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!
2013/05/07
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.
2013/04/12
Insert Clever Title Here "Holy Hole Batman" Or The Like
It's over. Totally and completely over. I never thought I would get to this point but I did and it feels amazing. Our G-tube days are behind us. Before the doctor even put it in I wanted to know when we would be able to take it out. That darn tube and everything that went with it consumed my every thought for exactly 4 years and 5.5 months. The tube is gone, the stitches healed and the tape worn off. I am sure it will pop back into my mind ever once in awhile. Like when any child picks her up and then slides her down the length of their body to put her down, whenever she climbs over something, Whenever we toss her in the air, you know, all those times we had to call "tube check" and make sure it was still in place. Hopefully that will fade with time.
The day I took her in to have it closed was hard for me. I was dealing with all my normal surgery angst plus reliving that awful Halloween in 2008 when they put it in. My goal was to do a recreation before and after kind of thing. This caused me to have to think about my every move to try and remember when I took pictures before, so I could try and do the same shots now. All the nurses thought it was really cool but looked at my weird when I would look like I was going to puke after the picture. Give me a break! I'm dealing with something here!
Sadly I can't seem to find the most important picture to me. The very last one I took before they took her into surgery on that Halloween so long ago. Her last whole before the hole picture. It is a much tinier version on the one of her laying sideways on my lap. She fit was back then. So very small.
The day I took her in to have it closed was hard for me. I was dealing with all my normal surgery angst plus reliving that awful Halloween in 2008 when they put it in. My goal was to do a recreation before and after kind of thing. This caused me to have to think about my every move to try and remember when I took pictures before, so I could try and do the same shots now. All the nurses thought it was really cool but looked at my weird when I would look like I was going to puke after the picture. Give me a break! I'm dealing with something here!
Sadly I can't seem to find the most important picture to me. The very last one I took before they took her into surgery on that Halloween so long ago. Her last whole before the hole picture. It is a much tinier version on the one of her laying sideways on my lap. She fit was back then. So very small.
pre op second belly button
I put one of Emmeline's old G-tubes in her baby so I could show her what I was going to do when we took it out. While she was in surgery getting her tube sewed up I sat in the waiting area sewing up her baby.
She thought it was pretty cool to ride the rolling bed.
She woke up for a second and the promptly gave her some Lortab and she fell right back to sleep. For 4 hours.
2008 post surgery
2013 post surgery. I think it's pretty cute that she slept in almost the same position with her hand pulled up.
She woke up crying once and would only calm if I kept my hand on her head.
Then sleeping beauty awoke.
Well, sleeping something awoke.
Her post surgery dressing
No more stitches!
Awesome new abs!
This was going to be a much more well written post but my brain is shutting down due to our next big Emmeline adventure which is already starting up. She likes to keep it interesting/busy. So this is as good as it gets right now.
2013/03/21
You Bring Out The Worst In Me
I am a good driver. I have only had my car involved in 2 accidents my whole life and I wasn't even in the car for one of those. I am hardly ever in a situation where I almost get in an accident. This number has gone up drastically in the last four years. I only have one thing to say about that.
Texas, YOU SUCK!!
OK, OK. We all know I have WAY more than one thing to say about everything.
There I was driving back from the hospital. Again. We were at a new hospital today so I was being extra observant, about where I was and where I needed to go, when I came up to this interchange.
It's nasty with a bunch of lanes and levels going this way, that way and back around again. It can be easy to get in the wrong lane if you're not careful and sometimes that can land you several miles of back tracking by the time you find a place to get turned around. Needless to say, I made sure I was in the lane I needed. The lady to my left did not but thought she did.
Texas, YOU SUCK!!
OK, OK. We all know I have WAY more than one thing to say about everything.
There I was driving back from the hospital. Again. We were at a new hospital today so I was being extra observant, about where I was and where I needed to go, when I came up to this interchange.
It's nasty with a bunch of lanes and levels going this way, that way and back around again. It can be easy to get in the wrong lane if you're not careful and sometimes that can land you several miles of back tracking by the time you find a place to get turned around. Needless to say, I made sure I was in the lane I needed. The lady to my left did not but thought she did.
