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"Beats by Dre got nothin' on me"

4/3/2013

19 Comments

 
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Isn't she so stinkin cute?  This week has been fairly chill...

After leaving our meeting with the neurologist last week we knew a muscle biopsy was going to be on the schedule soon.  After the surgeon’s office called to schedule an appointment for this past Tuesday, we couldn’t believe how fast they had gotten us on the schedule.  Unfortunately, it was a false alarm.  I was curious as to why anesthesia never called to give us a heads up for preop stuff on Monday.  It was because all we were doing was going to meet the surgeon and learn about what the biopsy entailed.  This was nice, but if the office had told us that Lindsay wouldn’t have taken the day off of work and I would have gone to class.  So, now we have the biopsy scheduled for next Tuesday, April 9th.  Bentley will have to be put under anesthesia again, like the MRI, and the procedure should last an hour or so.  He will take a nice little snippet of her thigh muscle.  Anesthesia twice in a month’s time is kind of nerve-racking, even for me.  I’m excited for the test results, but not to eat the expensive breakfast sandwich this soon after the last one.  

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Today was our first true speech therapy visit at the HEAR Center.  It was more of an evaluation day.  To see how Bentley is tolerating her hearing aids and find out how she is progressing developmentally.  We also learned a lot more about this “journey” towards cochlear implants.  However, the best part of the day was hooking Bentley’s hearing aids up to a machine that reduced the amount of feedback they receive!!!!! Now only the right side squeals, and not like a stuck pig, more like a pig talking in its sleep.  
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The speech therapist was great.  She wanted to know all about Bentley’s sleeping and eating habits.  She wanted to know about her activity during the day.  She is also evaluating me and Lindsay.  There is an “environmental” component to cochlear implant candidacy.  The powers-that-be need sufficient evidence that we are committed for the long haul.  Leading up to implantation, Bentley will need speech therapy at least every other week at the HEAR Center.  This could become weekly, depending on how she does.  We have to show that we will commit to this regimen as well as doing our homework. The therapists haven’t said this, but I think the hearing aids are more like training wheels for the implants.  The hearing aids allow us to get used to taking care of this devise that is attached to our child at all times.  I haven’t found an estimated retail price of the implant’s processor, but I imagine it’s expensive.  Not the sort of thing you want to accidently step on, wash, or leave sitting on the bumper of your mom’s car.  Good thing Jarod didn’t need a set of these when he was little.  Back to the regimen….One thing that concerned me and Lindsay is Bentley’s need for a level of communication prior to implantation.  Usually this would be a visual cue such as reading lips, hand signals, or simply turning her head toward what sounds she can hear, or light she can see.  Well, Bentley won’t be reading my lips anytime soon, so that is out.  Hand signals from a distance, NOPE.  Morse Code with a strobe light, nuh uh.    So we have to use touch or tactile means of communicating.  But then the “what if” game starts: 

What if she’s got a cognitive learning disability? 

What if she has muscular dystrophy and that affects it? 

What if she has the attention span of her father? 

What if I leave her in the grocery store? – oops, wrong “what if” game.

Could one of these factors prevent her from getting implants? I could ask so many questions, and most aren’t even relevant yet.  


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Following implantation therapy can become more frequent.  At that point we have to teach Bentley’s brain how to hear (if she has heard absolutely nothing at that point), and what sounds are and mean.  They say that she should have some level of hearing prior to implantation, it’s just the matter of figuring out how to tap into that level of sound and training it.  The YouTube videos make it look like all you have to do is flip a switch.  Apparently there is a little more to it than that. 


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The fun part, at least to me, is that I have three brands of implants to choose from.  I feel like I’m car shopping.  I’ve got brochures, dvds, and websites to look at.  Each one claiming their implant is the best.  We’ll see.  They now offer many accessories and colors.  Some are even waterproof.  If you can’t tell, I’m excited!!!  I basically get to pick out the most expensive and awesome set of headphones for my daughter.  “Your kid has Beats by Dre, my kid’s headphones will be attached to her brain! BOOM (with hand gestures)”

Well, I guess I’ll stop now.  Muscle biopsy Tuesday.  Oh yeah, I just learned there is going to be a cornhole tournament at Avondale Brewery on April 27th supporting The Bell Center, in case you want a fun afternoon tossing beanbags.

I’ll throw in an update soon about when the Texas and Nashville Bryants and the North Carolina Owens came to visit Bentley.  It was fun.  

19 Comments
Caroline Blair
4/4/2013 06:24:43 am

Justin what a strong and passionate dad you have already become to Bentley! To do all that you are for her is such an encouragement to me and I just want you to know that not only is Bentley benefitting from your devotion, love, and passion but all those who get to see her and read about her through this website will benefit and be inspired to be better parents as well. Thank you for sharing your story!

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Kendall Boggs link
4/4/2013 07:01:19 am

Justin, Thank you for giving me your blog site! I have thought and thought about all of you so much. Just know that all of the Boggs family are praying for you and sweet Bentley. She is just precious!!!

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Heather Mullens
4/4/2013 08:03:38 am

Hey Justin, just wanted to tell you and Lindsay hey and I hope you guys are doing well! I love your blog and thank you for all the updates on Bentley and how yall are doing. Just wanted to let you guys know that we love yall and we are praying for yall!

