When Emmeline was super little and in the ICU we had the best room. It was right across from the nurses station so they could never forget about us. Every time they sat down they would look up and see us and feel compelled to make sure there wasn't anything we needed.
This room also gave me a great view of the info board for all the patients on the floor. Don't worry, no one's privacy was violated. It only had first and last initial, who their nurse was, who their Dr was, and their room #. At the very end there was a small box. In every patients box was drawn a small heart. Every box except Emmeline's. I finally asked our nurse what it meant. Emmeline was the only patient in the ICU ( and it was fairly full) that wasn't a heart patient. At the time I thought how lucky we were that her heart had been checked out and we didn't have anything to worry about. Yeah...
I should have known better. I guess it's our turn now. Now that little drawn heart will be us. It's amazing now significant a little drawing can be. Hopefully it will be our only time with that on our board...Maybe I shouldn't have said that....
2013/05/14
2013/05/11
The Big Lie
After watching the second to last episode of The Office I can no longer remain silent. Pam and Jim have one of the worst relationships I have seen on TV in quite some time. At first it seemed sweet enough. Boy likes girl, girl is with someone else, boy loves her from afar, boy eventually gets girl.
I will admit as guilty as I felt, I wanted Jim to make a move. But then not so much. Sure Roy was a jerk compared to Jim, but does that somehow negate that Jim caused Pam to cheat on her fiance? Why wasn't this a bigger deal!? Sure Roy tried to unsuccessfully punch Jim later (which he deserved) but it still didn't feel like enough. But that is not my big issue.
My problem with Pam and Jim is how one sided their relationship is. Jim makes all the sacrifices for their family. He always supports Pam in her every whim. He tells her he backs her no matter what. To follow her dreams, even if it isn't what he wants. He lets her decide without biasing her with his pouting. What did Pam do when Jim wanted to follow his big dream? Sorry honey, but no. Who cares if you could make our family way more money and do something you love! I'll string you along for a while so you can get really attached to your dream and then cut you off. Aren't I sweet? How does Jim respond to this? Shocked at first but then caves. Pam, you're a B#$%^.
There are only 2 big things I think Jim ever did that maybe would have scored him some selfish points. One, buying a house without telling Pam. I'm not sure this one even counted. I would LOVE it if a guy bought me a house. Plus they weren't even married or anything so...it was Jim's money to do with as he pleased. Suck it Pam.
The other which is rather large, was taking the Job in Philadelphia. As previously stated, this job made them more money AND was something Jim loved. But Pam wouldn't give up her apparently great job as office administrator so Jim could live his dream for while.
This gives such a TERRIBLE example of a healthy relationship!! Why does the guy have to so all the work? In the latest episode Pam was afraid Jim would resent her if he didn't follow his dream. I thought "Yay, now they'll be real, and Pam will have support Jim". Boy was I wrong. What was the show's answer? "No Pam, I love you so I'll never resent you". Yeah freaking right!!! Yes, he will resent you and probably your children too because YOU ARE SELFISH!!!! It takes give from both parties to maintain a healthy relationship!!! Why does TV do this?! I blame The Office for high divorce rates. Even if Pam caves next week and they do move away for Jim to FINALLY get to do a job he can excel at and enjoy, it's a little too late. I will forever feel sorry for Jim that he happened to fall in love with such a selfish woman. Suck it up Pam, your not that amazing, you shouldn't push your luck.
Oh, I remembered ONE time Pam didn't get her way right away. One Halloween Jim refused to dress up like Popeye. It bothered me that Pam even asked because it was obvious to everyone that Jim didn't like to dress up. What ends up happening? Jim caves and dress up anyway.
I would even argue that Dwight and Angela had a more realistic relationship. Doesn't this sound a little more normal compared to the Utopia of Pam and Jim?
