Since the last update, well, Bentley’s found her voice. She’s cooing an chaing, and saying crazy things like “eeeeehhhh,” and “eeeiiiiiiih,” and my favorite, “aaaaaaaaaaaaaaaaaa.” I know, she’s basically forming complete sentences. Baby Einstein called and they want their words back. Hahahaha.
For real though. The past month and a half has shown so much progress for my Angel. As I explained in the last update, we started small. Low “volume,” and each week it was increased. It really took a couple of weeks for us to get a good solid response. She would do a similar jolt, when drowsy, like in the original video. Over time she started doing more. The last two to three weeks have shown the biggest improvement. I’m not sure if I ever mentioned it, but Bentley never really cried. Hardly ever. I mean hardly ever. I drilled her head on the coffee table once, of course on accident, and she didn’t make a peep. She made this awful face, as if someone had just told her her Joboo died. But then, nothing. It was just an ugly face. I bet you’re jealous. You can be. But now, now it’s changed. She knows how to cry. And she can cry as loud as the best of them. Craziness.
For real though. The past month and a half has shown so much progress for my Angel. As I explained in the last update, we started small. Low “volume,” and each week it was increased. It really took a couple of weeks for us to get a good solid response. She would do a similar jolt, when drowsy, like in the original video. Over time she started doing more. The last two to three weeks have shown the biggest improvement. I’m not sure if I ever mentioned it, but Bentley never really cried. Hardly ever. I mean hardly ever. I drilled her head on the coffee table once, of course on accident, and she didn’t make a peep. She made this awful face, as if someone had just told her her Joboo died. But then, nothing. It was just an ugly face. I bet you’re jealous. You can be. But now, now it’s changed. She knows how to cry. And she can cry as loud as the best of them. Craziness.
I love bed time It is pretty cool though. After the last booth visit, it appears her hearing “volume” is almost right in line with a normal child’s. Which allows them to start tweaking the frequencies and channels and doing a little more fine-tuning. At least, I think. I think all the fine-tuning just comes with time. For now the focus is lets get the volume, and make sure she appropriately perceives sound. Next, let’s get the quality of that stimulus honed in to place where speech and music and birds are as crisp as possible. That might take a little while. Even though she speaks fluent English already, that English doesn’t always make sense to you and me. But we are moving forward. I also think she may be starting to figure out where that sound is coming from. No, not where in the room the sound is coming from. I mean, the magnetic things stuck to her head. She is getting pretty good and reaching back, grabbing the wire, and throwing a processor almost-nearly-not-quite across the room. I see this more in the morning and evening, but I’m sure it happens all day long for Lindsay too. This morning, I stuck it to her right ear. She instantly starts going “aaaaaaaahahaaaaaaaaa.” Which is AWESOME!, but then when I put on the left ear, and picked her up and began talking a lot, she reached back with so much intention, and ripped it off. I just laughed. What can ya do? It was funny. Maybe she was mad I woke her up. That’s not far off from how Jenna (my sister) used to act when we woke her up in the morning. Although, Jess (my other sister) acted about the same. Well, that just goes to show you how she is starting to hear, and not always keen on it. She also blinks her eyes when you make really loud noises. If you clap your hands next to her, she blinks with each clap. If you beat on a coffee can she even blinks in anticipation when you skip one hit. Those simple reflexes just astound me.
The biggest thing they don’t explain, very well, when getting ready for these implants, is how exhausting it is for the parents. I walk in each night and Lindsay is covered in sweat. Her voice is hoarse and raspy. She can hardly talk. Then she looks at me and says, “It’s your turn.” Then practically collapses from talking non-stop all day. We’ve hardly watched TV since B’s ears were turned on. There’s no time. Quality sound is what’s important, and the dialog from Suits is not what they consider quality sound. Music can be, but it depends on what kind. I’m going to have to wean her on to my favorite stuff, but thanks to B, I’m really branching out. Not that I ever listened to much of it, but I always appreciated Jazz. The distinct instruments and stylish riffs can really catch you by surprise. Fortunately too, it provides a great avenue for percussion and clean notes from trumpets, trombones, flutes, and that sexy raspy saxophone. Lindsay just throws on the Baby Mozart. Which is good, too.
The biggest thing they don’t explain, very well, when getting ready for these implants, is how exhausting it is for the parents. I walk in each night and Lindsay is covered in sweat. Her voice is hoarse and raspy. She can hardly talk. Then she looks at me and says, “It’s your turn.” Then practically collapses from talking non-stop all day. We’ve hardly watched TV since B’s ears were turned on. There’s no time. Quality sound is what’s important, and the dialog from Suits is not what they consider quality sound. Music can be, but it depends on what kind. I’m going to have to wean her on to my favorite stuff, but thanks to B, I’m really branching out. Not that I ever listened to much of it, but I always appreciated Jazz. The distinct instruments and stylish riffs can really catch you by surprise. Fortunately too, it provides a great avenue for percussion and clean notes from trumpets, trombones, flutes, and that sexy raspy saxophone. Lindsay just throws on the Baby Mozart. Which is good, too.
