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All About The Cochlear Implant (CI)

“I have a question about the implants … does the part that is on the outside of her head stay on all the time (even at night and during bath)? I was just wondering how bath time works and bedtime (can she only sleep on her back? is she able to comfortably sleep on her side, is the outside piece water proof)?”
A couple weeks ago my friend left this question as a comment and I wanted to not only answer it, but to give everyone the inside scoop about how a cochlear implant works and reveal some of the mystery behind the bionic ear without getting too technical. 
First of all during surgery the Doctors implanted the CI’s internal parts into SJ’s skull. Amazingly her surgeon made the incision behind the ear and then pulled the skin back to drill a well into the bone and embed the device just under the skin. 
The image above shows the internal device.  You can feel a bump on both sides of SJ’s head. It’s pretty obvious where it is, but not something you would notice without looking for it. You can see a scar and the bump in this photo, but this was right after surgery so her head had been recently shaved and the cut is fresh. She was wearing her processor on her ponytail at the time to allow her ear to heal.

There are many parts to the cochlear implant and they all have specific names, but lets just go with layman terms for now.The external device looks like a giant hearing aid with a wire, that sends the information from the microphone, then to the magnet, then to the internal parts. When the magnet comes off the sound goes off too. 
 

The INTERNAL part is completely water proof, “sports proof”, and from what I understand feels like it’s not even there. However, having a magnet means she can’t go through metal detectors or have MRI scans.  
The EXTERNAL part is considered water proof, but there are some stipulations. She can wear it in the bath, but we take it off to wash her hair. She can wear it at a water park or in the rain. She can not wear it swimming deep under water or submersed for more than 30 minutes. Some of the other CI parents I have talked to actually feel more comfortable taking it off for swimming altogether or having their child wear a special swim cap.  

 SJ is not supposed to sleep with her processors on. I have heard of some adults that do, but it is recommended that the skin gets a chance to “breath” and that makes sense. It’s also a good time to recharge the batteries and put let the device air out in a drying container. 

To answer Tracey’s question the part on the outside of her head should be on every waking hour. I am not sure what we will do when she starts swimming, but I guess we’ll cross that bridge when we get to it. When we went sledding we took it off because we can’t afford to loose a $50,000 piece of equipment in acres of snow and I’ve heard the same rules apply in the ball pit!

It’s still a little strange to have her hearing be controlled by remote and powered by batteries. It’s been 4 months since the first surgery and I feel like I know just enough to get by. Someday SJ will be the owner of her “ears”, but for now the whole family is responsible for them. We all, including Z, are learning together and working together as a team. Eventual it will be 2nd nature. 

By |2023-06-12T06:23:30+00:00March 3, 2013|Cochlear Implants, Uncategorized|2 Comments
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Oh Be Careful Little Mamas What You Pin

*WARNING* This post contains graphic images that are inappropriate and definitely unsuitable for children!!! Please, please, please proceed with caution!!!***

Does anyone else remember the children’s song “Oh be careful little eyes what you see… There’s a father up above and he’s looking down in love, so be careful little eyes what you see.” It’s a simple Biblical concept about guarding yourself and being aware of what you do and say and where you go.
I have had a message burning in my heart for some time now and my friend Amy inspired me to final say something.

She has been blogging about body image all week for NEDA (national eating disorder awareness). This topic is soooo important to me because I see the damaging effects that an unhealthy body image can have on young girls/women. They don’t value themselves so they become dangerous in what they will do as they struggle to find self worth. I went through a time in my life where I longed to be someone else. I really felt like I was hideous. I hated who I was and lost years of my life being distracted by this issue. I praise God for delivering me from the darkness that held me down in that period. I am grateful that although I don’t wake up every morning feeling like a beautiful creation, I know that I am loved and I am lovely.

I don’t think I need to state hundreds of statistics about how women are objectified in our society or how millions of women are suffering from eating disorders. We all know (I think we do) that this is a problem. We are responsible for the example we set for younger girls. Lets talk about what we can do about it. I don’t think there is anything wrong with exercise or wanting to look nice. I think obsessing over how we look and coveting other women’s bodies is a problem. You might think of lust as something guys do, but women lust over women’s bodies in other ways and it’s just as bad. I have had pinterest for a year now and I have to admit as much as I love the recipes and craft ideas I get fed up with some of the racy content that I see nearly everyday. If my child (or husband) was looking over my shoulder while I was scrolling through the pages I would have to close my web browser. You might be wondering who am I “following” that would show topless women or women in thongs. It’s coming from girls I grew up with and women including mothers from church and it’s pins about exercise. Really, that is all it is, but the images are often (in my opinion) unrealistic and offensive. These are just a couple examples that weren’t completely x rated, and I am sorry to be circulating the exact garbage I am trying to avoid, but I feel like it’s the only way to show you the content I am talking about. They might make you laugh or cringe, but if you are like me they will make you mad.