1) Booty calls
2) Cat euthanization
3) Raising a child that isn't his
4) Being with the wrong person at the wrong time
5) Finally almost wrecking as he proposes marriage
My vote is for Dwight and Angela for the long hall.
I will admit as guilty as I felt, I wanted Jim to make a move. But then not so much. Sure Roy was a jerk compared to Jim, but does that somehow negate that Jim caused Pam to cheat on her fiance? Why wasn't this a bigger deal!? Sure Roy tried to unsuccessfully punch Jim later (which he deserved) but it still didn't feel like enough. But that is not my big issue.
My problem with Pam and Jim is how one sided their relationship is. Jim makes all the sacrifices for their family. He always supports Pam in her every whim. He tells her he backs her no matter what. To follow her dreams, even if it isn't what he wants. He lets her decide without biasing her with his pouting. What did Pam do when Jim wanted to follow his big dream? Sorry honey, but no. Who cares if you could make our family way more money and do something you love! I'll string you along for a while so you can get really attached to your dream and then cut you off. Aren't I sweet? How does Jim respond to this? Shocked at first but then caves. Pam, you're a B#$%^.
There are only 2 big things I think Jim ever did that maybe would have scored him some selfish points. One, buying a house without telling Pam. I'm not sure this one even counted. I would LOVE it if a guy bought me a house. Plus they weren't even married or anything so...it was Jim's money to do with as he pleased. Suck it Pam.
The other which is rather large, was taking the Job in Philadelphia. As previously stated, this job made them more money AND was something Jim loved. But Pam wouldn't give up her apparently great job as office administrator so Jim could live his dream for while.
This gives such a TERRIBLE example of a healthy relationship!! Why does the guy have to so all the work? In the latest episode Pam was afraid Jim would resent her if he didn't follow his dream. I thought "Yay, now they'll be real, and Pam will have support Jim". Boy was I wrong. What was the show's answer? "No Pam, I love you so I'll never resent you". Yeah freaking right!!! Yes, he will resent you and probably your children too because YOU ARE SELFISH!!!! It takes give from both parties to maintain a healthy relationship!!! Why does TV do this?! I blame The Office for high divorce rates. Even if Pam caves next week and they do move away for Jim to FINALLY get to do a job he can excel at and enjoy, it's a little too late. I will forever feel sorry for Jim that he happened to fall in love with such a selfish woman. Suck it up Pam, your not that amazing, you shouldn't push your luck.
Oh, I remembered ONE time Pam didn't get her way right away. One Halloween Jim refused to dress up like Popeye. It bothered me that Pam even asked because it was obvious to everyone that Jim didn't like to dress up. What ends up happening? Jim caves and dress up anyway.
I would even argue that Dwight and Angela had a more realistic relationship. Doesn't this sound a little more normal compared to the Utopia of Pam and Jim?
1) Booty calls
2) Cat euthanization
3) Raising a child that isn't his
4) Being with the wrong person at the wrong time
5) Finally almost wrecking as he proposes marriage
My vote is for Dwight and Angela for the long hall.
2013/05/10
The Awkward Talk
I thought about doing it over email. Honestly I would probably prefer 70% of my human interactions actually took place in writing instead. Less messy. Talking requires too much interaction. You have to make eye contact, and nod. Plus I don't get do overs on the faces I make that are all too telling about what I'm actually thinking. Emails and txts are safer for everyone.
Since I probably wouldn't be at church on Sunday and people were already making announcements about medical stuff with several families in the ward (congregation) I decided our mid week woman's activity was a good time to let people know that we just found out that Emmeline's heart surgery is scheduled for this coming Wednesday. As in 6 days from now. I hadn't really said it out loud to anyone other than Josh which I didn't realize until I teared up. Saying out loud that your child is having heart surgery is kind of like hitting yourself in the face with a brick. In the back of your mind your thinking you're tough, and let's be honest this my first go round, but then it hurts.