Here is a close up of the altercation in question. Let's pretend I'm the car with the red dot. Please take note that the arrows painted on the road and on a sign directly on the left side of the road say my lane and her lane can turn left. So, on the other side of those two bridges (just like that little white car) I proceeded to turn left, into my designated lane. She also turned left. Into my lane! Some yelling and gesturing ensued. I wont say by who.
Listen lady! (yes it was a woman) Just because you chose the lane that went back around doesn't mean you can wide turn! Your left turn only lane doesn't mean you get first bids on lanes once you turn! It means you have to take the closest lane! I bet you failed math. I have never come so close to getting out of my car and going a little Burke County all over you and your pissy passenger!! LEARN TO DRIVE!!!!!
I know she wont read this. I think that is what bothers me the most. She thinks I was wrong! Me! I don't ask for a lot in life. I just want stupid people to KNOW they are stupid. Is that really too much to ask?
2013/03/14
Always The Flower Girl, Never The Bridesmaid
This past weekend the girls were in a friend's wedding. Both of them. Did I mention Josh was a groomsmen? Well, he was. It was an "interesting" day. I'll just go ahead and say we will never agree for more then half the family to be in the same wedding again. Even if we love you. No, I should say, because we love you.
Isa was a pro as usual but Emmeline only liked how cute she looked standing up for 5 minutes at a time and then she was more interested in seeing how she looked upside down. I fixed her hair a lot.
Josh got a free pass on child care for the day since he had to be with the groom and all. Well, maybe not free. I'll cash that one in later.
To keep Emmeline busy we did some of her oral exercises in the mirror.
Sadly I got no pictures of them actually going down the isle because I somehow ended up being the child wrangler in the waiting area until the got through the door and then I couldn't exactly sneak in behind then :( Josh said they were adorable and did a great job.
The flower girls got to come sit down after walking down the isle which was good. Not good enough for Emmeline though. I think I got to see about 3 minutes of the ceremony and spent the rest of the time with this.
Awkwardly we ended up right outside the front door just at the Bride and Groom came out and would have had their 15 seconds of privacy before everyone else followed. So me.
Emmeline is more then a little obsessed with the Bride and Groom and she kept going up to them and wanting them to dance with her or hold her. It was cute at first.
The girls were pretty wiped out afterward. They danced VERY hard.
Isa was a pro as usual but Emmeline only liked how cute she looked standing up for 5 minutes at a time and then she was more interested in seeing how she looked upside down. I fixed her hair a lot.
Josh got a free pass on child care for the day since he had to be with the groom and all. Well, maybe not free. I'll cash that one in later.
To keep Emmeline busy we did some of her oral exercises in the mirror.
Happy
Sad
Happy
Sad
She eve took a little power nap ;)
Sadly I got no pictures of them actually going down the isle because I somehow ended up being the child wrangler in the waiting area until the got through the door and then I couldn't exactly sneak in behind then :( Josh said they were adorable and did a great job.
The flower girls got to come sit down after walking down the isle which was good. Not good enough for Emmeline though. I think I got to see about 3 minutes of the ceremony and spent the rest of the time with this.
Isa was of course an angel...when she wasn't bored.
With the cool chalkboard
Awkwardly we ended up right outside the front door just at the Bride and Groom came out and would have had their 15 seconds of privacy before everyone else followed. So me.
Emmeline is more then a little obsessed with the Bride and Groom and she kept going up to them and wanting them to dance with her or hold her. It was cute at first.
The girls were pretty wiped out afterward. They danced VERY hard.
A Pro picture.
2013/03/02
What If There Are Two Birds?
I recently downloaded the Disney Junior app for the iPad. Emmeline really likes it because it will have 1-3 episodes of all the shows. The one she has really taken too is Doc McStuffins. I hate this show. It's not that it annoys me like say, Barney does. I dislike it for other reasons.
First, this kid might have a mental disorder. She makes everyone actually call her "Doc"? Is she a dwarf or a schizophrenic? What is your real name?!
Second, The "check up" song really gets under my skin.
Time for a checkup - Time for a checkup.
I am gonna Check your ears, check your eyes, find out how much you've grown.
