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Pajama Pics

The day we found out that we were having a boy I went on a little shopping spree to buy some boy things and I found a little sleeper that matched one that Z got for Christmas last year. He calls them his Rock Band pajamies. I got out my camera the other day so I could get a few pics of them matching, because both of them are on the verge of no longer fitting into the snugly guitar PJ’s. 
In the meantime while the flash is firing SJ gets her messy face in there wearing nothing but undies. 
She was really hamming it up. 
It was the first picture I have of the 3 of them together and other than the nudity it was picture perfect. So I threw some footie pajamas on SJ hoping to capture this charming moment with my three little cuddle bugs, but…
 I should have known the moment would not last that long. Oh well.
 I did manage to get this cuddle bug action Thanksgiving morning. Co-sleeping at it’s finest. We usually start out with the bed to ourselves. The pile up happens gradually over the coarse of the night when we are the most vulnerable. 
 It’s like one big pajama party. That’s how we roll.
By |2015-05-14T23:15:38+00:00November 24, 2012|Uncategorized|5 Comments
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What To Expect When You Expect Hearing

We are about 10 days away from SJ having her cochlear implant activated. Right now SJ has the internal device, but that doesn’t mean anything without the sound processor, which is typically given 3 weeks after implantation. When scheduling the activation the Doctor gave me several dates to choose from. I had to pause for a moment to let it all sink in. I am selecting the day that my daughter will hear. They actually call it her hearing birthday. She will start hearing from that day forward. I chose the soonest date possible of course!

Am I excited? Yes, absolutely, but to be honest I’m guarded.  This isn’t the first time I have expected SJ to hear. The first time was after the initial sound booth test. I felt confident that she was not deaf. We left the ENT’s office doing our own hearing evaluations. We would ring bells, shout her name, look for reactions as airplanes flew overhead and she never responded. One time I went in the bedroom where Z and SJ were still asleep and I banged some pans together loudly. Neither one of them woke up so that experiment was kind of a wash. Then we got the hearing aids and when they turned them on they said it would be gradual because they wanted her to be able to adjust to hearing. Sometimes I thought I saw her making progress with the hearing aids, but still nothing significant.

I feel like I have spent the past 8 months trying to catch flecks of dust floating in the sunlight. I want to reach for something and really be able to grab onto it. I want to know that she hears and I am hoping it will not take extensive detective work to be able to recognize it. J and I have been given a lot of information from her team preparing us for the realistic and even then there has been some confusion about what to expect when they turn the implant on. In order to alleviate some of this confusion for us and everyone else I emailed her Doctor. This is part of what she said in response.

The first day is different for everyone.  When I turn on the implant,
she may hear beeps, bells, or whistles at first.  Or she may hear
voices that sound more like Charlie Brown’s teacher or mushy speech,
or it may sound close to normal. I would suspect that our voices will sound
more like Charlie Brown’s teacher for the first week or so. Then,
after she is wearing it consistently, voices and speech will sound
more normal. 

She will be able to hear soft sounds, voices, airplanes-all on
the first day. No sound will be too loud, because I will control that
volume on the implant.  Her “hearing” with the implant will be normal
or close to normal when the CI is on.  She may not be able to
understand what you are saying right off with the implant although she
is technically hearing you, but the understanding part will follow
shortly.

Right when I turn the implant on, she may have an awesome reaction,
like pointing to her ear, laughing, etc. or she may have a not so
great reaction, like crying.  Like I said before, every child reacts a
different way.  Basically, expect any reaction as a sign that she is
hearing!

So that is what you can expect from SJ on her hearing birthday, and you can expect me to be a nervous wreck. I would say I don’t want to get my hopes up, but to quote one of my favorite lines from Monk “That’s what hopes are for.” 

By |2023-06-12T06:19:26+00:00November 19, 2012|Hearing Aids, Uncategorized|3 Comments
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Ezra’s Birth Photography

It’s been a tradition with each of my kids to put a compilation of photos from the pregnancy and birth together for a slideshow video. Early on in the pregnancy I started hunting for just the right song for this baby. I don’t remember how it came to me, but there is a song called Lullaby that I listened to back in High School. The lyrics were perfect, but the music wasn’t what I was looking for. So J learned the song and recorded it for this video. My sister in law graciously traveled an hour to be there as a support and as my photographer even though she doesn’t have any photography experience. I had to have pictures though. Not only are there pictures from my birth, but as a photographer, and someone who views childbirth as a natural and beautiful experience it isn’t that strange to me. I am really careful to make sure it is all tastefully done, believe me! Even then I have to remind myself that birth photography, although growing in popularity, is still considered weird to a lot of people. Then again so is midwifery and water birth, but I’ve never let any of that stop me. Anyway, enough rambling. Here is the much anticipated slideshow of Ezras’ arrival.

