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Finally An Answer!

I have always had many dreams and fears for my family, but the thought of having a deaf child never crossed my mind. I can’t help but compare our lives to Mr. Holland’s Opus, a movie where a professional composer and music teacher has a son who unexpectedly turns out to be deaf. In our case it was the musician and worship leader whose daughter is profoundly deaf. What are the odds? Interestingly enough the odds are slim and thanks to SJ’s recent genetic testing we know just how slim they are.

Originally I didn’t think SJ had genetic hearing loss because like I said, it’s not in our family at all. We all had theories about what the cause was, but nothing seemed to match up. I had to come to terms with the realization that we may never know why. Then after connecting with another mom whose son is deaf she told me that her son’s hearing loss came from something called connexin 26. She said it is extremely recessive and they have no history of it in their family. Her son’s hearing loss is progressive and it is most common in Caucasians. It sounded an awful lot like SJ’s hearing loss. We had the testing done over a month ago and I recently got a call from the doctor with the results, which showed that it is in fact a result of Connexin 26! I can’t say I am thrilled about this one way or the other, but I am definitely relieved to finally have an answer. 
Here is a quick genetic lesson for anyone who might be like me and need the dummie’s guide to Connexin 26. It turns out that J and I are “carriers” of this recessive hearing loss gene. 3% of people are carriers, but of these 3% most of them will never know and it won’t matter because it doesn’t affect you at all. However if two carriers have a child then they have a 1 in 4 chance that their child will be deaf, a 1 in 4 chance that their child will have normal hearing, and a 50% chance that their child will be a carrier because the child receives a gene from each parent. I love this illustration that I got from raisingdeafkids.org
So most people have two “big D’s”, but J and I both have a big D and a little d. This means one of my parents and one of J’s parents do too. 
We know SJ has 2 little d’s as shown in the diagram above, but the question is what about my sons!? Well, Z we know can hear fine and since the loss happens early on he is in the clear. Whether or not he is a carrier we will probably never know. E passed the newborn hearing screening perfectly in both ears. We are supposed to bring him in to have hearing testing every 3 months until he is 3 to see if it progresses. The Doctors are pretty certain that he is fine though because with this type of hearing loss there is usually some indicator at birth even if it is not severe. On the other hand, we can have E tested for connexin 26 and just know for certain whether or not he is deaf. This would save us a lot of stress over the next 3 years so I plan on getting him tested. This simply means getting some swabs of DNA from the inside of his cheek, at least that is what they did with SJ. 
The next question is if we have any other kids will they be deaf if so does this mean that we are finished having children. These are serious questions. We always knew we wanted a big family and we knew this would not be our last pregnancy. Having this hereditary hearing loss doesn’t change anything. We don’t know what the future holds. We may not have anymore kids, it’s in God’s hands, but if we don’t it would not be out of fear of having a deaf child. If we do then it will always be a 1 in 4 chance that the child would be deaf. J JOKINGLY says if it’s one in four then we will have one more hearing child. Granted, it is a lot of hard work and it will be a LONG time before I feel like we are at a place to add another person to our family.
Speaking of a long time from now, my mind even began to wonder what this would mean for my grandchildren. Since SJ is two “little d’s” does that mean her children would be deaf? I don’t think so. As far as I know SJ’s children are guaranteed to be carriers because they will receive the deaf gene from her, but they couldn’t possibly have connexin 26 hearing loss unless she married someone who is a carrier and then they would have a 3/4 chance? If she married a connexin 26 deaf person then all of their children would be deaf? I put question marks because I don’t understand all of this and I could do a lot more scenarios, but if SJ were older I could just see her rolling her eyes saying “Mom. Seriously?” 
So there you have it. It’s Connexin 26. At least now we can stop worrying that we did something to cause SJ to loose her hearing. As it turns out J and I are just more alike than we ever thought. What are the odds? 
By |2015-05-14T23:15:39+00:00October 31, 2012|Uncategorized|1 Comment
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SJ’s Cochlear Implant

When J and I first heard about the cochlear implant we thought it was a decision that would best be left for SJ to decide when she was an adult. However, since then we have learned a lot more about the device and the procedure. It turns out that by leaving the decision to her we are making the decision for her because her brain would never be able to acquire or “decode” language later in life anywhere near as well as she can right now during this brief window of opportunity. We’ve done a lot of research and been in touch with many different people; people from the deaf communities, parents of children with CIs, adults with CIs,  Doctors, and teachers of the deaf. We’ve watched DVD’s, read books and articles and most importantly we’ve prayed over this decision.