So that’s what it’s all about? 

Extreme “fitness”??? 

You WILL be uncomfortable your entire life if you don’t know where your true identity lies. 

 LADIES! This woman is the only woman that looks exactly like this! Embrace individuality!

I repeat #3

The power to change along with enough money for a boob job. 

This one says “22 best exercises for a perfect butt” and I have no words to respond to this image. 

Don’t believe these lies. 

I am sure this could be inspirational for some, but it makes me sad.

How low can you go? YIKES! 
Now I realize that the same women that pinned these could potentially read my blog. I am not trying to call you out, I am calling all of us out. We can do better. It’s time to stop believing the lies of the enemy that scream that we have to all look like the photoshopped women in the magazines. What we are “pinning”, what we are focused on, or watching on TV, or saying about ourselves it’s all sending a message to the next generation. Our “daughters” are paying attention! We can tell them they are beautiful all day long, but it won’t matter unless we SHOW them how to believe it themselves.We show them by example. If we desire to be the above images then that’s what true beauty must be. My goal is prove to them otherwise.  
By |2015-05-14T23:15:38+00:00February 28, 2013|Uncategorized|5 Comments
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Little Ears

We’ve spent a lot of time focused on SJ’s ears lately. She had her 2nd (and final) cochlear implant activated yesterday. So she is hearing bilateral now. YEA! Thank God everything went smoothly and both surgeries were successful without any complications or infections. Ironically, baby E is the one that ended up with the ear trouble this week.

None of my kids have ever dealt with ear infections, so when E wasn’t acting like himself we couldn’t figure out what the problem was. He was so upset on Saturday night that on Sunday morning we kept him home from church even though he didn’t have a fever. I was worried that my easy going baby had turned into a colicky bundle of discontent and when the Doctor couldn’t get him in on Monday they suggesting bringing him to an urgent care so I did.

Sure enough the Doctor cringed when he looked in E’s ears. He has a double ear infection and ruptured eardrums. I have heard of people bursting their eardrums and I knew it was painful, but I never realized how common it is or that the eardrum heals itself. E didn’t burst his eardrums, for if he had it would have brought relief from the pressure, he did tear them though. I knew his cry sounded like he was in pain. J and I both agreed on that and our parenting instincts were right, but it’s still sad to confirm that the shrieking and screaming meant he was suffering.

The doctor and I talked for a bit and I learned that he and I are alike in that we are both really cautious and conservative when it comes to antibiotics especially with a little baby, but in this case there was no way around it. This makes E by far the youngest of my 3 children to ever be on antibiotics. Z and SJ were well past 2 years old when they had to take anything. Either way I am grateful there is a remedy for what he is dealing with. He hasn’t had any Tylenol today and he seems to be back to his usual bubble self, which means I am a little more bubbly too.

By |2015-05-14T23:15:38+00:00February 27, 2013|Uncategorized|3 Comments
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It’s Not That Simple

Today is SJ’s 3 month hearing birthday. This is a bittersweet day for me. On one hand she is doing better than ever. She’s enrolled in a phenomenal school and has both surgeries behind her positioning her for a world of success and opportunity ahead.

 One milestone we’ve had came last month when I called SJ’s name while she was quietly playing alone. I repeated it louder and she still didn’t respond. That’s when I shouted “SJ Are you wearing your processor?!” I wasn’t upset, but I immediately realized something was up because these days, as long as the conditions are right, she will always acknowledge me when I say her name. Sure enough she was not wearing her processor. I got excited over the fact that we are to the point where I can tell whether she is wearing it or not. You can see a difference. Unfortunately, just a few days later when I came to pick her up from her therapy session I knocked loudly on the open door. Her back was turned to me and she didn’t hear me so I called her name. Still no response. I said “SJ it’s mommy. Mommy’s here. SJ are you listening?”. Eventually she saw me and then jumped into my arms with all her might. I was discouraging that she didn’t HEAR me. I believe she thought my voice was coming from the therapist and so she didn’t care. I can guarantee that if she had recognized my voice she would have responded.

Fast forward to this past Tuesday when I had a meeting with one of the advisors at her school and she basically said SJ is not where they would like her to be at 3 months. No parent wants to hear that their child is behind or struggling developmentally. Her team feels like the reason is probably that her volume isn’t loud enough which is an issue that needs to be addressed by her audiologist. Her ENT and the school have contacted her audiologist directly so we’ll see how the next appointment goes.