I learned tonight that not even a room full of women know what to do when someone just starts crying. You still get those "Oh crap" looks as all eyes are suddenly averted to the floor. Then one brave soul tries to dissipate the situation by asking practical questions to try and distract everyone.
I didn't know the answer. As I sat there I realized that I had no idea what exactly would be happening to my little Dumple. For a moment I got angry. Why hadn't anyone told me!?
Oh, yeah. I don't want to know. This is one procedure I would rather be told about afterward. I just have no desire to know what they will be doing to her little body. It makes my soul hurt to even consider the possibility that they might stop her tiny heart that works so hard. Even for a moment. A deep, deep hurt that I can't adequately describe.
Anyway...of course people came up to me afterward to see what I needed. They meant well. It was sweet and I am honestly glad they tried. Seriously. I just don't know how to get help. People offer and I just don't know what to say. I smile and thank them for the thought. I know I probably wont call. I'm trying to be better about it. Here's the problem: I need to do it. I don't know why or what exactly I think it proves but I can't walk away. Maybe it's fear that if I had to do it alone I am admitting I couldn't? I don't know. Often times the act of figuring out what in my life someone else could substitute for me is more difficult then just doing it myself. I have often said, when people say I'm a great mom that the only difference between me and the bad moms is that I can't walk away. I guess that's the line. Crossing it would just lead to a different awkward talk and we all know how well I do awkward.
Since I probably wouldn't be at church on Sunday and people were already making announcements about medical stuff with several families in the ward (congregation) I decided our mid week woman's activity was a good time to let people know that we just found out that Emmeline's heart surgery is scheduled for this coming Wednesday. As in 6 days from now. I hadn't really said it out loud to anyone other than Josh which I didn't realize until I teared up. Saying out loud that your child is having heart surgery is kind of like hitting yourself in the face with a brick. In the back of your mind your thinking you're tough, and let's be honest this my first go round, but then it hurts.
I learned tonight that not even a room full of women know what to do when someone just starts crying. You still get those "Oh crap" looks as all eyes are suddenly averted to the floor. Then one brave soul tries to dissipate the situation by asking practical questions to try and distract everyone.
I didn't know the answer. As I sat there I realized that I had no idea what exactly would be happening to my little Dumple. For a moment I got angry. Why hadn't anyone told me!?
Oh, yeah. I don't want to know. This is one procedure I would rather be told about afterward. I just have no desire to know what they will be doing to her little body. It makes my soul hurt to even consider the possibility that they might stop her tiny heart that works so hard. Even for a moment. A deep, deep hurt that I can't adequately describe.
Anyway...of course people came up to me afterward to see what I needed. They meant well. It was sweet and I am honestly glad they tried. Seriously. I just don't know how to get help. People offer and I just don't know what to say. I smile and thank them for the thought. I know I probably wont call. I'm trying to be better about it. Here's the problem: I need to do it. I don't know why or what exactly I think it proves but I can't walk away. Maybe it's fear that if I had to do it alone I am admitting I couldn't? I don't know. Often times the act of figuring out what in my life someone else could substitute for me is more difficult then just doing it myself. I have often said, when people say I'm a great mom that the only difference between me and the bad moms is that I can't walk away. I guess that's the line. Crossing it would just lead to a different awkward talk and we all know how well I do awkward.
2013/05/07
I Can't Believe You'd Leave A Girl Hanging!
Whenever I feel bored or just need something to keep my brain busy I hit the handy little "Next Blog" button in the left hand corner of my blog. Off I go into some random blog. Sometimes they are good. Mostly it's some Mommy Blogger who wants to tell everyone how she just had an epiphany about how she "doesn't have to do it all" or "how she made 50 freezer crock pot meals and you can too!" Neither of which I am really into. There are also a HUGE amount of blogs that never get updated. If you haven't updated in over 1.5 years then just throw in the towel. Shut it down!
The ones I really like are the ones that are honest. That blog about their crappy day or the person that really got on their nerves and made them never want to leave the house again. No, my blog isn't the only one like that out there.