 We started with her hearing aids, but her hearing loss is just too profound to really benefit from them. After this trial period we had a 2nd ABR, an MRI, and a CAT scan which confirmed that she would be the perfect candid for the surgery. After that we went to see a Doctor from one of the top Cochlear implant centers in the world. SJ’s medical records were reviewed by a panel of experts at that hospital. Everyone that has worked with SJ has suggested the cochlear implant and they all seem to have very high expectations of how she would benefit from a CI.  By this time we finally felt confident in the path that we were supposed to take, the surgeon we were going to use, and which of the 3 CI manufacturers we  she would be using.

The surgery will take about 3 1/2 hours. They will be performing the surgery on her right side. This means she will loose nearly all that is left of her natural hearing from her right ear, but the sounds she will gain through the implant will be a dramatic improvement so it’s a good trade. The type of device she will receive is called Cochlear Americas Nucleus 5.

To give a brief overview of what the implant is like, it starts with the internal device which will do the work of the damaged cochlea to provide sound signals to the brain. Then there is the external device called the processor. Picture a big hearing aid (or bluetooth) which hangs over the ear, but it doesn’t go into her ear it is connected to a transmitter that will magnetically stick to her head. I know it sounds very sci-fi, but this “bionic ear” technology is being called the biggest medical advancement of the 21st century and it will allow my daughter to hear!

So as you can see it’s been a major process and a lot of life changing decisions, but we feel confident in the choice we’ve made and have a peace going into this surgery. SJ will be operated on this Monday and will come home the next day. She should bounce back within days after surgery and will have the device activated in about 3 weeks after it has had time to heal. We will keep everyone updated.

By |2023-06-12T06:23:43+00:00October 30, 2012|Cochlear Implants, Uncategorized|2 Comments
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Helping Her Hear

It wasn’t exactly intentional, but between maternity posts, photos, and updates I have been blogging about baby stuff exclusively for over a month now. I hate to admit it, but there was a big part of me throughout this pregnancy that just didn’t understand why the Lord would bless us with this gift during a time when it seemed so “inconvenient”.

We found out we were pregnant just a month before we began the unexpected journey of discovering that our daughter is deaf. If it had been MY plan I would have found out about the hearing loss first and then decided to hold off on having any more children until after we felt like we had a handle on everything, but God had a different plan and without a doubt a better one!

Having E has been such a blessing for a thousand different reasons. One of them being the joy it has brought us in this season. SJ is having major surgery in less than two weeks. She is going to have a cochlear implant device on her right side. You didn’t know that because I hadn’t mentioned it. It’s a huge deal, but I haven’t really been focused on it until now, because lately it’s been all about the new person in our family, and rightfully so. I don’t know how to express how genuinely distracted I’ve been and it feels great. For the majority of my pregnancy I felt guilty for not putting enough focus on the baby, but all that has changed.

 I know most parents worry after they have a child that they could NEVER love another baby the way they do the first one. I hear it all the time. Then they have another baby and it turns out their love just grows and they fall in love again. I was worried about the chore of balancing another child in the middle of this pressure filled season. How naive I was! Loving this baby isn’t a chore at all, it’s a relief! I feel all gushy and sugary and it’s just what the doctor ordered. I know that having 3 kids will bring new challenges and stretch me in ways I never imagined, but I also know the rewards outweigh all of the struggles.

Having said all that, the past month has been a positive break from all the craziness that this year has brought, but the truth is I am ready to get back to it. It’s time to take the plunge when it comes to helping our daughter. She gets the cochlear implant on November 5th. It will be at least 3 weeks of healing before they will activate her and even then it will be a little sound at a time for her to adjust to. The unexpected journey we began 7 months ago is really just beginning and the next 2+ years we will be pulling from all our resources to intensely work with SJ toward the goal of hearing and speech. It could mean moving somewhere for schooling. It will probably include a surgery on her left ear as well. It will be lots of therapy and appointments. It’s going to be hard work. It doesn’t matter though, J and I want the best for SJ and


we are all in. 
By |2015-05-14T23:15:40+00:00October 27, 2012|Uncategorized|3 Comments
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Getting Along With Baby Brother

E has been a part of our lives for three weeks now. There has been a lot of family bonding happening around here. You may be wondering how everyone is adjusting to the new member and the answer in short is everyone is doing well.
We went to the park tonight and I brought my camera because we were going to take off Z’s training wheels. He still doesn’t quite have the hang of bike riding, but I was so glad to have my camera on me because I was able to capture this spontaneous moment with the kids being extra cuddly with baby E. 