I shouldn’t be panicking about this news, but it’s hard not to. I already struggle with worry in this area. I know she is doing well, but there are some days that I just do not see results. Lets say you wanted to loose 100 pounds and you know you had a lot of work ahead of you. You’re motivated and ready to do whatever it takes. Then you went a couple weeks without seeing any change on the scale. Then your physical trainer pointed out your problem areas. You would be a little discouraged right?
There are so many wonderful things happening, I don’t want to focus on the things that aren’t happening, but so often people ask about SJ’s Cochlear Implant and I hear things like “Wow, it must be have been exciting to watch her experience all the sounds around her for the first time” and it’s really not like that. I was at our typical hangout (Chic Fil A play land) talking to another parent about her CI and he said “so that fixes it?” I wish I could impart the past 6 months of knowledge I’ve acquired about this device and her hearing loss and just have strangers instantly understand how complicated it all is. Back to the weight loss analogy, some people use gastric bypass surgery as a way to loose weight, but it’s not like POOF you come out of surgery instantly permanently skinny. From what I understand there is still a lot of work involved. It’s not like “that fixes it”.

Oh, and just a warning, I have a few more blog posts planned about the Cochlear Implant process. This isn’t going to become the hearing loss blog, this is just where I am at right now. And because I think it’s important to remember where we came from let me end with some of SJ’s progress and goals

In the past 3 months SJ has started to…

Turn when I say her name (not every time, but that’s typical for anyone in my family)
Mimic the word “bubble”
Mimic the word “up”
Attempt the word “Open”
Dance to music without any visual queue
Respond to some sounds some of the time such as a baby cry, printer, white noise, crinkling paper.

I look forward to the day SJ…

 can recognize my voice
flinches or is startled by loud noises
gets annoyed by certain sounds
cares if the volume is on or off when she plays a game or watches TV
knows that her favorite TV show is on by hearing it’s theme song.
will be able to identify basic body parts when she hears their names

By |2015-05-14T23:15:38+00:00February 21, 2013|Uncategorized|1 Comment
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Post Op

It’s been 3 days since SJ’s surgery and let me tell ya, she is a trooper. They had this crib in her room so I requested a bed.
 They told me they don’t do beds for children under 3, but they said if I signed a paper and supervised her at every moment they could arrange it. So I signed the papers in a heartbeat and they wheeled in the bed. She is going through enough already without having to wake up in a prison cell. They also put her in a diaper after surgery, but she never used it. She would just sign potty and I would page the nurse. Then all 3 of us would walk her and her IV equipment over to the bathroom. Back at home she threw up a few times and she would get one of the puke bags we brought from the hospital or she would go to the toilet and assume the position. I would gladly help her, but she doesn’t want to be babied. She’s always been the most independent toddler I know and surgery is no exception. 

Not to bring attention to myself, but here we are about to leave the hospital and yes I did have 13 inches of hair cut off. I will get a better picture posted soon. I loved how SJ’s cochlear implant on the right side could still be used over her bandage. 

When we got home this cookie bouquet was sitting on the doorstep. It was from SJ’s school.

She was really excited about the delivery.

Now the headdress is off, and tomorrow she goes back to school! Her follow up appointment is on Wednesday and she will probably be activated next week. Here is a video that I took today of her saying the word UP. This is a big milestone for her. I can’t wait to hear what comes next. 

By |2015-05-14T23:15:38+00:00February 19, 2013|Uncategorized|5 Comments
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How to Prepare for Cochlear Implant Surgery

SJ just made it through her 2nd Cochlear Implant surgery. The Doctors said it couldn’t have gone any better and all is well. I am actually at the hospital right now and since I am just waiting for them to finish up, I thought this would be a good time to share my CI surgery tips. I have always wanted to share these suggestions on the blog in hopes that it could be helpful insight for parents of children undergoing the CI surgery or a similar procedure.

1. Preregister for the surgery ahead of time

2. Make sure your child is bathed in preparation for surgery. It will be at least 48 before they can bathe again and even longer for washing hair.

3. Allow your child to stay up late and eat late since they will not be able to eat the next day and will be sleeping most of the day as well. Try high protein, high fiber foods to help them feel full longer. Make sure all food is hidden and definitely out of reach in the morning so there aren’t any sneaky snack mishaps. You may also want to eat before your child wakes up so that you are energized without having to eat in front of them.

4. Arrange someone to help out with siblings so that they do not get too bored or interrupt during critical moments at the hospital.