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Rachel Hokanson
4/4/2013 11:02:36 am

Oh my goodness! The pics are great!! She is precious, obviously! :) I will keep the prayers going. The time you are putting into this blog is most humbling, as well as the priceless love and devotion you are showing for your baby girl that comes with it. Hope to see you guys soon!

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Kim Spencer
4/4/2013 12:02:05 pm

Justin I am so glad to have your website to keep up with Bentley's progress. Your gave me the address. You and Lindsay are amaxing and Bentley is just precious. Know that Spence and I are praying for all of you. Also, Wadley keeps us updated when we see him. Love and hugs to all. Kim Spencer

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Kim Spencer
4/4/2013 12:04:42 pm

That would be your mother gave me the address! Need to start proof reading better!!

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Phyllis Scott
4/4/2013 12:11:05 pm

Thank you for sharing. Having been thinking about all of you.

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Cathy Benton
4/4/2013 12:29:01 pm

Keeping all you in our prayers!
Cathy and Skip Benton

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Courtney
4/4/2013 12:31:18 pm

Hey Justin! I'm one of your mom's Dohan friends. She shared your blog with our Sunday School class. Thanks for letting us on on the ride with you and your family. It is a privilege to pray for you all! You have one beautiful baby. Love all the pics!

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Melanie Hill
4/4/2013 01:29:35 pm

Justin, Walter and I are praying for yall! My Sunday School class at FBC is as well. Thank you for keeping us updated!

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Lisa Latham
4/4/2013 01:33:15 pm

Justin,

You are a rockstar Dad. And I've never met Lindsay, but she sounds like a rockstar Mom. I have no doubt that the two of you will be the perfect parents for sweet Bentley who is, by the way, GORGEOUS! I am so proud of the man you have become and I am thankful to have been a small part of your life (even if you destroyed my red jeep once a year for six years straight.) I am praying for you- for strength, wisdom, discernment and perseverance. And I will continue.

Lisa (Suttle) Latham

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Sandra Roland
4/5/2013 12:46:11 am

Justin & Lindsay, you are both amazing parents, and Bentley is so blessed to have you as parents. You'll never know what your faith, love & hope says to all that read this blog. God knew what he was doing when he gave Bentley such loving parents, and when he gave you such a precious gift. I'm friends with Lindsay's Mom, so I know how precious Lindsay's heart is...she had a great teacher. Your family is SO covered in prayer and we all wait anxiously to see Bentley's milestones. God bless you all.

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Evan Abbott
4/5/2013 03:23:42 am

Justin I had no idea all this was goin on with yall. But I we will be praying for yall and sweet mrs Bentley. I can't imagine what this is like for you and the rest of the fam. I'm glad I have found your blog so we can keep up with bentleys progress. If you and the family need anything lease do not hesitate to ask. Praying for the fam buddy.

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Kathy Thomason
4/5/2013 01:37:38 pm

Justin, I am a good friend of your mother's and Michael Thomason's mom. We just wanted you to know our love and prayers are there for precious Bentley and you and Lindsay. You are amazing and wonderful parents. So proud of your strong faith! We know that God is taking special care of Bentley and always will. She is a doll! Our love to all of you! Kathy Thomason

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Becca McVey
4/6/2013 02:12:59 pm

Justin and Lindsey, Bentley is lucky to have such great parents! You all are making great strides. I pray for Bentley everyday. I told Alana that I would volunteer to come and help in any way that I could. Keep on writing and keep on being positive.

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Nicole Sciacca Anderson
4/7/2013 08:08:19 am

Justin and Lindsay,
Not a day goes by that I don't think about the 3 of you. I am just so glad I've gotten a chance to read all these updates. I am truly impressed with your devotion to this sweet angel and to updating all your friends and family. PLEASE KNOW all of us reading love you guys so much and want nothing more than to know what to pray for and when. I love this last series of photos and I want to kiss her sweet cheeks. Jess tells me she's even cuter in person. Hope you're having a good weekend. Hugs to Lindsay. Angel kisses for Bentley.

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Charles & Julia Owens
4/8/2013 11:28:45 am

Justin, you and your family have been in our prayers for several weeks. You are a wonderful and strong father. God will continue
to give you strength and wisdom to make these difficult decisions for your precious daughter. All of you will continue to be in our prayers.

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Uncle Phil
4/10/2013 06:58:11 am

Justin, thanks for sending the pictures of Bentley's great new shoes. The boys are thrilled to see her wearing fashion that they picked out (I guess you can call those fashion?). We are praying for your family. We love you guys...Oh, and the boys are incredibly jealous now that Bentley knows Bo...

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Mary Anne Hokanson
4/16/2013 05:13:11 am

Loved the updates! The pictures are awesome. I loved the ones from the race. My company sponsored the Racing for Children's car and we had access to the paddock and Children's tent areas. Didn't get to go this year, but it is a great event. Bentley seems to be enjoying herself as much as you two. Love to the family.

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    I will be writing most of these.  Justin, that is, the dad.  Lindsay will provide her input.  

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