 Cousins |  |
Auditioning for a greek yogurt commercial Nighttime has created the problem. Mostly due to me. I’m not good at talking. I don’t know what to talk about. I’m getting better at asking people questions, in a hope that they will carry the conversation. However, Bentley can’t respond, and my questions run out quickly. I tell her about my day, but Lindsay say’s it isn’t “quality” enough. So then I make up silly songs that don’t make any sense. Fortunately for me, I love poetry. Didn’t realize that about me, huh? Well, one thing I have always looked forward to was sharing the poems of my favorite poet with my child. Shel Silverstein is his name, and the imagination of this guy was outstanding. The poem that was my personal favorite is “Warning.” However, my favorite now, is “No Difference.” I’ll leave it for you to read below. I’m reading through his books like crazy. Best part is, Bentley loves them!!! How do I know??? Because Lindsay says she is just like meJ
So there’s the hearing update. It’s pretty amazing. I’m telling you, these implants are already little electronic working miracles. I’m so thankful we have had the opportunity to receive them. They may create two incredibly awkward looking knots on her head, but my baby hears!!!! She’s also getting stronger. Crazy strong. You should see her. She’s not only sitting up for, what seems to be, hours at a time. But she is starting to push up from the floor with her arms. She is shuffling across the floor, pushing with her legs (in a way I picture a friend of mine to have shuffled, he was born with no arms). With Lindsay’s help she scoots from one side of the den rug to the other. Each arrival at the edge causing her face to light up, and she starts rubbing the hard floor with both hands. I’m doing some exercises where she sits on my knees (while I kneel on the floor) and as I raise up, she is forced into the standing position. She fights it the first few reps, but we’re already seeing some improvement in her stretching ability and the strength in her legs. I really think she’ll just bypass crawling, cause who needs it, and will go straight to walking. Even if it is with a walker.
So there’s the hearing update. It’s pretty amazing. I’m telling you, these implants are already little electronic working miracles. I’m so thankful we have had the opportunity to receive them. They may create two incredibly awkward looking knots on her head, but my baby hears!!!! She’s also getting stronger. Crazy strong. You should see her. She’s not only sitting up for, what seems to be, hours at a time. But she is starting to push up from the floor with her arms. She is shuffling across the floor, pushing with her legs (in a way I picture a friend of mine to have shuffled, he was born with no arms). With Lindsay’s help she scoots from one side of the den rug to the other. Each arrival at the edge causing her face to light up, and she starts rubbing the hard floor with both hands. I’m doing some exercises where she sits on my knees (while I kneel on the floor) and as I raise up, she is forced into the standing position. She fights it the first few reps, but we’re already seeing some improvement in her stretching ability and the strength in her legs. I really think she’ll just bypass crawling, cause who needs it, and will go straight to walking. Even if it is with a walker.
 Apparently the fall from Heaven doesn't hurt |  Seriously, auditioning |
Her strength is a good lead in to the latest genetics appointment. We had one a couple of weeks ago. I’m not sure what I said in the last update, but they were doing more tests, sending blood and tissue samples to other far-off laboratories. The geneticists even consulted some scientist in Finland, or Sweden, about Bentley, and tried to find out what else they should look for. No surprise, they have no clue what is going on. It sounds like they are convinced it is some sort of mitochondrial disorder, but all the usual genetic markers to these disorders are coming back negative. The c10orf2 gene may not be the culprit after all. We sent blood off from Lindsay, and me, and Lindsay had the same mutation as B. Meaning, that genetic mutation may not be the cause. If it was, Lindsay should have been exhibiting signs of the disorder as well. So, we are back to drawing more blood, sending off more tests, and hoping we figure something out. I really appreciate all the effort the genetics guys up at UAB are putting into B. They are trying as many things as they can. I can’t thank them enough for their efforts. I starting to think Bentley is going to have a disorder named after her. Which may be true, may not, but if she’s 10 years old and still doesn’t have a diagnosis, you’ll just hear me referring to it as “The PD”- The Phenomenal Disorder. Or something cool like that.
I’m not sure what else to update you guys on. I continue to say it, thank you thank you thank you. I can’t thank all of you enough for all the thoughts and prayers and support. We really do feel like we’ve been floating on air that last couple months. I can’t begin to describe the excitement I have at the end of each day as I head home to my angel who is going to hear me when I walk through the door. Thank you! My angel is becoming a toddler. We’ve moved on to “big girl” pajamas without the footies. She’s getting too old for that. She feels like she’s 10 feet long when I hold her. It’s nuts.
