I sort of forgot to update you all on how those doctors appointments went. Sorry.
Genetics went well. Again, they are so thorough. It's actually a calming office. As far as the lab results go, most of them have come back normal. We are still waiting on a test that checks for 66 known genetic causes for hearing loss, called the OtoSCOPE. We are also waiting on a lab that checks for some kind of Mitochondrial disease. Specifically they are using the muscle tissue to analyze the electron transport chain (ETC) within the mitochondria. Since I took cell biology a while back, I don't remember much. But 6th grade science will never let me forget the Mitochondria are the "powerhouse" of the cell. A problem with the ETC impacts the ability to produce cellular energy from glucose, known as ATP. That's as detailed as I can remember right now. However, you can imagine there are a multitude of complications that can arise if the cells are not able to produce enough usable energy. So, that's where we are on the lab tests. In the event everything comes back normal, we do have options. The docs didn't go into them yet, to prevent overwhelming us again until it's necessary. Further steps will likely involve both Lindsay and I having blood drawn to analyze against Bentley's, and a few more genetic mapping things. The docs kept it brief. Sorry, I don't know more.
Genetics went well. Again, they are so thorough. It's actually a calming office. As far as the lab results go, most of them have come back normal. We are still waiting on a test that checks for 66 known genetic causes for hearing loss, called the OtoSCOPE. We are also waiting on a lab that checks for some kind of Mitochondrial disease. Specifically they are using the muscle tissue to analyze the electron transport chain (ETC) within the mitochondria. Since I took cell biology a while back, I don't remember much. But 6th grade science will never let me forget the Mitochondria are the "powerhouse" of the cell. A problem with the ETC impacts the ability to produce cellular energy from glucose, known as ATP. That's as detailed as I can remember right now. However, you can imagine there are a multitude of complications that can arise if the cells are not able to produce enough usable energy. So, that's where we are on the lab tests. In the event everything comes back normal, we do have options. The docs didn't go into them yet, to prevent overwhelming us again until it's necessary. Further steps will likely involve both Lindsay and I having blood drawn to analyze against Bentley's, and a few more genetic mapping things. The docs kept it brief. Sorry, I don't know more.
Playing with her feet before lunch. As you can imagine, having results return as normal is great. Of course at the same time we want answers. I am someone who always wants to understand the why. Unfortunately, it may end up that we don't have a definite answer. That is incredibly frustrating and even more fascinating. We have been told that just because we find nothing, that doesn't rule out some of the muscular dystrophies or other issues. It just means we can't find the known genetic markers. However, I'll take a lot more normal results and give thanks! Some minor abnormality at the cellular level, in addition to the hearing and vision problems is enough for me. We'll keep praying that's all we have to deal with.
As I mentioned previously, we are off the oxygen. All of that equipment is being picked tomorrow. Bentley was a whopping 12 lbs. at the genetics appt. That's huge in our world. We are still doing the night tube feeds but are slowly reducing the amount we give her, thanks to better intake of real food during the day. We are hitting all our caloric targets. Including me. Fatherhood can pack it on!
We are on hiatus from The Bell Center for a few weeks, so I am doing our activities at home. She is almost holding her head up on her own. Her abs are getting stronger too. She is getting better and better at sitting up. We practice many times per day. She’s figured out that when we are sitting up eating, when I tap her chin it means “open up a spoon is coming.” That’s pretty cool. She also knows she does not like green beans. Baby food green beans taste terrible, so I don’t blame her. She still loves playing naked and holding her feet! It’s just the cutest thing ever, maybe even cuter than a puppy.
Thanks to Mimi and Pop for watching B over the weekend. We had our first weekend where both of us were away. It was nice to spend some time together without worrying about the next feeding or changing a diaper. We went to Albany, GA for the awesome wedding of Wadley and Carrie. Can't wait for them to have a kid to so we can go to Disney World together. No pressure you two;)
I think that's it for now. For those of you who are interested, you can now subscribe to an email list and I will send you an email notifying you of when I make a new update. This way you won't have to randomly check the site. I may get over my blogophobia when we move, and share it on Facebook, but don't bank on it. This is nothing fancy, so it will be nothing more than an email with a link in it. There will be no spam or junk in it. Although, SPAM is tasty. Click here to be added to the list. You will receive the emails from [email protected]. Keep praying, Bentley needs it and Lindsay needs it. God answers prayers even if it's not in the way or time we are expecting.
As I mentioned previously, we are off the oxygen. All of that equipment is being picked tomorrow. Bentley was a whopping 12 lbs. at the genetics appt. That's huge in our world. We are still doing the night tube feeds but are slowly reducing the amount we give her, thanks to better intake of real food during the day. We are hitting all our caloric targets. Including me. Fatherhood can pack it on!
We are on hiatus from The Bell Center for a few weeks, so I am doing our activities at home. She is almost holding her head up on her own. Her abs are getting stronger too. She is getting better and better at sitting up. We practice many times per day. She’s figured out that when we are sitting up eating, when I tap her chin it means “open up a spoon is coming.” That’s pretty cool. She also knows she does not like green beans. Baby food green beans taste terrible, so I don’t blame her. She still loves playing naked and holding her feet! It’s just the cutest thing ever, maybe even cuter than a puppy.
Thanks to Mimi and Pop for watching B over the weekend. We had our first weekend where both of us were away. It was nice to spend some time together without worrying about the next feeding or changing a diaper. We went to Albany, GA for the awesome wedding of Wadley and Carrie. Can't wait for them to have a kid to so we can go to Disney World together. No pressure you two;)
I think that's it for now. For those of you who are interested, you can now subscribe to an email list and I will send you an email notifying you of when I make a new update. This way you won't have to randomly check the site. I may get over my blogophobia when we move, and share it on Facebook, but don't bank on it. This is nothing fancy, so it will be nothing more than an email with a link in it. There will be no spam or junk in it. Although, SPAM is tasty. Click here to be added to the list. You will receive the emails from [email protected]. Keep praying, Bentley needs it and Lindsay needs it. God answers prayers even if it's not in the way or time we are expecting.
She still looks so tiny.
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