I do have to admit that the medical ones are my favorite. I like popping in and looking back several years so I can see all the progress in just a few minutes. It's like those youtube videos that show a kid growing up really fast. I think it ultimately stems from the fact that I don't like to wait. I hate watching new tv shows, waiting for phone calls, having appointments, pretty much anything that requires me to wait for something to happen.
The problem are those blogs that peak my interest and then don't follow through. I devour their posts getting all engrossed in the story, excited to find out what happens next. That's when I see it. They haven't updated in years. It's like writing half a book, publishing it and then saying "oh, never mind, I'm bored with this". Rude.
I found just one such blog written by a Doctor no less. He treated Alzheimer's patients. It was a very intriguing and heart wrenching blog. Whether said doctor became too busy or decided it infringed on his patient's rights I don't know. Mostly because he didn't say. But either way he should said something, anything. All it does is peak people's interest and then not follow through.
Shut it down! It's not even really that hard. I mean seriously, you're a doctor!
The ones I really like are the ones that are honest. That blog about their crappy day or the person that really got on their nerves and made them never want to leave the house again. No, my blog isn't the only one like that out there.
I do have to admit that the medical ones are my favorite. I like popping in and looking back several years so I can see all the progress in just a few minutes. It's like those youtube videos that show a kid growing up really fast. I think it ultimately stems from the fact that I don't like to wait. I hate watching new tv shows, waiting for phone calls, having appointments, pretty much anything that requires me to wait for something to happen.
The problem are those blogs that peak my interest and then don't follow through. I devour their posts getting all engrossed in the story, excited to find out what happens next. That's when I see it. They haven't updated in years. It's like writing half a book, publishing it and then saying "oh, never mind, I'm bored with this". Rude.
I found just one such blog written by a Doctor no less. He treated Alzheimer's patients. It was a very intriguing and heart wrenching blog. Whether said doctor became too busy or decided it infringed on his patient's rights I don't know. Mostly because he didn't say. But either way he should said something, anything. All it does is peak people's interest and then not follow through.
Shut it down! It's not even really that hard. I mean seriously, you're a doctor!
2013/05/06
The Year Of Hole Closures
Most of my time is spent on the phone with receptionists. If I am lucky enough to get through what I refer to as "the door guard", I then get to talk to the Nurse. Who then relays whatever she deems necessary to the actual Doctor. If they think my question is worth answering then they will relay the reply back through our adult game of telephone to me. Part of me understand why they do this and the other part HATES it. I inevitably have another question about whatever the doctor's response was which just starts things all over again. I spend whatever part of my time that isn't on the phone waiting for my phone to ring. The part I hate the most is when the clock hits about 4:45 and I know I will now have to hope they remember my question in the morning and start our game all over again.
I can count on one hand the number of times an actual Doctor called me and only one other time it has been after 5pm.
I have been playing "telephone" all day with several Doctor offices in regards to Emmeline's cochlear implant none of which were wrapped up before they closed shop. So you can imagine my surprise when my phone rang at 5:05pm and when I picked up an actual Doctor was on the other line. It wasn't just a regular Doctor either, it was a Surgeon! It took me a few second to recover. It wasn't about Emmeline's CI.
What was it about you ask? After 3 years of back and forth we are finally getting Emmeline's ASD repaired!!! I am SUPER excited about it! Not only does this mean my daughter wont be walking around with a hole in her heart, but they will be able to close it with a catheter via her femoral artery! Sorry I know that's a lot of exclamation points. I am just glad to be wrapping it up. This will hopefully have a positive impact on her CI "issues" we are having right now but I'll go into that in a post of two.
YAY!!! No more hole!!!! Being myself I feel like I should point out that she will still have her other defect (bicuspid aortic valve) but it shouldn't impact her for several decades and is treatable at that time.