I’ll wrap this up, hold tight; just have had too much to talk about. I do ask for your prayers for a family we met Saturday. Thanks to Bentley’s need for shade, and an Uncrustable, Lindsay and I met the father of a little boy who may well be on the cochlear implant track as well. Josh’s son was born at 26 weeks, and has failed two hearing tests already (he’s a few months old now). I thought Josh was pretty gutsy to just start asking us all sorts of questions about B and the pink things stuck to her head. He didn’t lead in with a stupid question or silly comment like some do (but not you). Turns out, on April 22, Josh and his family will be going to the HEAR Center to test his son’s hearing, and possibly start the hearing aid to cochlear implant journey. Although he was born at 26 weeks, Josh appears so thankful that hearing is the only thing that may be a burden to his son. I plan to say one thousand prayers on April 22 – ok, maybe 100- for Josh and his family. Please throw a few up as well. It wasn’t much more than a year ago we pulled in to Children’s South, and diverted to the path we are on. What great things God can do in 14 months.
If you haven’t heard it, listen to the song “Live with Abandon” by the Newsboys. We’re not serving kids in Africa, or South America, or running a Mission on Skid row, but I feel this song does a great job of pulling together how Lindsay is running through life right now. Micheal Tait, Newsboys’ lead singer (previously of the legendary band DC Talk), says this song arose from Jesus asking Peter to step out of the boat (to walk on water). This is what my amazing wife has done over the past 8 months. She has really stepped out of the boat, put her career on hold, dedicated everything she has to our amazing little Angel, put all her instincts and intuition to the wind, and is walking everywhere God calls her. I can’t show her how appreciative I am. She’s the most amazing woman I know. I’d get her a gift, but since the pink rifle didn’t go over well for her birthday, I’ve just stopped trying. All I can do is tell you guys, Thank you Lindsay! You are the most awesome-ist ever!
Ok, I’m done now. I leave you with a new cool little poem (I'm not sure it's my favorite, but it's still really good), “No Difference," by Shel Silverstein.
Small as a peanut,
Big as a giant,
We’re all the same size
When we turn off the light.
Rich as a sultan,
Poor as a mite,
We’re all worth the same
When we turn off the light.
Red, black or orange,
Yellow or white,
We all look the same
When we turn off the light.
So maybe the way
To make everything right
Is for God to just reach out
And turn off the light!
I’m not sure what else to update you guys on. I continue to say it, thank you thank you thank you. I can’t thank all of you enough for all the thoughts and prayers and support. We really do feel like we’ve been floating on air that last couple months. I can’t begin to describe the excitement I have at the end of each day as I head home to my angel who is going to hear me when I walk through the door. Thank you! My angel is becoming a toddler. We’ve moved on to “big girl” pajamas without the footies. She’s getting too old for that. She feels like she’s 10 feet long when I hold her. It’s nuts.
I’ll wrap this up, hold tight; just have had too much to talk about. I do ask for your prayers for a family we met Saturday. Thanks to Bentley’s need for shade, and an Uncrustable, Lindsay and I met the father of a little boy who may well be on the cochlear implant track as well. Josh’s son was born at 26 weeks, and has failed two hearing tests already (he’s a few months old now). I thought Josh was pretty gutsy to just start asking us all sorts of questions about B and the pink things stuck to her head. He didn’t lead in with a stupid question or silly comment like some do (but not you). Turns out, on April 22, Josh and his family will be going to the HEAR Center to test his son’s hearing, and possibly start the hearing aid to cochlear implant journey. Although he was born at 26 weeks, Josh appears so thankful that hearing is the only thing that may be a burden to his son. I plan to say one thousand prayers on April 22 – ok, maybe 100- for Josh and his family. Please throw a few up as well. It wasn’t much more than a year ago we pulled in to Children’s South, and diverted to the path we are on. What great things God can do in 14 months.
If you haven’t heard it, listen to the song “Live with Abandon” by the Newsboys. We’re not serving kids in Africa, or South America, or running a Mission on Skid row, but I feel this song does a great job of pulling together how Lindsay is running through life right now. Micheal Tait, Newsboys’ lead singer (previously of the legendary band DC Talk), says this song arose from Jesus asking Peter to step out of the boat (to walk on water). This is what my amazing wife has done over the past 8 months. She has really stepped out of the boat, put her career on hold, dedicated everything she has to our amazing little Angel, put all her instincts and intuition to the wind, and is walking everywhere God calls her. I can’t show her how appreciative I am. She’s the most amazing woman I know. I’d get her a gift, but since the pink rifle didn’t go over well for her birthday, I’ve just stopped trying. All I can do is tell you guys, Thank you Lindsay! You are the most awesome-ist ever!
Ok, I’m done now. I leave you with a new cool little poem (I'm not sure it's my favorite, but it's still really good), “No Difference," by Shel Silverstein.
Small as a peanut,
Big as a giant,
We’re all the same size
When we turn off the light.
Rich as a sultan,
Poor as a mite,
We’re all worth the same
When we turn off the light.
Red, black or orange,
Yellow or white,
We all look the same
When we turn off the light.
So maybe the way
To make everything right
Is for God to just reach out
And turn off the light!
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