Learning Your Name

(Malachi reading and signing a book) 

"Does he turn when you call his name?"

I remember being asked that when Malachi was 9 months and almost every doctors appointment since. When Brandon was growing up that never even occurred to me. Hearing children hear people calling them their name from the moment they are born.

Malachi didn't start hearing his name until a month or two ago.

Then I started thinking. How in the heck was I going to teach Malachi that his name was Malachi?

Before Malachi was implanted we would hit the floor with our hands twice, and that was his signal to look to see who was trying to get his attention. So once he was hearing our voices I started to call out "Malachi" and also hit the floor twice. Eventually, it started to seem like he was starting to turn to his name.

For about the last week Malachi has been consistently turning to his name being called.

Something that seemed like it was going to be so complicated wasn't at all. It just proved to me again that deaf children learn just the same as hearing children, just in a different way and different time frame.

A Miracle

We had a very interesting and special experience yesterday (November 5th, 2011). This post isn't necessarily for everyone as it is mostly to just have record of the event. I talk about my believes as a member of The Church of Jesus Christ of Latter-Day Saints. If you want to know more about my church click here.

Brian and I are cross country coaches. Yesterday was the State meet in Columbia, SC. We took the boys with us because we didn't have a babysitter for them overnight (this is definitely the last year we're doing that!). Malachi wore his processor the whole time, even with a beanie with ear flaps. If he wears a size bigger in hats (aka, Brandon's size) then the processor doesn't get pulled off.

After the awards ceremony we high-tailed it for our vehicles. There is always a huge line trying to get out because hundreds of cars and lots of buses all try to pull out of a field parking lot to a single lane road with a stop sign exit. Brian drives the bus with the team on it and I was in a rental van with the boys. When I got to the van I was just trying to get the boys and our stuff in as fast as possible. As I took Malachi's beanie off his processor fell off. I remember thinking to myself, "as soon as I get him buckled in I'm going to grab it."

As I pulled into a restaurant parking lot 10 minutes later (feeding the team lunch before we headed back home) I remembered about the processor. I couldn't remember putting it back on Malachi. I jumped out and  started digging around the van hoping to find it. It wasn't there. I called Brian and started yelling that I had left the processor in the field! I felt like hyperventilating. I literally felt crazy, insane, and stupid. WHAT DID I JUST DO?

These pictures are from google maps. This first one is looking to the left of the field we parked in:

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This is looking to the right of the field:

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This last one is the aerial view. Zoom in and compare the field to the cars on Clemson Rd. You can really get a feel for how big this field is.

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It seemed nearly impossible. How in the heck were we supposed to find Malachi's processor in that huge field? Even if we were to find it, it should be broken from being (a) run over by me, (b) Mr. Brown one of our chaperons who was parked and drove right behind me, and (c) because everyone was cutting through the field run over by someone else!

I was just so mad at myself. I was calling myself stupid, moron, idiotic, lazy, pathetic. We just can't afford the $8,000 to replace the processor. Brian drove with me back to the field. Interestingly enough he was rather calm and just told me we needed to start praying. I prayed the whole way to the field.

It's a good thing the Lord has blessed me with good navigational skills because I was able to get us pretty close to wear I had parked from the way the grass was matted down on the field to tell where the aisles were, the surrounding  fences and buildings, and a single truck still parked in the same line I had been. After searching for about 5 minutes I was loosing hope. I thought there was no way we could find it. I decided to move down a little farther to a spot I really thought was too far away from where I thought we'd parked. I prayed a small prayer again. Then I thought, "You are stupid. There is no way Heavenly Father is going to help you. This was YOUR stupid mistake, not an accident. Why would He help you? YOU ARE NOT GOOD ENOUGH."

Then I looked down. AND THERE IT WAS. I gasped and said, "Oh. My. Gosh." I picked it up. It was still on and completely intact. Not a scratch on it. I could not believe it. Tears started running down my face.
I instantly felt that the Lord was trying to tell me something. That my faith is good enough. That he does love me and care for me. I struggle with feelings of inadequacy and self-doubt regularly. It's just one of my personal demons. I learned that day that my Heavenly Father still loves me anyways.

