PS, As you may be aware, we Bryants travel as an army when someone is in need, so we are good in that respect. All we ask for is prayer.
Well, what a time for an update… I appreciate the requests I get for another one, and to know how B is progressing, growing, and doing. Thank you. Today I simply ask for your prayers. Bentley is in the hospital in what I guess you can call Serious Condition, not quite as critical as yesterday. Yesterday morning, I found B lying in bed unresponsive. She appeared to have gotten sick in her sleep and aspirated. She was warm, breathing, and had a pulse. We did call 911 and brought her to the hospital. After a tumultuous day, the Lord’s hand on these healthcare providers has her moving in the right direction. Bentley is suspected to have been in Septic Shock. She has been intubated and physiologically supported through a recipe of blood pressure medications, sedatives, ventilator, and fluids. At this point things are looking up. A number of the meds have been weaned off. The paralytics and sedatives have been turned off or greatly reduced. As of this morning the rate on her ventilator is being weaned as well. Last night, a couple hours after turning off the paralytics, she woke up and is showing evidence of intact brain functions. She is still on some sedatives to help keep her calm, but we are very pleased with what we have seen to this point. I send this out to capture that small batch of prayer warriors not reached yesterday. Please throw up prayers for my sweet angel. She is one tough little girl. She is in great hands. I know the Lord has carried this team and guided their decisions in treatment. We are not out of the weeds yet but I pray today is a day of continued progress and healing. Thank you all!! She wouldn’t be to this point without all of the prayers lifted yesterday. Thank you again!
PS, As you may be aware, we Bryants travel as an army when someone is in need, so we are good in that respect. All we ask for is prayer.
I say it each time. So much has happened since the last update. Bentley drove for the first time. She counts to ten. She can stand on one foot.
She can’t do any of that. But she is stilling growing like a weed. Big moments have been happening. Around Thanksgiving we bought a new car seat. A purple “big-girl” car seat. Pretty exciting. She no longer fits in the bucket. She loves this thing. She can sit up and face forward. It didn’t take her long to figure out how to sleep sitting up too.
Bentley’s second birthday was at the end of October. It is hard to believe she is 2 and working toward 3. I feel like she just popped out yesterday.
Right after her birthday we went to Wilmington, NC for a Bryant Family gathering, where she got to play in the sand and hang out with cousins for a few days. We also had a nice early Thanksgiving dinner. On this trip we are pretty confident Bentley learned what the phrase “All done” means. You can see her response in the videos below.
Right before Christmas she got an Amtryke!!! Don’t know what that is? Well, check out the video below and you’ll see. There is an amazing organization out there called Ambucs. Ambucs builds bicycles for disabled people. You can start as young as Bentley. As you grow, the parent can trade in the bike/trike for the next size up. Each one is custom fit to the recipient. If I’m not mistaken, all Birmingham Ambucs are put together by UAB Engineering students, which is pretty cool. These bikes are free to the recipient. I couldn’t believe it. I sent Lindsay up there to pick it up with a fat blank check expecting to eat Ramen Noodles for a few months. We didn’t have to pay a dime. Bentley’s feet are strapped in and she wears a five-point harness. We just removed the headrest because she was going to sleep while we pushed. Of course there is a handle on the back we can help steer with. It pulls slightly to the right, and Bentley hasn’t realized it yet. She just assumes she’s going straight. I keep trying to tell her to straighten up but that attempt is futile. Ambucs recently came to Dothan as well. Thanks to a local organization, Jon Lee Foundation, Ambucs are now available in the Wiregrass. There is a concert, JonJam, on February 28 that will be directing a large portion of the proceeds to supporting Ambucs in Dothan. A local leadership program I am a part of down here is selling tickets and working the event, if you want some tickets let me know. The proceeds go to support the Jon Lee Foundation and his R.E.A.L program and Ambucs of the Wiregrass. The organizers have agreed to allow a portion of our proceeds to help a local elementary school finish creating a Sensory Room. You may remember me talking about the one up at Hand in Hand. Sensory Rooms are awesome! It wasn’t hard for me to support the concert or the Sensory Room.
What else has happened? Oh yeah, she gained a pound! Bentley has been sitting at 18 pounds for over a year now. She is getting longer but hasn’t been able to pack on the weight. The last doctors appointment weighed her in at a whopping 19lbs. Craziness! She feels like she weighs about 30 lbs, but that is just because I’m a weakling right now.
Christmas saw a lot of fun with the family. Bentley got to play with her newest cousin, Juliana. Juliana is Jarod and Elena’s second child. She’s a sweet little ball of joy. We attempted the famed Bryant/Clark grandkid Christmas picture again. I actually missed videoing it this year, but I hear it was almost as good as William biting Bentley’s ear again. Trying to corral 13(?) kids under 5 is no easy task (my numbers may be off, there’s so many of them I can’t keep up. It feels like each month a new baby pops out).