I can count on one hand the number of times an actual Doctor called me and only one other time it has been after 5pm.
I have been playing "telephone" all day with several Doctor offices in regards to Emmeline's cochlear implant none of which were wrapped up before they closed shop. So you can imagine my surprise when my phone rang at 5:05pm and when I picked up an actual Doctor was on the other line. It wasn't just a regular Doctor either, it was a Surgeon! It took me a few second to recover. It wasn't about Emmeline's CI.
What was it about you ask? After 3 years of back and forth we are finally getting Emmeline's ASD repaired!!! I am SUPER excited about it! Not only does this mean my daughter wont be walking around with a hole in her heart, but they will be able to close it with a catheter via her femoral artery! Sorry I know that's a lot of exclamation points. I am just glad to be wrapping it up. This will hopefully have a positive impact on her CI "issues" we are having right now but I'll go into that in a post of two.
YAY!!! No more hole!!!! Being myself I feel like I should point out that she will still have her other defect (bicuspid aortic valve) but it shouldn't impact her for several decades and is treatable at that time.
2013/04/20
Race Etiquette, It Exists!
I hate racing. It combines my two least favorite things. Appointments and stupid people. I get super anxious knowing that I have to be somewhere at a specific time. Super anxious. I'll leave it at that. Let's brake it down shall we?
1) Parking: There is never enough local parking for a race. Never. Race officials will usually tell you if and where nearby businesses are that will allow parking. This does NOT mean that the roads become sidewalks for racers to walk on to get to the race. Have some self preservation and move the the side! I will nick you.
2) Line up: This kills me. Please read carefully. When the announcer says runners toward the front, walkers toward the back here is what you should do. If are going to RUN the WHOLE thing go the front. If you are going to run the first 100-400 yards and then stop dead the middle of the trail and walk. MOVE TOWARD THE BACK!!!!! It is VERY dangerous for everyone for you to stop and walk in front of people who are running. Other runners can't read your mind and that is how crashes happen. Also, I don't care how fast your kid thinks they are. If the haven't run several 5Ks before and you know they can do it, make them start in the back. I will run them over.
3) Stay to the right!: It's not hard. Left is for passing right is for cruising. Just like on interstate. If i wanted to bob and weave I would have taken up boxing. Maybe I should try box running and see if people stay out of my way then. I think I could start a real craze. This especially holds true for those runner who are really walkers. Did you not realize this race had more people then just you? NO ONE and I repeat NO ONE should EVER EVER be running down the middle! There is no reason to do this.
4) Appropriate Music: Once again I assume you know this is an actual race with other people in it. Some of those people are children. Please, if you are going to listen to music so loud other runners can hear it, make sure it is appropriate for those in hear shot. I would rather my daughter not here about adult themed subjects while trying to get some exercise. On that note, if you are going to listen to music via headphones you need to make sure you can still hear what is going on around you. While you're rocking out you are running everyone else off the road.
5) Water stops: DO NOT walk through a water stop. Some of us don't use the water stop so this isn't our break time. I get that you are thirsty and tired but this isn't a rest stop! If you want to stop then get your cup and step off the side of the trail. Not everyone stops here.
6) After the finish line: I know you just ran/walked your little heart out but please, please do not cross the finish line and immediately stop. You aren't done until you clear the finishing area. Once again a great way to get trampled.
7) Walking to your car: This one should be obvious but, cars are bigger than you. Stay out of the way. I don't care how tired you are. Look before you cross and STAY TO THE RIGHT!!!!
Thank you.
1) Parking: There is never enough local parking for a race. Never. Race officials will usually tell you if and where nearby businesses are that will allow parking. This does NOT mean that the roads become sidewalks for racers to walk on to get to the race. Have some self preservation and move the the side! I will nick you.