Hospital: The Women’s Hospital of St. Joseph’s East
Midwife: Melissa Courtney
Song: Lullaby by All Star United
Song Performed by: My amazing husband  

By |2015-05-14T23:15:38+00:00November 18, 2012|Uncategorized|1 Comment
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About Me

J called when I was writing an updated version of my about me page and when he asked what I was doing I told him I was “having an identity crisis” I have been meaning to update my “about me” page for a while now. It’s been over 2 years since I wrote it and pretty much everything has changed since then. I just about went crazy trying to come up with what I wanted to say. I feel like I am at a crossroad in my life right now and so I don’t really feel comfortable talking “about me”.

I could just talk about ME and what I like and how I am just like so many other moms. I enjoy looking at recipes and crafts on Pinterest, but who has the time with 3 preschoolers ya know? La la la…

I know that if I only shared that and tried not to make a big deal about living with my parents and having a “late identified” deaf child then I would be hiding 90% of what my life actually is right now. However, I also feel like if I open up about the real me and share the whole truth then this idea that I would be alienated creeps in, or that I would look like a complete Debbie Downer. With all that I have going on it’s kind of like an out of body experience. In one year we quit our jobs, moved out of state, I turned 30, found out our daughter is deaf, and had a baby. I haven’t had a chance to keep up with all of the changes. It’s like there was a mix up and I got thrown into someone else’s life. I don’t even relate to myself right now so I can’t imagine how other people would perceive me. These are not the type of things I think all the time by the way, not at all, only when I am writing “about me”.

I plan on tweaking my website a little more in the future, but at least it no longer looks like I am a 20 something, part time photographer, mother of two, and pastors wife living in Texas. All of this soul searching even inspired me to change my voice mail greeting, which was long overdue. It’s a new day people. It is a new day.

By |2015-05-14T23:15:38+00:00November 16, 2012|Uncategorized|3 Comments
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The Comfort Tree

Before the new baby came I made a list of my top ten unnecessary items to bring to the hospital which was inspired by something I found on pinterest about what not to bring to the hospital. 
In the end, believe it or not, I did not regret bringing any of the items I put on that list, although the blanket and emergency delivery kit never made it out of the car because they were not needed (thank goodness). Many of the things on my list were items to help me feel relaxed during my first hospital birth. One of my favorite items was what I will call “The Comfort Tree”. 
This was another pinterest inspired idea. 
I used paper clips and twine to hang inspiring pieces on the tree, which included a sonogram photo, some cards from friends, my sons artwork with a maternity photo pasted onto it, 
some knit booties, and the invitation from the baby shower. 
One of my FAVORITE parts of this project was that my kids helped. We used a mason jar that they had collected fireflies in all summer long (don’t worry I washed it). The branch was one I found outside and it was held in place by some rocks my son collected. There was one for each family member and he colored them with chalk. 
 It was like a jar full of nature, friends, family, memories, and love. I was glad to have the tree at the birth. 

By |2015-05-14T23:15:38+00:00November 13, 2012|Uncategorized|2 Comments
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His Namesake

 

I took Ezra’s newborn photos with the old family Bible.
 As I scrolled through the pages looking for the book of Ezra I found some keepsakes from my dad’s side of the family.
 Each item tucked in between the pages had so much history enclosed about people that I am connected to but have never even met, like the obituary for my uncle Jack who passed away when he was only a senior in high school.
Ezra’s name is so significant because it represents the two things that are most important to us, faith and family. Our son’s name was not only inspired by the priest in the Bible, 
but it is a family name as well. J’s grandfather’s middle name was Ezra. We also got Ezra’s middle name, Wesley, from J’s dad.
Ezra’s birth announcement’s just came in the mail and I am so pleased with how they came together.
On the back there is a small balck and white photo along with this verse.
With praise and thanks they sang this song to the Lord: He is so good! His faithful love for Israel endures forever! Ezra 3:11
Back in the old days, like when I was born, birth announcements actually ANNOUNCED the birth to friends and family far away. You would get a card in the mail with the news, like whether it’s a boy or girl and how much they weighed etc. I know this is the digital age and all of my friends online knew the gender months ago and most of them saw pictures and read the whole birth story within a week after he arrived. I still like to send out a few official announcements though (even if it is 6 weeks later). It’s nice to have a photo to hang on the fridge or put in a scrapbook. I might even sneak one into the old family Bible. I think it would make a great bookmark for the book of Ezra.

 

Stationery card
View the entire collection of cards.
By |2021-10-01T23:31:44+00:00November 11, 2012|Uncategorized|3 Comments
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The Surgery

As I type “The Surgery”I hope that I never have to use a title like that ever again and then I remember that this is the first of two. We want (and it is recommended by her medical team and deaf teachers) for SJ to have bilateral cochlear implants, but right now I can’t even think about it. The nurses at the hospital asked about her getting a second CI and I told them “it’s kind of like giving birth, at first you think you don’t ever want to do that again, but then you forget.” as I say it I am holding my 3rd child who is 5 weeks old in my arms proving my point. I am learning that this part of our journey has to be looked at one day at a time. 

Day 1
From the morning of the surgery I gave play by play updates on Facebook and Instagram. This is how the day unfolded via social network…

8:35 am- I got this Brave doll to give to my brave little girl after surgery. The M&M snack mix is for the nervous mama 

11:13 am- On our way to the hospital. She’s just relaxed as can be checkin’ out the Toy catalogue.