(Time for a checkup)
I am gonna listen to your heart beat, fix you up - ready to go.
(Time for a checkup)
It's ok if you giggle. This will only tickle a little.
Time for a checkup - Time for a checkup.
I have been to many a check up where not only did Emmeline NOT giggle but it definitely DIDN'T tickle.
Talk about misleading kids! I can see it now, some kid who believes sweet Doc will go for their check up and then have their world come tumbling down because their vaccinations didn't tickle at all! Also , doctors can't always "fix you up".
Third, as a child who slept with ALL my stuffed animals on my bed so none would feel left out, I do not think it is a good idea to have toys come to life. I think is turns children into stuffed animal hoarders. They can't give it away! It's alive! This was only made worse by the most recent episode to post on the app where a toy is shocked to find out she is in a yard sale. She is confused and betrayed that her human friend apparently doesn't love her anymore! "Doc" finally convinces her that if they confront the little girl in question they are sure to find out it was all a mistake. And what do you know? The little girl does say she LOVES her toys and would NEVER get rid of them. Does Disney own A&E?
Lastly I find the sassy black hippo nurse offensive. I'll leave it at that.
First, this kid might have a mental disorder. She makes everyone actually call her "Doc"? Is she a dwarf or a schizophrenic? What is your real name?!
Second, The "check up" song really gets under my skin.
Time for a checkup - Time for a checkup.
I am gonna Check your ears, check your eyes, find out how much you've grown.
(Time for a checkup)
I am gonna listen to your heart beat, fix you up - ready to go.
(Time for a checkup)
It's ok if you giggle. This will only tickle a little.
Time for a checkup - Time for a checkup.
I have been to many a check up where not only did Emmeline NOT giggle but it definitely DIDN'T tickle.
Talk about misleading kids! I can see it now, some kid who believes sweet Doc will go for their check up and then have their world come tumbling down because their vaccinations didn't tickle at all! Also , doctors can't always "fix you up".
Third, as a child who slept with ALL my stuffed animals on my bed so none would feel left out, I do not think it is a good idea to have toys come to life. I think is turns children into stuffed animal hoarders. They can't give it away! It's alive! This was only made worse by the most recent episode to post on the app where a toy is shocked to find out she is in a yard sale. She is confused and betrayed that her human friend apparently doesn't love her anymore! "Doc" finally convinces her that if they confront the little girl in question they are sure to find out it was all a mistake. And what do you know? The little girl does say she LOVES her toys and would NEVER get rid of them. Does Disney own A&E?
Lastly I find the sassy black hippo nurse offensive. I'll leave it at that.
2013/02/27
CAN YOU HEAR ME NOW?!
Yeah, I didn't think so. I had noticed Emmeline's volume had gone up a bit and I was having a hard time getter her attention when she wasn't looking at me. So I decided that among all the other stuff going on with Emmeline right now, we should throw in a sedated ABR. It seemed harmless enough. Her hearing hasn't really changed in 4.5 years. I was wrong.
When the audiologist came out of the she told me Emmeline gave her a hard time. She was sedated. I was not so secretly hoping their machines weren't really working or that somehow there had been some interference. After booth testing today I found out I was wrong.
Emmeline lost quite a bit of her hearing in her left ear and some in her right, her now "not so good" ear. What does this mean?
When the audiologist came out of the she told me Emmeline gave her a hard time. She was sedated. I was not so secretly hoping their machines weren't really working or that somehow there had been some interference. After booth testing today I found out I was wrong.
Emmeline lost quite a bit of her hearing in her left ear and some in her right, her now "not so good" ear. What does this mean?
Here is what is called the "speech banana" in order to hear normal spoken voice your hearing needs to be above the banana. Or in other words it needs to be between 15 and 25 dB. Emmeline's right ear falls at 50 to 60 dB at the low frequency and 40 to 35 dB at the high frequency. This means she has moved from a mild hearing loss to a moderate hearing loss.
In her left ear she is at 95 to 105 dB across the board. So in her left ear she moved form a low moderate to high profound. If there is such a thing.
