Thursday, December 6, 2012

Malachi the conductor!

Malachi is learning to listen so well. 
Malachi is profoundly deaf but hears with bilateral cochlear implants. He LOVES music. Watch him enjoy and "lead" two ladies at our church play some music (violin and clarinet). It's so ironic that my child with no hearing loves music the most :)

Sunday, April 29, 2012

Music and Cochlear Implants

This video is about music and cochlear implants. I found it very interesting. That was one of the first things I thought of when I found out that Malachi was deaf, he wouldn't know music. To my surprise Malachi has actually shown a great love for music since his implantation. He can tell the difference between speech and a song. He absolutely LOVES "The Itsy Bitsy Spider" and he recognizes it even if I don't do the motions. At church his head pops up when he hears the piano or organ playing and instantly looks at the conductor. Even before he had his CIs I would "wave" his hand to the song's beat/rhythm so now he tries to do it on his own. We even have dance parties! Usually Malachi's favorites are Michael Jackson hits. :)

Saturday, March 10, 2012

Talking Malachi

Sorry I haven't updated in a while! I feel like I'm just barely keeping my head above water recently. I'm 13 weeks pregnant with number 3 and I'm not quite out of my morning sickness. Hopefully I can get into a regular posting schedule soon.

Here is a video of Malachi babbling from January.

He is now saying "mama" "bah bah" "wah wah" "iy iy iy" consistently. He is also understanding words much better. He always turns to his name when called. He understands "up" and "down" and where those "place" are. He is also signing somewhere around 14 signs. He also knows these by saying the words. I can say "shoes" or "fish" and he almost immediately looks for the object and/or signs it.


He is also saying his version of look(!). While pointing at something he says, "ouuuh-k". As time goes on he is making the "ouuuh" part shorter, probably just because of laziness lol.

Friday, January 6, 2012

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.

Sunday, November 6, 2011

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:

View Larger Map

This is looking to the right of the field:

View Larger Map

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.

View Larger Map

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.

Wednesday, October 26, 2011

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 :)

Thursday, October 13, 2011

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!