Brian asked to give me a hug but all I wanted to do was get into the van and cry. (I didn't however, because that would have really freaked out the boys). We checked the processor with the remote assistant to make sure everything was good and put it right back on Malachi.

We experienced a miracle.

A Little Tune Up

Today I drove Malachi (Brian didn't come) down to MUSC to see the audiologist to reprogram Malachi's left processor.

Driving 2.5 hours there and then 2.5 hours back with a 16 month old, by yourself, is a form of torture.

We started off with a booth test to see how he was doing with the current programming. He only cooperated for about 5 minutes. At that point she figured he was hearing around 50 decibels. It's hard to tell with Malachi because he only responds the first time he hears a sound. And if he responds, it's usually quick and discreet...a quick look up or to the left. Sometimes he just stops and stares. We never know!

After that we headed to the office where we hooked up his processor to the computer and reprogrammed it. The process of programming is very similar to a audio booth test. She adjusts the processor and we either clap, say words or sounds or she sends a series of beeps to the processor for Malachi to hear. Then we wait for a response from him. So, we had the same frustrations during the programming as we did the test.

We got to the point where the audiologist had a good idea of where Malachi was hearing so she turned up his processor. He handled the adjustment really well so we went ahead with that and an extra program to switch to after a week.

Next, to make sure that the new program was working we popped back into the booth to check his hearing. He was even LESS cooperative this time around, if that's even possible. In order for the booth audio tests to work we have to condition Malachi to look to the sounds that he hears. If he looks correctly then a flashing light/Goofy toy is lit up in the corner. It just so happens that Malachi is not impressed by this method. He does not think the toy is interesting. Not to mention he is very curious and quickly gets bored sitting in there in a chair. That brings up the problem up of simply paying attention to the sounds. We somehow need to teach him to want to listen to those sounds and SHOW us that he hears them. I'm thinking a treat of some sort may be needed next time. Like fruit snacks or Dots candy. If anyone has any brilliant ideas, let us know!

His next appointment is in two weeks, November 9th. That's the day we'll be activating his right ear and then we'll also be reprogramming his left ear. We are very excited :)

Right CI Surgery and More

Yesterday Malachi had his right ear implanted with the Cochlear Freedom internal cochlear implant. It is a different internal implant than the one in his left ear (Nucleus 5).

He also had tubes placed in both ears because he has continuously had ear infections (9-10) since January of this year.

We went through the same process as before, with his left ear implant. We checked in at 6 am and started pre-op quickly. Something happened with our doctor and we were delayed about 20 minutes. There were several things I wanted to address this time around:

-Malachi had a stitch on his left ear incision pop through and it wasn't dissolving. I asked that they cut it down so it wouldn't rub on his processor and get infected or agitated.
-I wanted to make sure that they knew Malachi would wake up angry and would try to rip out his IV. I asked that they give him something to calm down initially.
-I asked that they pump his stomach to help with the nausea from the surgery and morphine.

This experience was a bit different in the sense that I felt a lot more confident at the hospital. I knew what the procedures were. What nurses and doctors would be visiting and talking to us, etc. I felt much more calm knowing what to expect.

Malachi was pretty content and happy on his way to the OR. We had stepped aside and as the nurse was rolling him out she would clap and he would clap back. It was cute to watch him flirt and show so much love to someone else.

After about 2.5 hours of surgery Malachi was finally all done. He received tubes in both ears, and a cochlear implant in his right ear. The ENT told us that his ears were a bit inflamed so they were already starting to get infected after 3 days off of antibiotics! The implant went in great as well as the tubes.