So, to make this a plain as I can for you. My daughter can't hear me talk. According to the test. Now, that being said, she responds to me. In the test they did a part where the audiologist asked Emmeline to point at a certain picture on a card. Doing this she would point at the correct picture at 30dB in the right ear and 80dB in the left ear. Even with those better results everything will now change.
At the end of March she will have an MRI and CT of her ears. After that we can figure out what steps need to be taken in order to get at least 1 of her ears hearing consistently over the speech banana. She may qualify for a cochlear implant or a BAHA for her left ear. There is just no way to know until we can see what her inner ears parts look like. My guess is they are a mess. Her right ear should be able to be aided to above the speech banana.
I feel sick. There is a lingering question in my mind that no one can answer.
Will/when will she go deaf?
When I ask, I get the sad smile. I know I'm not the first parent to ask that or to get their sad smile. I also knew before I asked what the answer would be. The thing I HATE to hear. We just don't know. I don't handle "don't know" very well. I'm a doer. I might not like it but I will and can do it. But first I have to know what "IT" is.
I feel defeated. We can have some great days, weeks and months with Emmeline and then everything seems to hit at once. I totally realize how terrible this sounds but I have been looking forwards to having Emmeline's g-tube taken out since they mentioned she might need one. I have had dreams and fantasies about what it would be like for 4 years. Now it's here and all this other stuff is really ruining it for me. This was not in my dream. There that's my self centered rant. I know what I want doesn't really matter. What matters is Emmeline and figuring out the best way for her to communicate. I can be a grown up. I know I can...I hope I can.
2013/02/20
Um...No Thank You?
So we went to the surgeon appointment. Emmeline caught on pretty fast to what we were talking about and did her very best to distract us with her hyperactive freak out but we were not deterred. She did keep a VERY close eye on the surgeon when he was giving her the once over.
It was a pretty overwhelming visit. I am used to things taking a good long while to get done in the medical world. I mean, we once has to wait 4 days before they would even try to figure out why Emmeline couldn't breath. 4 days! If I remember correctly breathing is kind of essential for living but hey, I'm not the "expert". Anyway, you can imagine my surprise when the Doctor came in and asked if I wanted him to take out the g-tube right then.
I froze. That thought hadn't even crossed my mind and most of you know, I try and prepare for any eventuality. My anxiety failed me that day. I had no idea what to do. So, I did what any pressured feeling anxious introvert would do. I chickened out. I blamed Josh, I blamed Emmeline, I even put a little blame on Isa. I, in all my bravery, could not say "I am not ready". I totally and completely choked.
Not permanently mind you. I still hate the thing. I just couldn't pull the trigger.
I didn't want to traumatize me or Emmeline by just holding her down and popping it out. I've had to do some really unpleasant things to that little girl over the last 4 years and I just couldn't put that on my list. At least not yet. I have to give it my best shot to prepare her (and me) for this.
If that means bribing her with toys and treats then so be it.
The only problem with my brilliant present idea? She asked for "a real animal"...
It was a pretty overwhelming visit. I am used to things taking a good long while to get done in the medical world. I mean, we once has to wait 4 days before they would even try to figure out why Emmeline couldn't breath. 4 days! If I remember correctly breathing is kind of essential for living but hey, I'm not the "expert". Anyway, you can imagine my surprise when the Doctor came in and asked if I wanted him to take out the g-tube right then.
I froze. That thought hadn't even crossed my mind and most of you know, I try and prepare for any eventuality. My anxiety failed me that day. I had no idea what to do. So, I did what any pressured feeling anxious introvert would do. I chickened out. I blamed Josh, I blamed Emmeline, I even put a little blame on Isa. I, in all my bravery, could not say "I am not ready". I totally and completely choked.
Not permanently mind you. I still hate the thing. I just couldn't pull the trigger.
I didn't want to traumatize me or Emmeline by just holding her down and popping it out. I've had to do some really unpleasant things to that little girl over the last 4 years and I just couldn't put that on my list. At least not yet. I have to give it my best shot to prepare her (and me) for this.
If that means bribing her with toys and treats then so be it.
The only problem with my brilliant present idea? She asked for "a real animal"...
2013/02/18
Really, Really Ready?