Not a lot has changed in the routines. Lindsay’s weekly trips to Birmingham have continued. We are reaching the 1 year mark for Bentley’s implants. We are told she is right on track in her speech development. She hears like a normal 1 year old. I’m not convinced she is mumbling like one, but we’re on the verge of big words – like xylophone or transcriptionist. Ok, maybe just “eat”. Nevertheless she is getting pretty good at communicating her needs/wants with us. I’m sure I have explained her hand motions for her three favorite songs. Those have not changed, Bringing Home a Baby Bumblebee, Muffin Man, and Itsy Bitsy Spider. She has a hand motion for each one, and can be a broken record. We have recently added a couple songs including If You’re Happy and You Know It – she stomps her feet, even when it is clap your hands time. She has a very keen understanding of the words milk, eat, food, stand, and a few others. She has also figured out that if we say the sequence “1, 2, 3” something is going to happen next. We use this a lot with our standing exercises. She also likes to turn around in my arms and face forward. She will then throw her hands in the air and fall forward until I catch her. She thinks this is the funniest thing. I usually count it out for her “1, 2, 3 fall” and then she falls.
B still uses her standing chair each and every day. We do stretching exercises where she lays across our lap and we stretch each leg while singing a song. Her IT bands are supper tight and those legs do not want to go out straight. We are in a vicious fight trying to get her legs stretched out properly without hurting her. Lots of standing and stretching exercises are done daily. She is getting better at scooting across the floor. We can’t get her to crawl with her chest pushed off the floor, but she’s scooting. She is, however, starting to get pretty strong. Lindsay has her doing these exercises where she starts face down on the ground, she then brings B’s legs up under her sort of sideways. Lindsay puts her hand up under B’s chest and gives her just enough help that B thinks Lindsay is actually helping her. B will then push up off the floor and into a sitting position. I can’t wait until she sticks this. She is getting really close. She just won’t do it on her own. I even do this exercise each morning when I get her out of bed. I wont’ pick her up until she has sat up with minimal assistance. It is a work in progress, and sitting up on a squishy mattress is a little harder than pushing up from the floor.
Music therapy began this semester. Bentley loves playing the drums, although not how you would think. She sort of pats the drum. There is no beating. We have a toy drum for her here and thought she was getting pretty loud until Lindsay took it up to her sister’s house one week. Parker and Carson got ahold of it and went to town beating the absolute snot out of it. That’s when we realized she doesn’t quite beat the drum. She does like all sorts of instruments though. She has a tambourine, and some shakers, and it’s not an instrument but we got her an abacus. Maybe I’m wrong, but when she plays with that abacus I’m pretty sure she is already performing advanced calculus problems because she throws those beads around like a Harvard professor. Back to the music, she loves listening to music. It is the only way we can keep her ears on in the car. We have her a very tolerable "adult song" playlist including some hits from Jewell, Jack Johnson, and of course the Frozen soundtrack.
Paper is another new toy for Bentley. She has never liked paper of any kind until recently. We bombarded her with tissue paper during Christmas gift-wrapping time. It took a few days of surrounding her with it and helping her tear it, but now she absolutely loves paper. She mostly just picks it up and drops it over and over. She will take a large sheet of tissue paper and crumple it up, and sort of go crazy with it. It’s kind of a small thing, but the fact that she will now play with paper, and not cry when you hand it to her has been a huge deal for us.
Big news in the napping world: Bentley is finally taking a daily nap on a fairly reliable basis. This comes as a huge relief to Lindsay. She was very concerned Bentley had Non-24. Haha, not really. The nap is nice for Lindsay, though. Now she has a few minutes to herself. However, that will only last for a few more months.
B has pretty much proven you don’t have to see or hear well to be your typical 2yo. She is definitely learning how to throw a fit or tantrum. I’ll admit, they are pretty funny to watch. We have frequent fights over wearing our ears. She likes to throw them off, a lot. We have been told that is a battle she is not allowed to win. So we fight the good fight, and teach her lessons on losing. Fun times. Seeing the “normal” developments is really pretty amazing. A tribute to God’s awesomeness and how he created us to grow and learn and blossom into these little people with personalities and strong wills.
I’ll start wrapping things up. The Mercedes Marathon is coming up again. Bentley is honored to have 4 Bellrunners raising money in honor of her. Kendall Downs and Caroline Blair (my bonus sisters) are running the 5k on Saturday. Jennifer Andress and Joseph Langoria are running the real-deal full marathon on Sunday as Bellrunners for Bentley. Thank you Jennifer, Joseph, Kendall, and Caroline so much for supporting the Bell Center in Bentley’s name. We really appreciate it. You can click on their names to donate at their support page. One last reminder about JonJam, if you’re a Dothan local and want to attend February 28, please let me know. I have a lot of tickets.
