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.
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.
Bentley and cousin William 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.
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.
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.
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
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.
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