external processor. So inside his head he'll have two different but very similar internal implants. But on the outside he will have two Nucleus 5 external processors. I hope that makes sense to everyone :)

At first I cried and cried. I so upset. But since then I have calmed down and realized this is one of the risks we were willing to take. The processor still has a 99% of succeeding. Really the only difference between the Freedom and Nucleus 5 was the size, but i think the Nucleus is something like 25% smaller. Not extremely noticeable. I'll keep you updated as we learn more. :)

Healing Nicely: Left CI

Sorry for the low quality pictures, but I wanted to quickly document how well Malachi's incision is healing. The Dermabond is starting to flake and peal off. It is the worst temptation to peel it off!

Malachi caught a cold and it is aggravating his asthma so he's not feeling too great right now. We're just praying it won't turn into a ear infection so the activation can go as planned next Wednesday!

The Beginning: Part 3

(Read Part 1)
(Read Part 2)


The month leading up to Malachi's sedated ABR felt like a lifetime to me. The more I watched him the more I suspected that he wasn't hearing. We had Skyped with a deaf friend and she even told us that she didn't think he heard anything because of the way he was wasn't reacting to thinks going on around him.

Then for some reason Malachi's ABR had to be pushed back a week. I can't remember why. Something to do with OR availability. I was so angry. They moved it to his first birthday and two days before we were planned to fly out to Oregon to visit my family for two weeks. I was already going to be stressed out and crazy busy! Not to mention getting sedated with general anesthesia is a really good way to ruin a birthday.

Finally, the day came and we arrived at MUSC. Malachi had started to get a cold. I should mention that Malachi gets ear infections sooo easily. If he gets any sort of mucous in his nose, it drains and aggravates his asthma, makes him cough and then he gets an ear infection. I'm not kidding. I stayed up the whole night before listening to Malachi cough. I knew if he had an ear infection they wouldn't be able to do the test, and then we would have to wait 2+ weeks until we got back from Oregon. I was on the verge of having a panic attack. Lucky for us he did have some fluid in his ears but no infection. Hooray!

The audiologist told us it would take 45 minutes to an hour. And an hour would be the absolute max. After an hour and 15 minutes of waiting my brain started to implode. What was going on in there? Did they find something bad? WHERE IS MY BABY?! Just after the front desk nurse called back there the audiologist came out and got us.

We were walking in the OR halls and she pulled us off to the side. It was all very serial...like we were in a movie. I always thought it was unrealistic that doctors in movies would give people the bad news in the middle of a hall with no privacy. Oh no people. It's real. It happened to us.

She said "He doesn't hear anything." We said together, "Okay."

I think she was surprised by our un-reaction. We had mostly come to terms with the fact that Malachi had hearing loss. I just wasn't quite expecting that he heard nothing. She continued to tell us that the machine only tested up to 90 decibels and they didn't get any readings up to that point on either side. We almost felt relieved. Now we know what's wrong and everything made sense. We spent months worrying about what could be wrong and now we knew that the only thing wrong was deafness. I could deal with that.

The next thing she said surprised us. "I think he'd be a great candidate for cochlear implants and if you want we can schedule an appointment with a pediatric ENT here and get him on the fast track." I didn't think cochlear implants were even on our radar. I had heard that insurance didn't cover them, and they were about $60,000 a pop. I had friends who were very against cochlear implants and here this doctor was talking like we could get them, just like that. I was confused so we told her we needed to think over things on vacation and we would contact her when we got back.

Malachi's mini birthday party later that evening with the family sort of flopped because he was still pretty drugged up. He didn't want to eat cake and went to bed an hour early. I was so disappointed. Birthdays are a big deal to me and I felt like we had ruined Malachi's first one. We were using the Insanity workouts at the time and after the boys got to bed we started working out. That's finally when the heaviness of the day's events came slamming down on my shoulders. I just started bawling. Not pretty sighs and weeping. Crazy, mad-woman-like bawling and sobbing. I wasn't sad because Malachi was deaf. I was sad because I felt unqualified. I had no idea how to raise a deaf child. I am terrible at languages. I joke I can barely speak English. How in the world was I going to be able to learn ASL? What school would he go to? Will he have any friends? Am I going to be interpreting for him forever? It was all so overwhelming I just had to go to bed. I couldn't keep my brain from going crazy over questions that I just couldn't answer right then.