Thanks for checking in on Bentley. It is so exciting watching her grow and explore the world. We can’t wait to see how her world expands when she has to share the attention as a big sister. In case you haven’t caught wind, Lindsay is due with Baby Girl Bryant #2 on June 6. We’re very excited and a little anxious. I’m sure Bentley will be an awesome big sister, just as soon as she figures out that she is one. Please send the prayers Lindsay’s way as she prepares to tackle two on a daily basis. Talk to ya soon…later.
SO, how awesome is that?!!!! Man, Lindsay did awesome (talking about the abc 33/40 video linked here). If you know her, you know how terrified she was to be on tv. It took a lot of coaxing and encouraging. I’m so thankful she got some much-deserved attention. Her Mom-ness is amazing. New word, “Mom-ness.” -Proper adjective? Grammar was never my forte. I just think Lindsay did so great. It’s funny. I know plenty of you have been around a filming of something, but they shot almost 6 hours of footage for a 4min spot. The camera man said he was just loving getting it all. Nicole put together a great story as well. Thank you. I also appreciate you not calling it a blog.
Well, here we go. Bentley has made so much stinking progress over the last few months. It’s really amazing to see what God has done through Lindsay to help Bentley get stronger and become more vocal. I know I keep saying it, but I’ll put together a video showing some progress soon. Finding the time to piece it all together is a little tough.
Her speech is really coming along. We have entered the world of music and as you can imagine, this is really getting her going. My Spotify playlists are starting to fill up with all sorts of random kiddy songs. Almost every morning, on my long drive to work, my music gets interrupted with the Good Morning song by The Kiboomers. Each morning Bentley gets to hear the Good Morning song. Her face lights up as soon as the lady starts singing. It’s so cool. That’s our new way of saying “GOOD MORNING!!!!!!!!!!!!” She seems to like it. I tried “Good Morning Vietnam” with Robin Williams, but didn’t get the same response. We have Bentley a little piano and she can bang on it for days. We discovered if you sit her in front of a real piano you have instant baby sitter, as long as she doesn’t fall off the bench. She hasn’t. Although she did fall off the bed. It was inevitable. Blind toddlers do that sometimes. Lindsay was beside herself. I reminded her, one day Bentley will walk into walls, right now she crawls into floors.
Bentley’s strength is not progressing quite as fast as we would hope, but showing improvement. We do standing exercises multiple times per day. We have this cool “standing chair” that isn’t a chair at all. It’s a convoluted harnessed contraption. It’s basically two poles with a bunch of straps between them holding her up. She stands in that 10-15 min a day. Then I do some exercises with her each night. She’s starting to lock-out her legs some, which is nice. Crawling still really isn’t happening either. She kind-of scoots along the floor dragging her arms behind her. Lindsay does some serious crawling training during the day. I’m, honestly, terrible at it. You have to keep her legs narrow together and help her move her arms ahead of her so she kind of pushes and pulls herself. We do some assisted pushups hoping to encourage her to push herself off the ground. The thing is, she loves the ground. It doesn’t bother her at all. That’s not what you want when teaching her to push up. I really wouldn’t be surprised if she walked before she formally crawled. That could be in 2017, but it could happen.
Vocally, Bentley has got the “ah” sound down pat. She can say “ah” just about 3,000 different ways. We play the Apples and Bananas song a lot to get her used to the other vowels. She really doesn’t move her mouth much when making her noises though. You kind of have to move your lips to get other vowels. A constant steady grin doesn’t do it. She has started to discover she can make different shapes with her mouth. Occasionally if she gets silent, you’ll look over at her and she’s moving her lips and mouth in to all sorts of crazy shapes. Now we just need to connect the two, sound and lip moving. Putting her hand on my mouth doesn’t register yet. Except with one thing, banging her teeth together. She does this funny thing where she chomps her teeth together over and over. As she’s doing it she is placing her hands all over her face and head, feeling the jolt caused by the sound. She starts with her cheeks, moves to both eyes, then her forehead, then the side of her head, next the back of her head, and finishes by placing both index fingers under her chin. It’s hilarious to watch, yet amazing all at the same time. She even does it to me. I can get going with the chomp, and she will put her hands on my face and start the investigation. Then she’ll go back and forth a little. She’ll do it, and I’ll do it. Pretty awesome how she picks up on that. (Just realized I may have talked about Bentley’s talking already, up a few paragraphs. That’s what I get for taking multiple nights to do this. Oh well.)