5. Have directions and itinerary for anyone you plan on coming to the hospital.

6. Bring snacks and reading material to have with you while waiting. You may know ahead of time that you are staying overnight, but even if you are told it’s outpatient that could change, so plan accordingly.

  

7. Dress your child comfortably and bring a couple changes of clothes. Choose shirts or pajamas that button up so that you don’t have to pull anything on over the”turban” and sensitive incision area.


SJ after getting the medicine to sedate her. She was in a happy place.

8. Bring small books or toys for child to have during waiting time which could end up being a while. They can also make great distractions while they check blood pressure, heat rate etc. 
(The doll was for her, the snack was for me)

9. After surgery have the nurses bandage up a doll or stuffed animal. You might also want to bring a familiar blanket or pillow case and a small photo album of loved ones to help comfort your little one.

 

10. During the time that the bandage stays on have plenty of hands on activities to change up frequently to keep your child from trying to pick at the headdress.

I have heard this referred to as a “sunshine basket” which might include stickers, puzzles, bubbles, you name it. They can be inexpensive and simple. The trick is to spread it out a little at a time. For example don’t give them a box of fun things, just give them one glow stick. Instead of a giant coloring book just give them one page to color, or cut out a couple stickers to peel off instead of the whole sheet. Otherwise it will all become boring and ineffective far too soon.

Obviously you know your child as an individual and your Doctor and surgical facility will be the best resource for how to prepare. These are just a few of things that helped me and SJ through both surgeries and I wanted to get it all documented while it is fresh on my mind.

On another note SJ should be coming out of the operating room any minute now and we’ll be staying at the hospital over night. I will be sure to update everyone on her progress, but so far everything is great. Thank you for your prayers and support!

By |2023-06-12T06:30:34+00:00February 14, 2013|Cochlear Implants, Uncategorized|7 Comments
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Home Away From Homeschool

Yesterday I talked about redshirting and one of the articles that I read on the topic asked this question

1. First and foremost, you must answer this: If you hold your child back, what will he do during this time of rapid growth and learning? You cannot redshirt the brain. If not formal kindergarten, what do you intend to do for him that will inspire, excite, and motivate him during this time of rapid growth and learning?

 

That’s a great question. Since we have to hang out at SJ’s school all day long I want to do all I can to implement a homeschool curriculum of our own. I just so happen to be buddy buddy with some of what I consider to be the best homeschooling moms around. Naturally I hit up these resources for a little advice. I asked three different moms a series of homeschooling questions. They have 13 boys between them and each of them have been home schooled. First of all out of the three moms that I emailed none of them typed an answer back. They did even better, one wanted to answer my questions via phone conversation, another through Skype, and the other one is local so we talked in person. It just goes to show how the teacher in each of them that wanted to be thorough about helping me learn. Ah, I love it!
The exciting thing about Z’s age (5 1/2) and homeschooling is that it’s not about flash cards and drills, but rather fostering the curiosity that is already there and doing it in a relaxed way. Focusing on activities like cooking, gardening, or nature walks. Some of the best advice I’ve heard was to ‘Read, play, go places and talk the whole time you are doing it’. Read out loud while nursing the baby. Read the same book 5 times and talk about a different subject each day that you read it. Have books in the car for that hour long drive. Everyday you read to him and he reads to you. What was the underlying theme I was hearing over and over from multiple people? READ!
That’s what I’ve learned from the experts. Now all that’s left to do is implement it.  My plan is spend the 7 hours we have to kill each day by dividing it between games, puzzles, movies, books, quiet time, play dates, active playtime and there will even be a little bit of formal teaching thrown in there each day.
I’ve enjoyed this opportunity to learn about homeschool curriculums and ideas. Even though I plan on putting our children in public schools eventually, I hope that I will always have a hands on active roll in my children’s educations. I look forward to the days ahead with all there is to learn together and teach each other.
By |2015-05-25T23:17:18+00:00February 10, 2013|Schooling, Uncategorized|3 Comments
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I Don’t Care What Color His Shirt Is

Will he be mature enough for kindergarten? Is it better to be the oldest or youngest? Will he be challenged enough? Is 17 too young to be thrown into to the “real world”? These are just some of the questions that rattle around in my head when I think of Z starting school. I’ve mentioned it on this blog three times already, but I’ll say it again. In Texas Z would have started Kindergarten next year and by Kentucky guidelines it should have been this year, but we held him back. He’s right on the bubble for the cut off date. Even though I know it is not true, I feel like the fate of his future rests on my decision. That’s a lot of pressure! I change my mind about this matter more than a driver with road rage changes lanes.