For Z this is the norm. He wants to be with E all the time. He loves to hug him, kiss him, and lavish him with compliments about how cute he is. 

SJ on the other hand has never really paid much attention although she doesn’t appear to resent the new guy either. She usually just signs baby and sometimes tries to stroke his head. Tonight though she was being really sweet with him. 
There are a few things I have caught onto with having a newborn. One thing is that when you bring home that baby it makes your other children double in size. I have to remind myself that they didn’t actually grow overnight they just seem huge compared to their tiny baby brother. I’ve also learned to relish the newborn stage of life and soak up every single moment. With Z it was tough because I wanted to skip ahead to the smiling, laughing, walking, talking stages. With SJ I didn’t worry about it AS much, but with E I am wanting to keep him this way forever. Okay, not forever, but I REALLY love this newborn stage SO MUCH, although I know I will also love the boy, and someday man, that he will become. 
By |2015-05-14T23:15:40+00:00October 23, 2012|Uncategorized|1 Comment
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Visitors

We’ve had some company come in from all over the country just to see the new little prince! First off from Texas, J’s parents and niece stayed for a week and were a huge help with the kids when I was recuperating. 

 J’s aunt from California was able to come with them as well. It was such a great week we were sad to see them all go.

Then my best friend and her sister were scheming and trying to find a way to come in from Michigan. It was a long shot, but they made it, even if it did mean J had to tow their car the last 30 miles. Yeah, it was a bummer. Their car broke down and they had to rent a car to get back.  

 
Despite car troubles we really did have a wonderful time, so much so that J had to console his crying wife when they left.

The last guest left yesterday and I am back into the swing of things. I guess this means the postpartum honeymoon stage is over and it’s time for real life motherhood to begin again!

By |2015-05-14T23:15:40+00:00October 19, 2012|Uncategorized|2 Comments
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Family of Five

I can’t really say how I feel being a family of five since it’s only been two weeks and in that time I have been resting and recuperating. I’ve had lots of help around the house from both sets of grandparents, an aunt, and J handling all my normal mommy duties. It takes a team of adults to make up for me being on bed rest, what does that tell you? I am starting to slowly ease back into my normal routine and I’ll have to report back in a couple more weeks.

 We have a little tradition where we do our first family snapshot in specific shirts. It started 5 years ago Z’s shirt said birthday boy and mine said Super mom. J had a shirt that said dad to the bone but it shrunk.

 Two and a half years later we had SJ and a friend of mine got big brother little sister shirts for them. J and I wore the same shirts.

Another 2.5 years have gone by and J, Z and I all wore our shirts again! E got a little brother onesie from my friend Mels. SJ was the only one left and J and I found her big sister shirt on our baby moon.

 
It was really hard just to get the 3 of them sitting still for a half second, but I am hoping I will get some more sibling pictures soon.

By |2015-05-14T23:15:40+00:00October 17, 2012|Uncategorized|2 Comments
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Photo Stream Baby Update

I still have to take E’s official newborn photos along with pics of all of the kids together and with other family members, but I am being really strict about taking a full 2 weeks to recover from childbirth. 2 1/2 years ago I pushed it a little too much and got sick after having SJ, and the same thing happened with Z. So I am just resting and starting to feel more and more like my normal self everyday. Anyway, with photo sessions on hold I will share with you some wonderfully low quality pics taken with my old iPhone.
This was the outfit Z wore home from the hospital.

 Here J is putting him in the carseat for the first time. He left the hospital weighing 7.9 pounds. He is my smallest baby by a full pound.

 The kids like to make sure he has his “lovie”. I can’t get enough of those little newborn smirks.

 The photo below was taken at his first pediatric appointment. They had him come in for a second visit just to check weight and he is now 7.14.

 E is a natural when it comes to breast feeding. We haven’t had any problems at all, but when the lactation consultants at the hospital asked, I admitted his biggest obstacle is just waking up or staying awake. He is now 11 days old and still sleeps almost constantly. This is a rare photo of him with his eyes open, and you get to see that handsome dark hair of his too.

 Before E was born we searched at several stores for an orange hat because a lot of the clothes we gravitated towards had orange in them. Our orange hat search was fruitless, but at the hospital they have volunteers that donate knit hats for each baby and E’s was ORANGE! One of the nurses even commented on his hat because they give many different colors, but she hadn’t seen an orange one before. We think they made pumpkin hats for October which was perfect for my October birthday boy.