As summer has progressed you can imagine she’s spent quite a bit of time in the water. Lindsay has taken her to Water World a couple of times now. I assume she likes it. We’ve discovered Bentley is fond of anything that can squirt or spray water. Shower heads are a favorite. We’ve been able to make it down to the beach with friends and family two weekends this summer. Both times had some water fountain things Bentley could play in. She can sit on a splash pad and play with one stream of water for hours. She just loves it. The actual beach, to include the sand and ocean, was not been instant successes. The first time all she wanted to do was be held. She did ok with the sand when there was a light wind and not much surf, but the next day when the wind was howling and the waves were crashing it was obvious there was a little too much stimuli. We let her run silent for a while, and she was just as happy as can be. You can tell sometimes the noise just overwhelms her and she needs to chill for a minute. Let her get her bearings and then turn her back on. She’ll be fine. The second trip Lindsay was more prepared. With a baby pool in tow, she sat under the umbrella and played with her cousin Carson for hours. The waves never appeared to bother her then. She just needed some distraction. Did I mention she’s really cute in her itty bitty swimsuit? Cause she is. I said ‘itty bitty.”
I’m not sure what else to update you on. She had a great, progressing, last few months. Lindsay still makes her weekly trips to Birmingham. Lindsay rotates staying with her sister and mine. Lindsay’s dad is kind enough to make the trips with her pretty often. B’s been able to hit up the sensory room a couple times as well, once for another interview. I haven’t seen the article or video for it yet. I can’t thank ABC 33/40 enough for the great little segment on my two girls. They filmed a ton of video for the 4min spot, and talked with Lindsay for 2 hours or so. I really can’t pass up the opportunity to show people, because it really is answering the prayer I pray every night. I just want God to use her to touch the world. Lindsay and I are both so proud of how she handled herself. Bentley hasn’t gotten a big head about it yet. Haha. I’m just glad Lindsay could stop sweating long enough to film. She was so nervous I really thought she would cancel at the last minute. Lindsay, you were awesome!
Bentley had her first day of school today. Like everyone else lately. The next class she begins at The Bell Center requires Lindsay to drop her off and leave during class. It’s a group where volunteers help the kids do their activities. Lindsay is pretty anxious about it. I’m trying to get her to just go grab a turtle deluxe at O’Henry’s. Who am I kidding? Lindsay barely made it out of the building. Bentley did great though. When Lindsay walked back in she was sitting up at a table just talking away.
We’ll let you know how it goes. Ok guys. Ya’ll have a great week. Thanks for the prayers and support for my angel. Thank YOU for being awesome.
I'm literally in the middle of writing an update, but wanted to post the awesome video of Lindsay and Bentley from ABC 33/40's Talk of Alabama. They did a great piece on Lindsay and Bentley this morning. Lindsay was so nervous about doing it, and didn't want to be on tv AT ALL. She is very glad she did it. I am too. Just another opportunity Bentley is having to touch the world. Here's the video, I'll finish my update this week sometime. Lots going on over the last few months. So much to catch you up on. Thank you, Nicole and Bruce, for capturing my angel in such a great manner.
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.
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.
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.
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!
This one really is short and sweet.
God is Great, God is Good. Thank you Lord for Bentley’s little electronic miracles! That’s right. Little miracles. I’m pretty dang confident my angel heard me today, many many times.
We started the day split apart. I couldn’t drive up until this morning. Lindsay was running around like a chicken with her head cut off. At least that’s what she sounded like on the phone. We finally met up at the HEAR Center just in the nick of time (mom was with me). Lindsay’s parents, Mom, Jessica, and Ryan were all in attendance, along with a few friends from Children’s media team.
It all moved so fast. It’s weird. Since surgery, I’ve been going 90 mph. I’ve hardly had a chance to think about today. Which is sort of nice, because I didn’t want to get my hopes up. Although I’m naturally a realist, I couldn’t help but send my imagination into a flurry of dream reactions. I have to try my hardest not to imagine her face lighting up as we turned her ears on. I didn’t get the dream. I got so much more.
The audiologist hooker her processors up to a computer, and slowly played a series of beeps until we got a reaction. She was so happy. We had her sitting up in a high chair, with Lindsay and I on each side. She was playing with her toys, smiling and rocking back and forth. I’m sure the anticipation was all over my face. We were just sitting there waiting on something. We weren’t exactly sure what, but something. As Bentley chomped along on one of her toys, a new series of beeps started. The first few series of beeps didn’t elicit a single wince, but this series was different. Suddenly, B just froze. She stopped everything she was doing and just froze. Lindsay and I both locked eyes. It was like we were speaking to each other. We both telepathically said “She just heard that! Can you believe it? She just heard that! I love you. She just heard that!” The series of beeps stopped, and she went straight back to chomping away at her toys. So simple. What else is she going to do? When we switched to testing the other ear, we got a similar response, but not quite as obvious.