I have hated Emmeline's g-tube since they put it in. Really, really hated it. I spent hours and hours crying about it to anyone who would willingly listen. As well as plenty who weren't so willing. I hated everything about it. The scarring, the smell, when it would get ripped out, cutting holes into clothes, the accompanying pump and paraphernalia, the reflux, oh the reflux, I hated it all. Don't get me wrong, g-tubes can and do save lives. Did it save Emmeline's? I don't think so. Josh thinks my hate for the tube clouded my judgement and that it really did save Emmeline. Maybe it did. I wasn't exactly thinking clearly for several years back then. I just know how I felt deep down. It was by far the most traumatic surgery for me and we've had many. It is the only one where I had an almost uncontrollable urge to burst into the OR and grab her off the table. I spent the whole procedure sobbing in the waiting area. I hated it. I never made "peace" with it. We were never friends.
Today we are meeting with a surgeon to schedule getting it removed. After all this time, it is about to be out of my life forever...I don't know if I'm ready. Ridiculous I know. The fact is, I don't think it saved Emmeline's life, but could it in the future? Yes. (I literally just cringed typing that). I have hated it for so long. Hated it, but knew deep down that it was a HUGE safety net. My daughter can never starve, she will never not take her medicine, and she recovers faster from illness. All of these things keep her safe. They aren't the biggest problem for me though. What is?
Emmeline loves her tube.
It's been a part of her for as long as she can remember. It's HER tube. When we talk to her about getting it taken out she protectively covers it with her hand and says "No! My tube!" As someone with anxiety I can understand her reservations. This is all she has ever know. People are telling her she doesn't need it anymore and life will be better without it but she's not buying it. It's all she knows. She feels safe with it.
Being a parent is hard. I have had to make countless decisions for Emmeline because I think they are in her best interest. Most of the time she doesn't know. They aren't things she sees. But she'll see this one. They are always hard for me. I do not like making decisions. Not even little ones for myself much less life altering ones for someone else. I had to choose to give her the g-tube and now I have to choose to take it away. She trusts me and I can't help but feel I am betraying that trust. I can't help but wonder. Are we really, really ready?
Today we are meeting with a surgeon to schedule getting it removed. After all this time, it is about to be out of my life forever...I don't know if I'm ready. Ridiculous I know. The fact is, I don't think it saved Emmeline's life, but could it in the future? Yes. (I literally just cringed typing that). I have hated it for so long. Hated it, but knew deep down that it was a HUGE safety net. My daughter can never starve, she will never not take her medicine, and she recovers faster from illness. All of these things keep her safe. They aren't the biggest problem for me though. What is?
Emmeline loves her tube.
It's been a part of her for as long as she can remember. It's HER tube. When we talk to her about getting it taken out she protectively covers it with her hand and says "No! My tube!" As someone with anxiety I can understand her reservations. This is all she has ever know. People are telling her she doesn't need it anymore and life will be better without it but she's not buying it. It's all she knows. She feels safe with it.
Being a parent is hard. I have had to make countless decisions for Emmeline because I think they are in her best interest. Most of the time she doesn't know. They aren't things she sees. But she'll see this one. They are always hard for me. I do not like making decisions. Not even little ones for myself much less life altering ones for someone else. I had to choose to give her the g-tube and now I have to choose to take it away. She trusts me and I can't help but feel I am betraying that trust. I can't help but wonder. Are we really, really ready?
2013/02/11
Yoga Challenge Complete
I did all 21 days. Without skipping. Well, I skipped Sundays but I didn't skip any workouts. I feel at this stage in my practice I can give an accurate opinion on yoga. You know, now that I'm a pro.
I am still not crazy about yoga. I don't hate it as a whole now but it definitely isn't my favorite.
Some of the days were a complete waste of my time. There were 2 routines in particular that I could have done without. they were both relaxation routines We all know how much I love to be told to calm down right? Right. Probably wont do those again. Not for actual yoga anyway.