E is just the sweetest, cuddliest, sleepiest, and most content baby. However, I know the days are coming where he is going to require a little more. I am sure it will be a rude awakening for E when the family visits will be over and he won’t be held ALL THE TIME, but for now it’s easy street and nothing but cuteness. I’ll take it. 
By |2015-05-14T23:15:40+00:00October 12, 2012|Uncategorized|3 Comments
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He’s Here (My 1,000th Entry)

It’s a boy!
Ezra Wesley
Born October 1, 2012 at 10:35 pm
at The Women’s Hospital in Lexington Kentucky
He weighed 8 pounds 1 ounce
His height is 20.75 inches

It’s been a tiring first few days which is why I am a little behind with this announcement. That and I wanted to get caught up with blog entries I had previously written about the hospital bag, the birth plans, and my maternity outfits. You see, I knew I was coming up on my 1,000 blog post and I couldn’t think of any better thing to write about for the big ONE THOUSAND than the birth announcement of my son.

He’s perfect in every way. I had forgotten the euphoric emotions that come along with having a new life in your arms. I could say thank you to God one thousand times for blessing me with this tiny treasure. I could come up with a thousand reasons that after only 2 days of having him here I am hopelessly captured by him. It hasn’t been the easiest journey, but I would do it all 1,000 times more to have precious Ezra in our lives.

I love you my sweet baby boy! 
By |2015-05-14T23:15:40+00:00October 4, 2012|Uncategorized|2 Comments
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Going to Town With Brown

I thought it would be fun to squeeze in one maternity edition of What I Wore Wednesday before it’s back to squeezing into pants without elastic waste bands. So, I had a few snapshots taken of what I’ve been wearing during these final weeks of pregnancy

First off we have my baby shower ensemble which consists of a thrift store shirt and consignment shop boots. Along with two pairs of brown leggings. The double leggings is a little trick I picked up from Lindsey, the host of What I Wore Wednesday. She wore two pairs for extra warmth, but I thought it would also come in handy to avoid fashion faux pas, like see through leggings.

Next up is what I wore on my baby moon. I got this Old Navy maternity dress second hand from a friend and I paired it with a cardigan and wedge heels. I actually ditched the sweater and wore my hair down when my husband and I went to a concert that evening. The dress transitioned from day time to evening wear quite well actually.

I am usually super conservative when it comes to pictures in bathing suits, but there was an indoor pool at our hotel on our baby moon and I wanted to show how this Land’s End swimsuit, which was a result of my postpartum swim suit challenge from 2 1/2 years ago, works so well as maternity suit too. Look at that belly!

Then finally we have a Liz Lang maternity dress which is yet another thrift find that I have had for many years. It’s come in handy for many occasions, pregnant or not.

 Looking back at some of my favorite maternity ensembles and looking ahead to autumn I think it’s safe to say 

I’ve got a thing for this color and I know it. I love me some brown. I’m not afraid to show it!

By |2015-05-14T23:15:40+00:00October 2, 2012|Uncategorized|2 Comments
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A Monumental Occasion

For me birth is like a wedding; a grand event, an emotional production, a monumental occasion worth celebrating. 
I am tedious when it comes to planning out details for parties and gatherings. I can’t help myself, and believe it or not the birth of my children fall into that catagory for me. Besides my own scrupulous check lists, I am notorious for creating packets for family members that include phone numbers, birth plans, directions, schedules etc. I am not a pregzilla though, really I am not! I believe in the statement blessed are the flexible, for they will not be bent out of shape. Natural childbirth is probably the epitome of unpredictability and that is one of things that I find alluring about it, while at the same time doing everything I possibly can to be prepared.
Since I tend to have inconsistent contractions and fast labors I have planned for J and I to head toward the hospital when contractions are a whopping 10 minutes apart. From there I have a list of ideas for killing time and keeping my mind off of things. 
This shouldn’t be too difficult since I’ve had almost 9 months to fall in love with the city of Lexington which is where the birth will be taking place. In fact in preparing hotel information, hospital coordinates, and places to eat or entertain children during the labor, I got a little carried away and went ahead and made a brochure. Yes an actual brochure that I titled “The Busch’s Guide to Lexington”. 

 It was fun for me to do and we all got a few good laughs out of it. It’s really practical too though, everyone in the family can know what’s happening where and how far it is from the hospital. 
So you’ve peeked inside my hospital bag, you’ve had glimpses of my birth plans, and as much as at all looks like it is coming together I guess we just have to wait and see what how all of this unfolds. As long as I come home with a healthy little baby then I will feel like this mission was a success.
By |2015-05-14T23:15:40+00:00October 1, 2012|Uncategorized|1 Comment
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