The beeps stopped. It was now time to say something. The room went so silent. Lindsay and I just froze. Neither of us said a thing. We didn’t realize we were supposed to. Haha. Finally I realized it and nudged Lindsay…Lindsay spoke….Bentley paused what she was doing. Her eyes turned up toward the sky. She turned her head toward Lindsay and said “Stop yelling at me mom!” hahahahahaha jk. She didn’t do that. She did pause, but she didn’t do anything crazy obvious. She stalled her chomp, like something weird was going on, but nothing crazy. At least not that I can remember. We did get response from her, but I don’t have the video of those first words. Not yet. It was taken with a fancy camera, and I’ll upload it once I get it.
After talking to her for a few minutes we wore her out. She passed out, and took a nap. During nap time we learned all about her new toys. The new processors, their functions, the colors, all the bells and whistles, it was fun.
As Bentley started to arouse, I thought, “will she startle to sound?” Babies do, why wouldn’t she? So I stuck her processor on and spoke softly. She moved. I took it back off. We let her calm down, and then we decided to try one more time. I told everyone to pick up their phone and start shooting, haha. Then I spoke, and she startled! Just like a little baby would. The video of it is perfect. She was spooked, startled, maybe a little scared. She perceived the sound of my voice, and reacted! That’s all I needed. The potential that exists is endless. I’m cautiously optimistic of the near future, but with Lindsay by her side, she’ll be awesome!
I’ll pull all the footage together soon, and throw up a few more pics. She’s really cute with her new ears. Thank you to everyone who has prayed for my angel over the last year. Thank you to the therapists, the doctors, the nurses, the teachers, everyone. I can’t thank everyone enough. We are so appreciative of all the prayers and support.
The Book of Bentley started a new chapter today. I foresee a few extra chapters as well. Let’s see where this next one takes us, shall we?
Jesus put his fingers in Bentley's ears last week, and she hears today. I just love it!
February 17th, 2014 is a day that will live in infamy……at least for us.
What a great weekend. You have no idea how awesome it was to have so many people with Bentley on their minds. Except for when we sang Happy Birthday to ken. Operation Lonely Girls was still the mission, but we had to make a few exceptions being it was Mercedes Marathon weekend. Saturday night was the spaghetti dinner. We met family and friends there, but I had to sanitize my hands after every person I shook hands with. Lindsay was still a little anxious going into the weekend. We experienced the same quarantine affect on Sunday morning during the marathon. We didn’t let anyone get near Bentley. It was kind of funny. Jessica, my sister ran the half-marathon for her, along with a few of her friends. They wore some super sweet “Team Bentley” shirts. I mentioned the two teams who were raising money for the Bell Center in Bentley’s name. They all did great. We really appreciate the effort and time so many people put into that event. I can’t believe so many people just offered to run really far up and down the streets of Bham. I love the Bell Center too, but….
Thank you so much for everyone who showed Bentley love this weekend. We really appreciate it.
Now, to the part everyone really wants to know, how was surgery?!!!!
It was kind of funny. If only you could have heard mine and Lindsay’s conversation on the way up to Bham on Friday. Our nerves were actually starting to get to us. We almost turned around and didn’t drive up until Sunday night, just because we didn’t want her getting a last second cold prior to surgery. We got a huge surprise on Sunday, and got some Facetime with Uncle Jarod. That was pretty special. We were pumped to see him before surgery.
Fortunately, we didn’t have to get to Children’s too early. We left the Villa de Shocka around 730am. Perfect timing. The surgery registration area was packed. We had to sit at a little kitty table as we waited to be called back. Our Outback pager finally went off around 945. We went back and got the usual questions. All 50 of them. I laugh, because Lindsay doesn’t like this part. Dr. Woolley came by, and many other people. I tried videoing as much as possible. Bentley must have known it was a big day, because she never cried or fussed a bit. Even though she hadn’t had anything to eat since Sunday night. They pried her from our arms around 1000am. Well, we knew at that point we had about 5 hours to wait. No worries, just 5 hours of my baby passed out with a tube shoved down her throat, her head cut open in two spots, two holes drilled in the base of her skull, and an insanely fragile electrode placed inside the most fragile seashell (her cochlea) I’ve ever known. No reason to worry, or get stressed, or sit there staring at the Outback pager hoping for an update.
