January 30, 20232 yr On 1/20/2023 at 10:01 PM, hputenis said: Daughter #2 arriving June 9 (6/9 hahaha). Her name will be Hayden and we went through IVF to make sure she will be born healthy. I’ve got a crazy story as to why we went through that. Hudson (daughter 1) was born with Ushers Syndrome 1 (it’s what Helen Keller had). It was a foregone conclusion that she would be born deaf and be blind by the time she was in her teens. She had a 100% chance to be born deaf. Apparently my wife and I were carriers and didn’t know it until she was pregnant. The chances of 2 people being carriers of this are close to zero. Even then, if you conceive naturally, there’s only a 25% chance that the baby will be born with this disease. Unfortunately for us at the time and after my wife had amniocentesis, we found out that Hudson has this disease. It was the worst day of our lives when we found out, but we both knew that no matter what we would love this little girl more than anything in the world. When she was born, the nurse thought she detected reactions that Hudson heard something, but those tests are never fully accurate. Fast forward 1 month after she was born, and we had already scheduled cochlear implants with North Carolina’s best team of infant audiologists. She had her first hearing test and she somehow passed 100%. Mary and I still held out hope but didn’t celebrate because we kind of knew the inevitable. However, here we are 18 months later. We have met with the best geneticist team in NC and they think that we might be the first case of some sort of mutated gene that looks like Ushers (not mine. My gene is all Fed. But my wife might have this non-malignant mutated gene that looks and appears as Ushers). We have most recently been told by both audiologist and geneticist that we have reason to believe that our daughter might be the first case of Ushers 1 ever that hasn’t been born deaf and that we have reason to believe that she will never suffer the effects of the disease. @binkybink77 @paco I kind of wanna tag everyone I like at this point but I’ll forget people. ❤️ Sorry for the late reply. Ask schmoopie, I've been getting crushed at work these days and have been a wreck, which is why I havent been on much lately. This is absolutely awesome. I can't fathom what that must have been like for you guys. All a dad wants to do is to protect their little girl so to get that news before she was born must have been (for lack of a better word) devistating. So to get this good news must have felt like hitting the lottery. I can't express how happy I am for you. Mostly be cause I no do words good.
January 31, 20232 yr On 1/28/2023 at 1:25 PM, binkybink77 said: Unfortunately no but thank you for thinking of ours! We sold that to buy our current home and turned our townhome into a long term rental. We recently sold that and are trying to buy another shore property with the proceeds. We were under contract on a cute little place but the inspection was BAD. First floor rotted and sagging and needs a major rehab on top of new siding and new roof. Had to pull out (that’s what he said). But I’ll check back in with you if we find something else! thanks! we wound up booking an airbnb in rehoboth beach last night. is that the ghey one? if it is, i'll have to watch the last of us episode 3 a few more times to get acclimated. anyway, thanks for the reply!
February 13, 20232 yr 18 hours ago, binkybink77 said: The cutest cheerleader for her first Super Bowl 🦅 They still make Carebears? That's awesome.
March 2, 20232 yr Author Ellie has a new friend. His name is Batman Kelce. Not sure if he will be ready to go at Center in time for the season.
March 3, 20232 yr 22 hours ago, binkybink77 said: Ellie has a new friend. His name is Batman Kelce. Not sure if he will be ready to go at Center in time for the season. Adorable! Batman Kelce and Ellie are adorable too!
March 14, 20232 yr When right before baby girl was put down for the night she looked me dead in the face and said "Uh-oh!" She didn't go in her diaper. She didn't lose her stuffed animal. She was just fixated on my face. And was concerned.
March 14, 20232 yr 1 hour ago, paco said: When right before baby girl was put down for the night she looked me dead in the face and said "Uh-oh!" She didn't go in her diaper. She didn't lose her stuffed animal. She was just fixated on my face. And was concerned. You aren’t used to that by now?
March 15, 20232 yr On 3/14/2023 at 6:52 AM, paco said: When right before baby girl was put down for the night she looked me dead in the face and said "Uh-oh!" She didn't go in her diaper. She didn't lose her stuffed animal. She was just fixated on my face. And was concerned. okay Joel
March 21, 20232 yr Author I had to share you guys.. ELLIE IS WALKING we are so proud and relieved and terrified Here she is reading the instructions to Daddy and helping him build a counter stool for her
March 21, 20232 yr 14 hours ago, binkybink77 said: I had to share you guys.. ELLIE IS WALKING we are so proud and relieved and terrified Here she is reading the instructions to Daddy and helping him build a counter stool for her Helping him ? Looks more like Dad is helping her.
March 21, 20232 yr 26 minutes ago, Steve 17 said: Helping him ? Looks more like Dad is helping her. I just do what the women in my life tell me to do.
March 21, 20232 yr 8 minutes ago, paco said: I just do what the women in my life tell me to do. Smart lad. The car thing still bothers me but....... Smart lad.
March 21, 20232 yr 21 hours ago, binkybink77 said: I had to share you guys.. ELLIE IS WALKING we are so proud and relieved and terrified Here she is reading the instructions to Daddy and helping him build a counter stool for her
April 3, 20232 yr 10 hours ago, paco said: She’s such a cutie! How is she doing? She's doing great. 😁 We have our 6 month appointment with her team of audiologists tomorrow, but at this point, it's being communicated to us that it's just a formality. Daughter #2 due June 9! Will update with pics!
April 3, 20232 yr 23 minutes ago, hputenis said: She's doing great. 😁 We have our 6 month appointment with her team of audiologists tomorrow, but at this point, it's being communicated to us that it's just a formality. Daughter #2 due June 9! Will update with pics! That's awesome!!!
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