Little did I know that our two week vacation in Oregon would help us make one of the biggest decisions of our lives.

To be continued....

The Beginning: Part 2

(Read Part 1)

Months went by and we didn't suspect anything. Then he wasn't sitting at 6 months. I figured he'd be a late bloomer, he is sooo relaxed and content. When his 9 month well child visit came up and he still wasn't sitting independently or rolling or babbling (nothing other than raspberry/snorting type noises) I was pretty concerned. I knew in my gut something was off. We were very lucky to have an amazing doctor who listened to everything I had to say. She did a very thorough exam and noticed he had low muscle tone in his stomach. She told me she wanted Malachi to see a pediatric neurologist at MUSC as well as get Malachi set up with BabyNet, a early intervention program for delayed children in South Carolina.

The pediatrician had to make the appointment...not us. A few days later the office called me and told me that we could not just get an appointment with the pediatric neurologist. We had to see a developmental delay doctor first. And in order to see her we had to fill out a packet about Malachi, send it in, and wait for a phone call to be accepted and set up an appointment. I thought for sure it was going to take forever, and I just wasn't willing to wait for some doctor to decide Malachi's fate. So I started searching for any other pediatric neurologists that would see Malachi. To no avail. The only pediatric neurologists in the state, under our insurance that would see a child for developmental delay was at MUSC. I gave in and filled out the paper work expecting to not hear anything from them for weeks.

About a week later I got a phone call from DD (developmental delay) at MUSC asking if we could come in the next day. Some meetings had been cancelled that freed up a doctor to see Malachi. Lucky for us it was spring break so Brian didn't even have to request time off.

The next day we were sitting in a room waiting for the doctors (you see a resident first, then both the resident and attending). I remember it being hot. I was so nervous. When the resident came in she asked a ton of questions about Malachi's habits, gestures, milestones, eating. All that fun stuff. I felt drained. What more could I tell them? Then they start doing some play tests to assess his fine and gross motor skills. I felt embarrassed  Obviously he was behind normal development. I felt like it was my fault. Did I leave him in his bouncy seat or swing too often? Was I not talking to him enough? I felt like a horrid mother.

The action plan was to do a general brain MRI just to make sure there wasn't anything obvious, and since he had failed hearing tests in the past she wanted him to see a pediatric audiologist there at MUSC. We also made an appointment with the pediatric neurologist. The MRI and audiologist appointment were made for two weeks later and we couldn't get into the neurologist for over 3 months.

We also had Malachi assessed by BabyNet. He failed all three categories: physical, speech, and cognitive. He mostly failed cognitive because at that point there was no way to tell otherwise how his problem solving skills were. For a 10 month child if they fail physically and speech wise, they almost always fail cognitive as well because the categories cross over into each other. That enabled us to get physical therapy, speech therapy, as well as a early interventionist coordinator that would work with him and the family.

Two weeks passed and we traveled back down to MUSC. The MRI was sedated and that was the first time Malachi had an IV. I was a nervous wreck. I hated having to hold him down while the nurses poked him. When I asked the nurses how it went, they said obviously nothing major was found because they are letting you go home! That was a relief.

All we had to do next was the audiologist. She ended up setting us up in the sound booth. Malachi wasn't being very cooperative and I was thinking "great! now we're just going to have to come back to do the test again!". Some of the sounds were so loud that my ears and brain felt like they were rattling. When it was all done she came into the booth and said, "I'm sorry but I don't think his is hearing much if anything at all." We were stunned. What? She checked his ears for fluid and everything seemed normal so anything hearing loss was permanent. She said she wanted to do a sedated ABR (we laughed at that because we seriously JUST had him sedated less than an hour before...). She told me that any hearing tests done on a small infant while awake are usually unreliable.