I think my favorite was the core day. My abs were shaking when I was done. There was also one instructor in particular that always kicked my butt. She did the "fun flow" that I have mentioned before. I don't think that means what she thinks it means. I also would have preferred her routines on mute. She was extra annoying about "feeling how cool that was" and "inhaling through the front of your heart" and "exhaling through the back of your heart". What the what?! You should get your heart checked out lady. Or any heart really. I'm not sure you really know how they work.
Overall it wasn't a total waste of time. My hips aren't hurting as much, I have too much in the rear area to really get into Bakasana without tipping all the way over, and I found out my left side is much more flexible and stable than the right. There are days I will probably do again. But definitely on mute.
The super good thing about doing all 21 days? Josh talked me into getting this outfit as a reward. I needed a good pair of statement pants. Isa told me to "pose". The celebrity "I kinda have to pee" pose appeased her.
I am still not crazy about yoga. I don't hate it as a whole now but it definitely isn't my favorite.
Some of the days were a complete waste of my time. There were 2 routines in particular that I could have done without. they were both relaxation routines We all know how much I love to be told to calm down right? Right. Probably wont do those again. Not for actual yoga anyway.
I think my favorite was the core day. My abs were shaking when I was done. There was also one instructor in particular that always kicked my butt. She did the "fun flow" that I have mentioned before. I don't think that means what she thinks it means. I also would have preferred her routines on mute. She was extra annoying about "feeling how cool that was" and "inhaling through the front of your heart" and "exhaling through the back of your heart". What the what?! You should get your heart checked out lady. Or any heart really. I'm not sure you really know how they work.
Overall it wasn't a total waste of time. My hips aren't hurting as much, I have too much in the rear area to really get into Bakasana without tipping all the way over, and I found out my left side is much more flexible and stable than the right. There are days I will probably do again. But definitely on mute.
The super good thing about doing all 21 days? Josh talked me into getting this outfit as a reward. I needed a good pair of statement pants. Isa told me to "pose". The celebrity "I kinda have to pee" pose appeased her.
2013/02/06
One Of Isa's Favorites
I would recommend a parental run through just to make sure it wont freak out your littler ones.
2013/02/04
2013/01/31
No Thanks, You Can Keep Your Lung Cancer
I can't go on real runs. Well, I could but I think we all know my stance on choosing between sleep and exercise. Anyway, I have started running the stairs outside our apartment. I can do it whether or not Josh is home because if the girls need me I'm right outside the door. And boy have they needed me mid run.
I try to do it in the morning so I am not competing for the stairs with other people. Well, most people. Apparently the smokers are going nuts after going all night without smoking and they come out of woodwork. One woman came come from her 3rd shift job and told me as she trudged up the stairs while puffing on a cigarette, that she wished she was doing that but just needed some motivation. How about putting out that cigarette for starters? Because not only does that make it harder for you to get going it actually makes it harder for me to move as well. Yeah, Thanks.
There is another neighbor who no kidding, came out and smoked a cigarette, went back in her apartment and then came out and smoked another one before I was done. I run for 20 minutes. REALLY?!
I think there should be smoking sections in life. You can only smoke there, no where else. Does that infringe on your rights as a person? I don't care! I mean, we have special areas to take your dog to poop. Poop wont even kill me. But you might. I'll trade you. Smoke for Poop? Oh, it's too cold for you and you don't want to go all the way out of the stair well to smoke? Too freaking bad!!! This is the outdoors, and you my non friend are ruining it for everyone! So go kill yourself on your time and not while I'm trying to be healthy! Can't you see I'm miserable enough doing this without your nicotine floating into my already overtaxed lungs!?
I try to do it in the morning so I am not competing for the stairs with other people. Well, most people. Apparently the smokers are going nuts after going all night without smoking and they come out of woodwork. One woman came come from her 3rd shift job and told me as she trudged up the stairs while puffing on a cigarette, that she wished she was doing that but just needed some motivation. How about putting out that cigarette for starters? Because not only does that make it harder for you to get going it actually makes it harder for me to move as well. Yeah, Thanks.
There is another neighbor who no kidding, came out and smoked a cigarette, went back in her apartment and then came out and smoked another one before I was done. I run for 20 minutes. REALLY?!