3:30- They have given her the happy juice and she is about to go in.

3:58 pm- They are behind schedule, but SJ is in the operating room. Thank you for your prayers. I will continue to give updates.

5:59 pm- They are inserting the device now! For those that were wondering the entire surgical procedure takes around 4 hours. So probably an hour and a half left.

7:53 pm- Thank you for all of your prayers. SJ is finishing up right now. We haven’t seen her yet, but the audiologist and ENT had a very positive report. She won’t have the device officially turned on until after she heals, but they do check it once before they sew her back up and her brain responded to the sound when they checked it. They actually said “Every cell responded beautifully” In other words, the surgery was a success! Praise the Lord! We can’t wait to see our baby girl.

9:22 pm- It’s been an emotional roller coaster that I’m sure will continue for a while. 

AND this is what happened on Day 2…

J, baby E, and I stayed over night with SJ. Z was at home with both of his grandparents. It was a rough night including some vomiting, a nose bleed, lots of crying along with SJ signing “hurt”, and trying to rip off all of her hospital bracelets, monitors, IVs etc. The hospital staff wrapped up her Brave doll so she has a matching turban. We left the hospital at 10:00 am.

 The hardest part has been keeping her from ripping off her head bandage. It really bothers her, but she will become distracted for long periods and is almost used to it now. My best friend sent a package with all kinds of goodies for the whole family and it’s really come in handy. Things like this puzzle are what help keep that girl’s hands busy and away from her head wrap!

Day 3 (today)- SJ seems to be improving every minute. My strategy is spoil her to pieces. She cannot run around, climb, jump, get wet, or pull at her bandage, other than that anything goes. It seems like a fair enough deal to me.

Tomorrow we get to take off the bandage, but she still has to take it easy for another week. Then in 2 weeks she has a follow up with the surgeon, and three weeks until the implant gets turned on! Oh yeah, and I guess Thanksgiving is somewhere in there. Oy!

By |2023-06-12T06:26:59+00:00November 8, 2012|Cochlear Implants, Uncategorized|3 Comments
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The Word Love

2 years ago J and I renewed our vows for our 10 year anniversary. We recommitted to remain faithful and supportive of each other. We celebrated our love in the field among our closest friends and family. The golden sunset was the spotlight, the countryside was our backdrop, and it was beautiful.
Last week SJ had her last day at her tdeaf school before her cochlear implant surgery. I just happened to be there while when an intern needed to interview one of the parents for her practicum. One of the questions I was asked was if I feel like my daughter’s “exceptionality” (apparently that’s the latest politically correct word) has had an affect on my marriage. I could honestly say that it has brought us closer together. I’ve seen families ripped apart when difficulties arose, but the Lord has been our rock in the midst of these challenges and I give him all the glory for keeping our family strong. I was able to share all of this with the student that interviewed me last week. I am so grateful to have a godly man in my life that is completely dedicated as a husband and father.
 The most valuable thing that he has done for me in this season is listening. There have been so many unknowns this past year. I had to be able to sift through it all out loud and he was there to listen. He sympathized with me, encouraged me, and allowed me to cry.
 Today makes 12 years and although this anniversary was spent preparing for the big surgery tomorrow I have never felt closer. Don’t get me wrong I think romance and date nights are absolutely critical in a marriage, and I would love to be on a cruise right now, but this year we are going to be holding hands in the waiting room as the doctors perform a surgery that will allow our daughter to hear. She’s going to be able to hear the word love, to speak it, and to listen to love songs like the one her dad wrote for me and surprised me with on our wedding day. I can’t think of any better anniversary gift than that.

 

By |2017-11-09T09:44:43+00:00November 5, 2012|Uncategorized|4 Comments
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E’s First Month

E was born October 1st at 10:35 pm… BLINK… here I am that same time a month later. That’s how it feels, like the first month has happened in the blink of an eye. I know it’s cliche’, but it truly has gone by so much faster this time! Here is a list of little milestones. 
He now weighs 9 pounds 10 ounces. I was barely able to squeeze him into one of his newborn sleepers tonight, so it looks like he’ll be wearing 0-3 months size starting now. 
He finally lost his umbilical stump at 3 weeks and so we were able to give him his first real bath.
 This happened to fall during the time that J’s family were in town so there were 5 women doting over this little guy while his grandma washed him.
 He really likes the water! 
He even let them brush his hair

 His first holiday was Halloween. It’s funny, I saved all of the kids costumes and now that I have a chance to reuse them (E could have worn Z’s first costume which was a monkey) I would rather get to see them be something different.

At 4 weeks old he is still my little sleepy head. We gave him pacifier for the first time yesterday. He hasn’t really needed one and it was for a really brief period while I was with SJ at her school. I’ve heard that 3rd borns tend to be the most easy going and so far this is true. Hey it was true for me. Right mom?

By |2015-05-14T23:15:39+00:00November 2, 2012|Uncategorized|5 Comments
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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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