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.
Sunday, November 6, 2011
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 :)
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!
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!
Saturday, October 8, 2011
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 :)
Thursday, September 29, 2011
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!
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!
Friday, September 23, 2011
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. :)
Thursday, September 22, 2011
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....
(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....
Wednesday, September 21, 2011
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.
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.
Saturday, September 10, 2011
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
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
Friday, September 9, 2011
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.
Wednesday, September 7, 2011
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
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.
Monday, September 5, 2011
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!
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