Well, we tolerated it well. We were blessed to have both sets of parents around us. Quite a few friends stopped by as well. It was a great way to pass the time. However around the 5.5 hr mark, I was starting to get a little anxious. I decided that was the perfect time to shift to some actually work-work. That kept me occupied until Dr. Woolley appeared. He came bearing good news. The surgery went well. It was a huge success from their end. They just had to take things slow because of her size. It was great, we were so relieved. Unfortunately, he also said it would be another hour or two to wake her up. I’ve mentioned how rough anesthesia is on her before. She must have prepared for this, because although it took 2 hours for us to see her, she was almost completely awake.
When we walked through those doors and saw that bunny rabbit wrapped up on that gurney, I was just elated. “Thank you Lord!” I can’t begin to tell you the relief I had knowing I could see and touch her. She was a tad swollen, and had some big ole earmuff bandages on, but she was as precious as ever. The rest of the evening was basically Lindsay and me fighting over who got to hold her. We were obviously treating her head as if it contained two cracked eggs, but what do you expect? She was a little fussy for a while, but Lindsay was pooped. She crashed and I just couldn’t take my eyes off of B. She was so sweet laying there in the crib. Around 1130pm she started rubbing her feet on the blanket and smiling. All I could do was pray “Thank You! Thank you thank you thank you!” I watched her until she fell asleep around 1am. I think her big day finally hit her. I’m not sure it was long afterward when I passed out.
This morning, everyone was feeling better. We were discharged around 1pm, and headed straight south. Bentley was awesome. She never whined or complained. She made some sweet little coos, but that’s about it. Back home we realized how stinky and smelly we all are. I didn’t take my shoes off for 36 hours. Right now we are all debating where the hospital stink is coming from. Is it from Bentley’s headband and dressing change, or is it from me? Lindsay, as a source of the stench, isn’t an option. Bentley has to wear these funny headbands to hold on the dressings. The incisions are right behind her ears, and her ears are draining pretty good. All in all, the surgery couldn’t have gone any better.
Thank you to everyone who threw up some prayers. I can’t thank you enough. Bentley has a couple of new knots on her head, where the implants sit, but otherwise seems back to her old self. We’ll head back up for a post-op appointment next week, and we’ll try turning them on February 27th! It is so hard to believe she’s got them. This has been such a milestone to achieve. A milestone that holds so much potential. Thanks again for all of the support and prayers. I’ll let you know how the turn-on day goes.
Not a lot to talk about, other than we are 1.5 weeks away from Bentley’s implants! Sorry if the dates confused anyone. Originally we were told January 27th. It changed. I’m praying it was a blessing in disguise, like so many other things we’ve experienced lately. –As Lindsay was proofreading my work, she notified me of the blessing this was, because we would have most likely been caught in the Polar Vortex that consumed Birmingham on the 28th- Surgery is now on February 17th.
Since we are two weeks away, the quarantine has begun. Operation Lonely Girls has commenced. Bentley can’t get sick for the two weeks prior to surgery. We’re cutting it pretty close as we spent a good chunk of our Saturday in the ER because she spiked a temp of 105. It was not fun. Bentley was feeling so bad. I know kids get sick all the time, at least the ones in the Greater Bryant-Clark family do. As a result everyone is always fighting off something. Well, with B it’s hard to tell who or what she got. She had her 15-month shots on Thursday, but also spent time with Momma B for the first time in a while and Momma B has had every bug imaginable lately. We also had our first dose of what it’s like to have a baby that really doesn’t feel good. Last night B cried for like 3 hours straight. That has literally never happened. Not even close. She cries for 5 seconds max. I know, we’ve been spoiled. We passed on family lunch yesterday as our first missed event due to Operation Lonely Girls. Instead of eating a huge spread with everyone, we ate a sandwich, and then went to Sam’s where I carried B in the Bjorn and was under executive order not to touch ANYTHING! 5 min in I was walking around looking for hand sanitizer because I had touched the tablet computers and the paddleboards. I just forgot the mission. Don’t worry, I didn’t touch B again until I hit the hand sanitizer row and disinfected….Sorry whoever bought the 3 liter bottle missing one squirt.
We’ve just about made a decision on the implants Bentley will receive. Nothing like waiting until the last second. I swear Google has been holding out on me. In the last 72 hours I’ve discovered articles, videos, and tech sheets that I haven’t uncovered in the last 12 months. Where did they come from? I have no idea, but they have been a huge help. Mostly they’ve reinforced the brand I am leaning toward. But they have also brought up great information about the other companies that have brought things back to a very tight race. There’s a good chance we will have made this decision before this update goes to print. No pressure huh? Just picking an electronic device to implant in my child’s head that will hopefully stay with her for life and provide her the perception of sounds and make, possibly, the single largest impact on her future development as a kid. No biggie.