2) Line up: This kills me. Please read carefully. When the announcer says runners toward the front, walkers toward the back here is what you should do. If are going to RUN the WHOLE thing go the front. If you are going to run the first 100-400 yards and then stop dead the middle of the trail and walk. MOVE TOWARD THE BACK!!!!! It is VERY dangerous for everyone for you to stop and walk in front of people who are running. Other runners can't read your mind and that is how crashes happen. Also, I don't care how fast your kid thinks they are. If the haven't run several 5Ks before and you know they can do it, make them start in the back. I will run them over.
3) Stay to the right!: It's not hard. Left is for passing right is for cruising. Just like on interstate. If i wanted to bob and weave I would have taken up boxing. Maybe I should try box running and see if people stay out of my way then. I think I could start a real craze. This especially holds true for those runner who are really walkers. Did you not realize this race had more people then just you? NO ONE and I repeat NO ONE should EVER EVER be running down the middle! There is no reason to do this.
4) Appropriate Music: Once again I assume you know this is an actual race with other people in it. Some of those people are children. Please, if you are going to listen to music so loud other runners can hear it, make sure it is appropriate for those in hear shot. I would rather my daughter not here about adult themed subjects while trying to get some exercise. On that note, if you are going to listen to music via headphones you need to make sure you can still hear what is going on around you. While you're rocking out you are running everyone else off the road.
5) Water stops: DO NOT walk through a water stop. Some of us don't use the water stop so this isn't our break time. I get that you are thirsty and tired but this isn't a rest stop! If you want to stop then get your cup and step off the side of the trail. Not everyone stops here.
6) After the finish line: I know you just ran/walked your little heart out but please, please do not cross the finish line and immediately stop. You aren't done until you clear the finishing area. Once again a great way to get trampled.
7) Walking to your car: This one should be obvious but, cars are bigger than you. Stay out of the way. I don't care how tired you are. Look before you cross and STAY TO THE RIGHT!!!!
Thank you.
2013/04/18
CI-BORG
As I said in my last post Emmeline has a new medical adventure for us. A few posts ago I talked about how Emmeline is now diagnosed profoundly deaf in her left ear. Deaf. Deaf. I wonder if I keep saying it it will stop making my stomach tighten up? Deaf. Nope apparently not.
We had to wait over a month between finding out she had lost her left ear hearing and getting a MRI and CT scan of her ears. Funny side note, the MRI tech told me they would take a few pictures of her brain while she was out as well just to "check" things. I for a real kick out of the report stating they didn't find anything out of the ordinary in her brain scan (like say, a stroke!). Anyway, Her ears are apparently the only thing she has that screams CHARGE syndrome. She has the classic lack of a vestibular (inner ear balance) system. She also has only mostly formed cochlea (the snail shell looking part). Most people have 2.5 solid swirls. Emmeline has as the ENT put it "2 and a squeak". There is also a very small vein in every one's ears that is about the size of a mechanical pencil lead. The surgeon said he saw one once that was the size of an eraser. Emmeline's is the size of this pointer finger. Also, she has no right jugular vein in her neck. So basically the vein in her ear is functioning like her right jugular. Weirdo.
So what we found out was, she is eligible for a cochlear implant. At first I thought, cool, she'll be able to hear. The next day I thought, wait, maybe this isn't right. The next day I thought, cool, she'll be able to hear. The next day...you get the idea.
Don't get me wrong the technology is AMAZING and way beyond anything I could ever dream up. But it's also scary. First off they would have to shave the implantation site. Silly I know but we have never cut her hair. Ever. I could just cut it before hand but I don't like the idea of doing it when someone else says I should. It's the "I'm in charge" in me. I'll get over it though. What choice do I have. "No thanks, I don't want my daughter to hear because I like her hair"?!
There are other risks that are totally out of our control so I'm trying to let go of those but they linger. I am SUPER not keen on the idea of someone peeling back my daughter's scalp and ear and putting some BORG in her. My very cool sister Katie says it will make her "different like a friggin super hero" and that sounds pretty awesome.