The main difference between the left ear surgery and this right ear surgery is that in the left ear they were able to cauterize thoroughly. Malachi had virtually zero drainage. This time it's different. Because Malachi now has metal in his body (the left cochlear implant) they were not able to use the same tools for cauterizing. The resident told me there would be more oozing and drainage than before. Well there wasn't any before so I was thinking a little bit of liquid. It's been quite the opposite. The drainage is dark pink colored. Mixed blood and the sterile liquid they use to irrigate the inner ear. I had to change the gauze after about 20 hours because the gauze was just saturated and if Malachi leaned against anything he got it wet.

When I first changed it I didn't look in his ear canal, just the incision behind his ear. The incision looks great! It's swollen, but otherwise looks awesome. After several hours later I realized Malachi's gauze was soaked again. This time when I changed it I looked into his ear canal. It's completely filled with liquid and slowly dripping out. It is very disconcerting to see bloody liquid drain out of your child's ear.

I called the on-call pediatric ENT at MUSC and after explaining the situation to her she believes the drainage is well within the normal standards at this point. She was able to give me more specific guidelines for the drainage so I am feeling much better about it.

Hopefully I'll be able to post some pictures soon....when his ear stops dripping!

Cochlear Processor Equipment

Alright. After Malachi was activated, our audiologist gave us this monster of a case:

It's huge people. The picture just doesn't do it justice. I thought I would explain all of the "equipment stuff" that came with Malachi's Nucleus 5 processor because I honestly had no idea what to expect, and my mind was kind of blown by everything you need!

The "extra pieces" are the coils, ear hooks, wires, and magnets that are small pieces and tend to get the most use and are lost most often. We also have different sizes of ear hooks to grow with him as his ear get bigger.  The white cases are the original cases the processor, coil, remote assistant came in. We have euro adapters for the remote assistant and rechargeable batteries in the event that we travel outside the US. 

The "Cedis" white box is full of drying packets for the traveling case. I actually forgot to get a picture of the traveling case. I'll explain what they are for later. I have a headset (ear buds) that I can plug into the processor to make sure the microphones are working properly. We are only using rechargeable batteries right now, but we do have extra zinc air batteries. You use two per processor. They are like super hearing aid batteries. The audiologist told us if we used regular hearing aid batteries they would only last about an hour. Last is the pocket to hold all the accessories and batteries.

These are all the manuals for the remote assistant and processor.

Now the fun stuff. These are all the little accessories. The blue covers are kind of fun. We have two of them because cochlear gives you two processors per ear in case one fails, you then have a back up. Below those is the processor with the snug fit piece and coil/magnet attached to it. The coil is what connects to the internal implant and turns it on. The processor has the microphones on top and takes in the sound and processes the sound into electrodes to be sent through the wire, into the coil and then into the implant inside Malachi's ear. The snug fit piece helps keep the processor on Malachi's ear when he is rolling around. It's also helpful for older kids that are running around and/or playing sports. There are three types of batteries. The regular rechargeable, the compact rechargeable (that is what we currently have on Malachi because it's smaller and not as heavy), and the zinc air batteries with cover. I haven't completely mastered the remote assistant, but it's nice to be able to check the status of Malachi's processor without taking it off his ear. It kind of looks like a iPod lol. The tool is a little pick that I use to turn small dials and nobs on the processor to lock the the batteries into place so he can't take it apart.

Finally, on the left is the rechargeable battery device. I can also plug the remote assistant into this to charge. Oh and did I mention that the remote assistant charging cable is a USB? Yes, I can charge it and plug it into my computer. Crazy. The Zephyr is a dehydrator of sorts. Inside is a packet of special chemicals. It plugs in and at night I put the processor inside and turn it on. It removes any moister build up. It lengthens the life of the processor by doing this. 

Cochlear actually forgot to send Malachi's back up processor, but luckily we haven't needed it! They expedited it to the audiologist next day, but then she has been gone for two weeks because she got married! 

It's quite the crazy set up and from what I understand, we'll be getting the same stuff for the right ear. Also of note: This is what the case looks like after I thoroughly dejunked it and threw out all the extra boxes and papers that we not necessary. 

If you have any questions, let me know and I will write a post answering anything I missed :)

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. :)