We walked out of there in a daze. It wasn't until we were half way home and I was telling my mom of the details that I realized what had happened. Oh. My. Word. We don't think Malachi hears very well! I wasn't  convinced that he was completely deaf. I had seen him react to sound! Or so I thought. Malachi's sedated ABR was scheduled a month away. The longest month of my life.

To be continued.

The Beginning: Part 1

I started this blog when Malachi was 14 months old. A friend made a good point that when people are confused and looking for help and support is before and leading up to the big decision and where we are at now. I am going to start from the beginning and write several posts leading up to this point.


June 22, 2010- Malachi was born. The labor was perfect. The doctor said that the umbilical cord was wrapped around his neck, but he didn't seem concerned. The doctor was able to unwrap the cord pretty quickly, and Malachi's AGAR score was a 9 (out of 10). Malachi was never even a little jaundice (because he was a champion eater). So no worries. Before we left the hospital Malachi had the routine newborn hearing screening. They asked me to feed him so he would sleep through it. I called them to come pick Malachi up after a feeding and they didn't come for near an hour and half. I knew he was going to be hungry during the test. They said he wasn't very cooperative and cried during parts of the test. He failed his left ear and passed his right. They told me not to worry because sometimes baby's have vernix in their ears and it kind of clogs them up. We would need to go in an have him screened again in one month just to make sure.

At one month we went to a hearing center to get another screening done. He didn't pass either ear. He was pretty cooperative that time and she thought maybe his ear canals were just a little too small because they didn't have the small plugs that the hospital has. So we can back a month later, he was now 2 months old. Again, he didn't pass either ear at all and he was cooperative. She decided to refer us to an otolaryngology clinic.

September 2010 - The otolaryngology appointment was a couple of weeks later. Malachi was almost 3 months old. The doctor decided to clean out his left ear because there was quite a bit of wax in it before they proceeded with the ABR. I had tried to time the appointment right after he had eaten but with all the waiting and then having his ear cleaned out he was ready for a feeding and was annoyed from being messed with. He was really uncooperative and I remember thinking that we would have to come back in for another test. I ended up feeding him during part of the test and then he would drift off to sleep, then wake up and eat again. Then he would get upset about the stuff on his head and ears and cry. After what seemed like forever, she told me that she "hesitantly" passed him. I was a bit confused how that worked, I didn't know anything about hearing tests. She told me to watch out for any signs that he wasn't hearing and if something seemed off by the time he was 12 months to come back in for a retest. That was good enough for me, I assumed nothing was wrong. I called family and friends and told everyone that Malachi was fine.

To be continued

Malachi's Scar/Incision Left Ear

Warning. Semi-graphic photo of incision site. Don't look if you don't have the stomach for it!

Malachi is still wearing his head gear bandage but rips it off every once in a while. I'm keeping it on for a little while longer mostly  because I'm having the worst time looking at the incision. The outside is held together by Dermabond (skin glue). It looks shiny and wet even though it's dry. It kind of makes the incision look like it's draining and oozing (it's not really). It kind of freaks me out. The incision itself is no longer than 2 inches and runs along where the back of his ear connects with his head. His scar will hardly be noticeable and should be further covered by his processor.

Left CI Surgery

Today Malachi had his first CI surgery.

We were told that we needed to check in at 6 am. This meant Brandon spent the night at Oma and Opa’s house. We woke up at 3 am to leave the house at 3:30. There was virtually zero traffic (duh!) and we even made it there 15 minutes early. After about 30 minutes after checking in I noticed that nearly 6 people that had checked in after us were taken back. Turns out that the scheduling nurse told me the wrong time to check in. We didn’t need to check in until 7:10. So we spent about an hour twenty minutes in the check in room for the OR.

Malachi has some congestion and a little cough so they checked his ears and lungs to make sure he didn’t have an ear infection or wheezing. He passed, so we started with the pre-op.

They put him in a little gown (he looked soo cute). They let him play with some toys on the gurney. First they gave him some Versed, it’s like valium for babies. Malachi got super loopy and couldn’t sit up. Once it was in full effect and we had talked to all the nurses, anesthesiologists, and surgeons we gave hugs and kisses and watched as they rolled our little boy to the operating room.