I think there should be smoking sections in life. You can only smoke there, no where else. Does that infringe on your rights as a person? I don't care! I mean, we have special areas to take your dog to poop. Poop wont even kill me. But you might. I'll trade you. Smoke for Poop? Oh, it's too cold for you and you don't want to go all the way out of the stair well to smoke? Too freaking bad!!! This is the outdoors, and you my non friend are ruining it for everyone! So go kill yourself on your time and not while I'm trying to be healthy! Can't you see I'm miserable enough doing this without your nicotine floating into my already overtaxed lungs!?
2013/01/24
Yoga Day 8
Today I learned not to do 20 minutes of stair running before doing a 45 minute "fun flow". It made it VERY not fun.
2013/01/22
Yoga Day 6
I just did day 6 of my yoga challenge. It was titled "Tension Release Hip Openers". MY HIPS HURT! I can't tell if they are open yet or not. Or honestly what that even means. I'm not sure I like this day. Luckily I only have to do it once in the 21 day cycle. Time to go run my stairs with the Avetts.
2013/01/21
I Canned!!...Or Jarred Or Whatever...
Josh got me a pressure and water bath canner for Christmas!! I am super excited about doing some canning. It would be more fun if I could grow my own produce but maybe later.
My first attempt was with salsa. Other then the fact that I didn't cut my peppers and onions quite small enough I am thrilled to announce that all 7 jars sealed!! Now that I have had this nice morale booster I can try something more fun! Like soup! Thrilling I know.
2013/01/19
Yoga 21 Day Challenge
I don't like yoga. At all. I don't find it relaxing, I can't breath, my hips hurt, the "moaning"is NOT happening, and I constantly fall over.
That being said, almost everyone I know that has done it loves it. Especially my mom.
Over Christmas she had some Kohl's Cash that was set to expire at midnight. We all know I can't tel free money go to waste so I got on their website and found a 21 day Yoga Journal challenge. It was supposed to be a nice variety that was good for all levels.
Since I'm old and I should give things a fair shot before I die, I decided to try this. 21 days straight of yoga. I just did day 4. Some days have been really hard, some super easy. It's nice because I really have no idea what to expect so I can't really dread it properly. So far I have only collapsed out of 1 pose, and fallen out of 2. Pretty good I'd say. Isa even joined me yesterday. My breathing is still TERRIBLE. I'll keep you posted.
That being said, almost everyone I know that has done it loves it. Especially my mom.
Over Christmas she had some Kohl's Cash that was set to expire at midnight. We all know I can't tel free money go to waste so I got on their website and found a 21 day Yoga Journal challenge. It was supposed to be a nice variety that was good for all levels.
Since I'm old and I should give things a fair shot before I die, I decided to try this. 21 days straight of yoga. I just did day 4. Some days have been really hard, some super easy. It's nice because I really have no idea what to expect so I can't really dread it properly. So far I have only collapsed out of 1 pose, and fallen out of 2. Pretty good I'd say. Isa even joined me yesterday. My breathing is still TERRIBLE. I'll keep you posted.
2013/01/18
Some Things I Love
Kissing my sleeping babies right before I got to bed
Fully leaded Dr Pepper
Heavy blankets and the fan on at night
Being done working out for the day
A freshly vacuumed floor
The last few minutes of my shower when I turn the hot water WAY up
Showering without interruption
Watching Isa dance
When Emmeline holds my face nose to nose with hers and stairs into my eyes
Watching Josh teach the girls
Hiding and listening to Emmeline play pretend with herself
Honey, sunflower seeds and blueberries
My hair long
Cuddling in PJs until well past lunch time
Having second breakfast
Surprise packages in the mail
Among other things
Fully leaded Dr Pepper
Heavy blankets and the fan on at night
Being done working out for the day
A freshly vacuumed floor
The last few minutes of my shower when I turn the hot water WAY up
Showering without interruption
Watching Isa dance
When Emmeline holds my face nose to nose with hers and stairs into my eyes
Watching Josh teach the girls
Hiding and listening to Emmeline play pretend with herself
Honey, sunflower seeds and blueberries
My hair long
Cuddling in PJs until well past lunch time
Having second breakfast
Surprise packages in the mail
Among other things
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