A big drawback for me is that even though she doesn't have much hearing in that ear right now, after the CI she probably wont have any so if it doesn't work then she will be dark on the left side forever. Not really a choice I want to make for her. The problem is if we wait for her to decide the benefit goes drastically down. Right now her auditory nerve has been stimulated to a normal hearing level since she was a baby. If we wait to put it in the brain will start to shut off the auditory nerve to that ear.
Either way we are in kind a time crunch since it will take at least a month to get insurance approval and then to actually get the surgery. Then another month before we can get "online" and then a year of intense rehab. Did I mention Josh getting ready for his dissertation performance? Yeah not the greatest timing since whenever I talk about something medical he gets this glazed look in his eye. I think his brain might be full. So that mean my least favorite thing. Waiting. I really need tons of mental support and "yes this is a good decision" to go through with this so I would rather wait a couple weeks and have that support then try and go this alone. I just wish Emmeline could tell me. She trusts me and I REALLY don't want to betray that trust.
We had to wait over a month between finding out she had lost her left ear hearing and getting a MRI and CT scan of her ears. Funny side note, the MRI tech told me they would take a few pictures of her brain while she was out as well just to "check" things. I for a real kick out of the report stating they didn't find anything out of the ordinary in her brain scan (like say, a stroke!). Anyway, Her ears are apparently the only thing she has that screams CHARGE syndrome. She has the classic lack of a vestibular (inner ear balance) system. She also has only mostly formed cochlea (the snail shell looking part). Most people have 2.5 solid swirls. Emmeline has as the ENT put it "2 and a squeak". There is also a very small vein in every one's ears that is about the size of a mechanical pencil lead. The surgeon said he saw one once that was the size of an eraser. Emmeline's is the size of this pointer finger. Also, she has no right jugular vein in her neck. So basically the vein in her ear is functioning like her right jugular. Weirdo.
So what we found out was, she is eligible for a cochlear implant. At first I thought, cool, she'll be able to hear. The next day I thought, wait, maybe this isn't right. The next day I thought, cool, she'll be able to hear. The next day...you get the idea.
Don't get me wrong the technology is AMAZING and way beyond anything I could ever dream up. But it's also scary. First off they would have to shave the implantation site. Silly I know but we have never cut her hair. Ever. I could just cut it before hand but I don't like the idea of doing it when someone else says I should. It's the "I'm in charge" in me. I'll get over it though. What choice do I have. "No thanks, I don't want my daughter to hear because I like her hair"?!
There are other risks that are totally out of our control so I'm trying to let go of those but they linger. I am SUPER not keen on the idea of someone peeling back my daughter's scalp and ear and putting some BORG in her. My very cool sister Katie says it will make her "different like a friggin super hero" and that sounds pretty awesome.
A big drawback for me is that even though she doesn't have much hearing in that ear right now, after the CI she probably wont have any so if it doesn't work then she will be dark on the left side forever. Not really a choice I want to make for her. The problem is if we wait for her to decide the benefit goes drastically down. Right now her auditory nerve has been stimulated to a normal hearing level since she was a baby. If we wait to put it in the brain will start to shut off the auditory nerve to that ear.
Either way we are in kind a time crunch since it will take at least a month to get insurance approval and then to actually get the surgery. Then another month before we can get "online" and then a year of intense rehab. Did I mention Josh getting ready for his dissertation performance? Yeah not the greatest timing since whenever I talk about something medical he gets this glazed look in his eye. I think his brain might be full. So that mean my least favorite thing. Waiting. I really need tons of mental support and "yes this is a good decision" to go through with this so I would rather wait a couple weeks and have that support then try and go this alone. I just wish Emmeline could tell me. She trusts me and I REALLY don't want to betray that trust.
The external part. It is help on via magnet under the scalp.
The part in her scalp. It sends signals via those little wires into her cochlea (snail shell) which then sends it to her brain
picture of where everything goes.
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