It’s crazy to think where we’ve been over the last year. January 30th was the date we discovered Bentley is deaf. It has been a busy year. If someone had told me we could experience a year like this, I would have told them they were nuts. So many changes for the Bryant family. Some good, some bad. I’m just so thankful Lindsay and I could experience it together.
I’ll go ahead and wrap this bad boy up. Shortest post yet, I believe. I’m going to end by asking for something. Please support the Bell Center at the Mercedes Marathon. A very famous blind and deaf girl will be on hand. She is super cute. Come out and meet her in person (If Operation Lonely Girls doesn’t have her on lock-down). We are blessed to have two teams running in Bentley’s name. I honestly can’t find a link to one of them, but I just did. They both support the same amazing place, The Bell Center. So, thank you to Team Bentley and Team Achilles’ Bells’s. (The green means you can click on it and go donate if you are super generous and actually care like that) Team Bentley is a group of some great friends who we love very much from our days in Hoover. Team Achilles' Bells's is a team who runs for the Bell Center and one of the runners has a child with cochlear implants.
Thank you for keeping up with B. Please throw up a quick prayer on Feb. 16th, because you’ll probably still be asleep when she goes to surgery on the 17th. We’re praying for God to guide Dr. Wooley’s hands, and a quick recovery. I’ll keep you posted on her progress. Then, I may share something when we turn them on, on Feb. 27th!!!
Every morning I wake up and start the routine I’ve mentioned a couple of times. From 6-7am I am either playing with B and starting to feed her, or I am sitting next to her crib eating breakfast and just looking at her and thinking. The part I dared not talk about, until now, is what I was thinking about.
What a year! So amazing. I believe it may have been the most eventful year I’ve had yet. It’s just so crazy to think back on it. So much to enjoy remembering. So many doctor/therapy visits. So many tears. So many friends. Lots of babies born in The Greater Bryant/Clark family.
I know mine and Lindsay’s opinions of the past year differ greatly. However, they both come together at one thing. We are incredibly thankful for all the family and friend support we have had. We are thankful for the love and grace we know our Father has blessed us with. We have been humbled more times than I can count. All I can sum it up with is, wow, it’s been an amazing year.
Bentley got to celebrate her birthday twice this year. Lucky lucky. Good thing she won’t remember that. Giving a girl two birthday parties will never be this cheap. Jessica surprised Lindsay with a party for B a couple weeks before her real birthday. Fortunately, Jess is the worlds greatest event planner and made it work out so perfect, Lindsay got over her anxiety for having a little party here in Dothan. So, we had B’s second 1st birthday party two weeks ago. What fun it was! We had a good time. B ate a good bit of cake. She didn’t make an epic mess of the cake, but she did pretty good. On her real birthday, October 30, we took her to a fancy night out at Cracker Barrel. It was so good. We fed her a boat load of veggies. I know, veggies are boring.
We made our first trip to the peanut festival. It was great. We had the world famous corndogs, roasted corn on the cob, kettle corn, boiled peanuts, funnel cake, polish sausage, homemade chips, and cotton candy. What a day! Bentley got to pet goats, lamas, and a Yak. She was laughing through the whole thing. We also got her first picture on a John Deere. Those new tractors are so stinking nice. I was in heaven. We also did the peanut parade. Did you know it lasts 2 HOURS?! We were expecting 15 min. Due to our lack of planning we didn’t stay the whole time, but had a blast. Our Bell Center family was there. They always told us they love the Peanut Festival, I just didn’t believe them. But it’s true. They love it. And the whole crew was there. I think the only person missing was Miss Betty Bell herself.
Bentley’s cousin Willie Joe came to town a couple of times. Elena and William made the trek to Dothan while Jarod is out in So Cal training up for his first deployment. We had so much fun with them here. They went to the festival with us, and Bentley and William got to get loved on by everyone. I love seeing my little chunk of a nephew. Bentley also got to meet another new cousin, John Clark. He’s a cute little stud. In this family our kids are going to have so many cousins, I’ll be surprised if they remember everyone’s names.
Enough with the fun, how bout on to the real update? So I mentioned we had a genetics appointment. Well, we may have actually learned something. I’ll try not to butcher it too much. It appears, Bentley has a mitochondrial (powerhouse of the cell) disorder of some sort. They suspect the culprit to be a particular gene, C10orf2, that codes for two proteins. These proteins are called Twinky and Twinkle, due to their structure looking like shiny stars. They assist the mitochondria in creating usable energy for the cell. Which would help account for the general weakness she exhibits throughout her skeletal muscles.