When we checked in they gave us Malachi’s patient number. In the OR waiting room there was a big screen with the patients’ numbers color coded describing where the patient was. For example “Patient Operation in Progress” would show next to Malachi’s number and was colored orange. It was very comforting to watch his progress through the steps of operation. After about and hour and 45 minutes his nurse called down to the waiting room and told us they were putting in the implant. About 35 minutes later the surgeon came out to us and told us everything went perfectly and as planned.

We were brought back to Malachi about 20 minutes after seeing the surgeon. He was inhaling apple juice with the nurse holding him. I got to hold him immediately. He was REALLY out of it. Malachi had pulled out his IV right after coming out of general anesthesia so they had to put another one (in his foot). He was very bothered by the IV. So much so he wasn’t really bothered by the large bandage/covering on his head and ear. They had given him morphine for pain and it made him sick to his stomach. He threw up everywhere (including on me!). It was a little nerve racking because part of what he threw up was old clotted blood. This is normal though because your ear/nose/throat are all connected and it’s normal for that to drain after surgery.

He was pretty cranky and would drift in and out of sleep. After about 2 hours Malachi was stable and he hadn’t thrown up again so we got his prescription and checked out. Malachi was still pretty out of it at this point. Driving out of Charleston (down town) the roads are pretty bumpy. Every time we went over a bump Malachi would cry. Then he just threw up. Everywhere, again. The throw up looked the same at the first time and I was a little nervous that something else was wrong. They told us it was okay if he threw up a few more times so we cleaned up and went on our way. Malachi slept most of the way home. Brian had to be careful to not hit pot holes or large bumps because Malachi would cry. 

Malachi hasn't fussed over the bandage that much. It annoys him, but hopefully he can deal with it for a little while longer. The doctors said that he needed to leave it on for 24 hours minimum. I'm going to push it for as long as I can. 

So far Malachi seems to be returning to normal pretty quickly. From what I understand he should be feeling like his old self tomorrow. 

Introducing Us

We are your everyday, normal family. Oh yeah, except for one thing.....our littlest boy Malachi is bilaterally profoundly deaf. This coming Wednesday he will be getting his first cochlear implant. October 12th, 2011 will be his second surgery.

For this reason I have created this blog. After we found out that Malachi was deaf we started researching for any kind of help or support. There isn't a deaf community in our little town in South Carolina and the nearest deaf school was over 3 hours away. I figured there must be people like us (hearing parents with a profoundly deaf child who wanted to do CIs and learn ASL). I have had the hardest time find someone with our similar story. All I wanted was someone to relate to and to ask questions. Luckily, I was introduced to a friend's brother who had a friend in North Carolina. She is hearing and has a daughter who is fluent in ASL and also has cochlear implants. I have already found comfort in her words and answers to my questions.

However, I felt very strongly that I needed to chronicle our journey with Malachi. Write about our struggles, our choices, and of course the joy. I hope I can help someone else by offering up a look into our lives.

First there's the Daddy. Brian is a Spanish teacher, a cross country coach and works several other small part time jobs to keep us going. He has a special gift for languages and is already getting pretty good at ASL He loves his little boys and would do anything for them. He is supportive and the best husband I could ever ask for.

Then there's me, the Mommy. I'm Kandra. I am a stay at home mom and my life revolves around my boys. I co-coach cross country will Brian on the side as well.

Brandon is our oldest boy and right now he is three years old. He is a great big brother. He is loaded with energy. He is going going all day long. He doesn't really understand that Malachi is deaf.

Malachi is our sweet boy. He is super squish-able. Strangers stop us at grocery stores, restaurants, and at the park just to tell us how beautiful he is. He has yet to meet a person he won't smile at. He is an extremely content and happy person. And as you read earlier, he is bilaterally profoundly deaf. (Oh, yes and he is currently 14 months).

Make sure to subscribe to the blog so that you can follow along in our grand adventure!