They actually call it “redshirting” when you hold your child back from starting kindergarten on time. I’ve recently read some articles about it and it can be pretty controversial. Some parents use it as a way to give their child an advantage in sports or an extra year of maturity for a competitive edge academically. Apparently I have become part of the 10% of American’s that are redshirting their children. We fit the statistic since it’s most commonly seen among white boys from the suburbs with late summer birthdays. J and I both have summer birthdays, but I went to Kindergarten twice so I know what it’s like to be the oldest in the class and J knows the feeling of being the youngest. There are some studies surfacing that show that it doesn’t help the student to have an extra year and in some cases may even hinder a student’s success. Then there is other evidence that supports the contrary.

I am not setting out to make my son an academic and certainly not athletic powerhouse by holding him back a year. Maybe if it were the Hunger games, but fortunately it’s not.  Waiting an extra year just happened to work out for our situation. I don’t care if his shirt is red, blue, or fuchsia (okay, maybe he would look a little weird in fuchsia). From what I’ve researched and what his teachers have told me Z is 100% ready for Kindergarten.
 
So for now we are working on retaining what he has learned and preventing boredom. I’ve gotten some helpful information from some of my homeschooling mom friends and I will share some of that in my next blog post. This whole ordeal is stretching me, but in a good way. To be continued…

By |2015-05-25T23:18:09+00:00February 8, 2013|Schooling, Uncategorized|4 Comments
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About That Behavior Thing

In my mini meltdown that was recently documented on this blog I referenced some behavioral issues we were dealing with. I know we just moved. Our schedules, schools, and environment have all changed and I can expect some set backs and back lashes from the kids, but I still don’t like it. Seriously, they are all 3 amazing and we actually have so many special and wonderful times together. I am really proud of each one of them, but then there are the other times! 

One of my best friends posted this the other day and I was actually downright convicted by it. 

Then as I was writing this I went to look up an article I found recently on how to raise a strong willed child and I think it is no coincidence that I came across this reminder instead

“God has given us the exact children in the exact birth order with the exact personalities not merely so that we can raise them but in order for them to be His tools in our lives to grow us up into the women He has created us to be. He gave us that strong willed toddler, that child we just don’t “’get,” that one with disabilities. Every child is a gift from God and He will use each one in our lives for good if we let Him. It’s helpful to ask, “God, what are you teaching me through this special child of mine?” God is full of mercy and full of grace. And He is always faithful.”

-Susan Yates

I just happened to see it in my online search and it speaks volumes to me! It actually made me cry, which is what I do these days. Thank you Lord for teaching me.

By |2015-05-14T23:15:38+00:00February 4, 2013|Uncategorized|3 Comments
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Jenga

Jenga! Have you ever played this game? You’ve got a stack of rectangular blocks and you take turns trying to remove a block from the stack and balance it on top without having it fall over. 
That is what my life feels like right now.

We just finished our first full week of this new routine. We live in Northern Kentucky now and travel 45 minutes north for SJ’s school in Ohio 5 days a week. We also have appointments in Louisville that we have to travel an hour south for. I think I am starting to get a grasp on how to get around this area. I’ve also managed to get the kids to bed and out the door on time everyday. All things considered it’s been an extremely smooth transition, but there have been days I’ve feel like I’m done. It’s my turn and every block I reach for is the one that will send the Jenga tower tumbling to the ground.

I’m trying to remember to take it a day at a time. I’ll admit though, I am exhausted. I feel it when I’ve made my 3rd lap around the new Kroger trying to figure out where the throat coat tea is located. Or when one more person mentions how I have my hands full and I tell myself not to scowl because they don’t realize that I’ve been told that by three other people that day. And sometimes I just cry or I take it out on my poor husband. I get depressed and want to quit. I feel selfish even admitting this. Yeah we have a lot on our plate, but we have so much to be thankful for. I think I am just in transition shock right now.

There have been some really challenging fights I’ve faced lately with bills and red tape  and children’s behavior issues. There are times I have wanted to get online and emotionally vomit all over my blog. I know that analogy is really appealing, and goes to show how grateful I am that I have used some restraint. However, I think it’s good to be a bit transparent from time to time. I am admitting that I am overwhelmed. I am confident that the Lord is faithful as always and we will get through this season. I need to read over the verses that everyone submitted because this is exactly why I asked for them and they are so good. Like this one Amy sent really applies to all I am feeling right now!  “When anxious thoughts multiply within me, Your consolations delight my soul.” (Psalm 94:19)

So for all of the mom’s out there that wonder how other moms have it all together and take on all of life’s hurdles without breaking a sweat, don’t worry, I for one am a big sweaty mess.  

By |2015-05-14T23:15:38+00:00February 3, 2013|Uncategorized|5 Comments
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