Anyways, they suspect some sort of mutation to this gene creating a disorder known as Progressive External Opthamolplegia. I’ll let you click the link to read more about it. Like I said, this is not 100%, but the geneticists are predicting this to be a possible diagnosis. The confusing part, if you read, is that this is typically a disorder with more of an adult onset of symptoms. Bentley appears to have manifested these attributes a little quicker. This may not be the only disorder thing she has, and doesn’t account for all of her symptoms, but it may be a contributing factor.
The frustrating part comes in the form of further testing. The docs want to perform Whole Exome Sequencing (WES). Another link for you to click (it's a blog, but informative). Another WES link (Never source Wikipedia, but this isn't for school so, tuff)This stuff is getting too complex for me to explain in typing. Unfortunately, this isn’t a test/procedure that is covered by our insurance yet. BCBS has actually just finished a draft policy on this group of testing, and you guessed it, they are not going to cover it. They think it’s too experimental at this point. If you want to read the draft policy you can click here. It was actually finalized before I could post this. So, now it's final. For the record, I am not complaining about any policy/coverage decisions by BCBS, I am only trying to educate you on what we are discovering as we continue on our journey. Our other genetic option is to individually test suspected genes, one at a time. This is very time consuming, and you guessed it, not always covered by insurance. I’m very thankful our Geneticist is very proactive, and is appealing what he can appeal. He has recommended we don’t jump the gun and just start breaking the bank on a boatload of tests until we extinguish all options. He is also reaching out to different labs and programs throughout the country to help find someone that can offer some form of assistance here. Surprisingly enough, there aren’t too many labs in the country that perform this sort of testing. However, there are some programs out there that can provide many of the services we are seeking at some reduced costs, and also have more experience convincing insurance companies to cover some things. I’m guessing there are some grants and journals wanting some dude in a lab to get some cool weird issues to study like the ones we’re dealing with. I know one place our doc is pursing is at the National Institutes of Health (NIH). There’s lots of grant money flowing out of that place. One program is new, and actually at UAB. I happened to receive an email about it in the UAB Magazine just this morning. It’s called the Undiagnosed Diseases Program.
Just so you know, the different colored words mean you can click on them and go read about the thing I’m talking about. The Undiagnosed Diseases Program sounds like it could be promising. We literally just started looking at this yesterday, so don’t let me get too ahead of myself.
That’s about all I can think of right now. B had a bout of pneumonia towards the end of last week, but fortunately this time I let Lindsay make the calls and go see a doctor. We caught this one before it could overtake her and land us back in the hospital again.
Bentley is going back in the sound booth tomorrow (November 21). We’ll see how she does. These sound booth visits are big major determinates in the cochlear implant journey. Say your prayers, please. Lindsay’s dad is going with her and won’t hesitate to ask the hard questions. Not that Lindsay does. She gets it honest.
Welp, if I think of anything else, I’ll let you know. Thank you so much for continuing to follow my angel as she grows and experiences this world like none of us do. We appreciate all the love and attention she gets from family and friends. Her 10 little fingers are just becoming so much more adventurous and brave. She eats cheese puffs like its her job. She’s reaching up to the coffee table and starting to pull up on it. She sits up in her booster seat like a big girl and just reaches around the table looking for more food and/or toys. I’ll throw up some vids of her eating. It’s so cool. Lindsay places all her cheese puffs in the cup holder, and in the time it takes her to put on shoes, Bentley can take down an entire serving (16 pieces). Today she discovered Brunswick stew, and apparently loves it (must be a Bryant). And she discovered the butt bread at FireBirds. She loved it too. Probably will love that Durango burger once she has all her teeth. Did I mention she has two bottom teeth coming in? It’s so cool, she just rubs on them all day long. Then she’ll put her fingers in your mouth and rub on your teeth. I think she kind of realizes that my teeth feel like big versions of her teeth. I just love her. She’s even starting to clap her hands. The other night she threw her hands up, like to say “pick me up.” We have always lifted her hands up toward us before picking her up, in an effort to teach her that. She’s catching on! I’m so proud.
OK, for real now. I’ll let you go. Thanks for reading. Will update again soon. Thank you. Love you. God bless you. War Eagle!
“Come, let us sing for joy to the Lord; let us shout aloud to the Rock of our salvation. Let us come before him with thanksgiving and extol him with music and song.” Psalm 95:1-2 NIV
We put Bentley on her couch and let her feel music with a good beat. It's really cool. She's starting to show reaction to it and get excited when she feels it. We're getting better footage every day. Working on an actual good video, with lots of fun stuff in it. The end of this one is the cutest.
If you can't see the older posts, look through the archives to find out how it all started and get up to speed. To receive email notification of updates, click here.
I will be writing most of these. Justin, that is, the dad. Lindsay will provide her input.