November 19, 20223 yr 3 hours ago, Ed Beans said: ¿Me llamaste? por favor mensaje privado profeta(dos uno cinco), por favor asegúrese de poner soy un imbécil en la línea de asunto
November 19, 20223 yr 8 minutes ago, wholesale_Melvin said: por favor mensaje privado profeta(dos uno cinco), por favor asegúrese de poner soy un imbécil en la línea de asunto No. (traduccion en ingles: "No.")
November 20, 20223 yr Chickie went on FB and said i had to see this mustang from Fred Beans. When you find out your wife follows f'ing paco.
November 20, 20223 yr 3 minutes ago, wholesale_Melvin said: Chickie went on FB and said i had to see this mustang from Fred Beans. When you find out your wife follows f'ing paco. Ed Beans
November 20, 20223 yr 13 hours ago, wholesale_Melvin said: Chickie went on FB and said i had to see this mustang from Fred Beans. When you find out your wife follows f'ing paco. 13 hours ago, paco said: Ed Beans ¡Deja mis frijoles fuera de sus bocas!
January 21, 20232 yr 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. ❤️
January 21, 20232 yr Author I’m literally ugly crying tears streaming down my cheeks reading this. From one parent to another - I totally get how scary this was for you. We still have concerns and probably always will for our daughter - without getting into the gritty details, because I didn’t carry her or have any control over her environment while she was in the womb, there are knowns and unknowns and many won’t reveal themselves for years. I spend every minute of my existence loving, advocating, nurturing, teaching and just making life as normal and as happy as I can or know how. It’s stressful a lot of times. It feels very isolating often. But it’s the greatest and most fulfilling job ever. I didn’t mean to make that about me but man I feel like I needed to share that. Holy crap… how freaking awesome that Hudson has bucked the odds!!! I mean F… it’s like winning the lottery. All of the worry and sleepless nights.. I imagine you spent so many hours trying to determine if she could hear or had symptoms of this syndrome. And then you focus so much on it.. what’s normal development and what is an indication of this scary thing your child will have to face? I am sooooo freaking happy for you guys!! Please keep us updated. I feel like our daughters are companions here. And thank you for having the courage to share your story. We often suffer in silence when sharing helps us realize we are all going through a thing. I cannot wait to see pics of the new little one and Hudson as a big sis ❤️
January 21, 20232 yr Author PS - Ellie’s formal name is Helen. Both our daughters are warriors much like Helen Keller.
January 21, 20232 yr 9 minutes ago, binkybink77 said: I’m literally ugly crying tears streaming down my cheeks reading this. From one parent to another - I totally get how scary this was for you. We still have concerns and probably always will for our daughter - without getting into the gritty details, because I didn’t carry her or have any control over her environment while she was in the womb, there are knowns and unknowns and many won’t reveal themselves for years. I spend every minute of my existence loving, advocating, nurturing, teaching and just making life as normal and as happy as I can or know how. It’s stressful a lot of times. It feels very isolating often. But it’s the greatest and most fulfilling job ever. I didn’t mean to make that about me but man I feel like I needed to share that. Holy crap… how freaking awesome that Hudson has bucked the odds!!! I mean F… it’s like winning the lottery. All of the worry and sleepless nights.. I imagine you spent so many hours trying to determine if she could hear or had symptoms of this syndrome. And then you focus so much on it.. what’s normal development and what is an indication of this scary thing your child will have to face? I am sooooo freaking happy for you guys!! Please keep us updated. I feel like our daughters are companions here. And thank you for having the courage to share your story. We often suffer in silence when sharing helps us realize we are all going through a thing. I cannot wait to see pics of the new little one and Hudson as a big sis ❤️ Your words always hit home (and so do Paco’s). I’m so happy for you both that you have your daughter and that she is clearly with the best parents ever. Let’s keep the nest at the top of these boards from now on. I find it hilarious that we took the same trip within the same year with a child almost the same age. People look at me like I’m nuts when I told them we drove Hudson through half of Ireland. 😂
January 21, 20232 yr Author 12 minutes ago, hputenis said: Your words always hit home (and so do Paco’s). I’m so happy for you both that you have your daughter and that she is clearly with the best parents ever. Let’s keep the nest at the top of these boards from now on. I find it hilarious that we took the same trip within the same year with a child almost the same age. People look at me like I’m nuts when I told them we drove Hudson through half of Ireland. 😂 Yessss!! Like we’re best friends now right? But seriously besides our friend status I agree let’s keep this on the front page - for our daughters and future Eagles parents who need this space. 🦅🦅🦅💚💚💚 And truly - thanks again for sharing this. I personally needed this today.
January 21, 20232 yr 52 minutes ago, binkybink77 said: PS - Ellie’s formal name is Helen. Both our daughters are warriors much like Helen Keller. My great Aunt’s name was Helen as well and one of my favorite people growing up. She was a professional golfer way before they made any money. Philly golf HOF! Philadelphia
January 21, 20232 yr 7 minutes ago, binkybink77 said: And waiting for Grammy and PopPop My goodness she is adorable. My guess is she’s running around like crazy now? We lost track of the HUD for 1.5 seconds at a brewery last weekend and she ran into the employee only area and started ripping up W4s and every piece of paper she could find.
January 21, 20232 yr Author 1 minute ago, hputenis said: My great Aunt’s name was Helen as well and one of my favorite people growing up. She was a professional golfer way before they made any money. Philly golf HOF! Philadelphia I love this!! Both of our maternal Grandmothers were Helen - it’s a great strong family name. I love old and classic names.
January 21, 20232 yr Author Just now, hputenis said: My goodness she is adorable. My guess is she’s running around like crazy now? We lost track of the HUD for 1.5 seconds at a brewery last weekend and she ran into the employee only area and started ripping up W4s and every piece of paper she could find. Ellie’s not waking yet but she can get all over crawling! She’s in PT to help with it. She has low muscle tone so that’s why she’s delayed. But girlfriend can stand and get anywhere she needs to in her own way 💚
January 21, 20232 yr @binkybink77 and @hputenis ... thank you for sharing your kids.... and others posters as well. Makes me happy to see happy little ones. Still waiting on grandkids..... so I live through you guys, and some at my church. Week before Christmas I bought small Snoopy dolls and gave them to all the regular attendance little ones..... Told them all I work for Santa. The best part for me was this one little one that had brought another stuffed animal with her...... she had her gift and the one that she brought "talking" to each other through the entire service.
January 21, 20232 yr 12 hours ago, 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. ❤️ That’s an incredible story - thanks for sharing.
January 21, 20232 yr Author @Steve 17 that is such a kind thing for you to do! I hope you are blessed with grandkids soon. Costco trip… Go Birds! 🦅🦅🦅
January 21, 20232 yr Glad that your daughter is having progress and chances at beating those odds. Fingers crossed that positive news continues to come her way over the years. Hopefully the only part of Usher she gets in generational talent!
January 25, 20232 yr I just want to say to you guys @ hputenis and @binkybink77 how proud I am to read this. These children are absolutely adorable. They didn't ask to be here yet you both show so much love for their care and growth. Keep up the good work!!!! I can only imagine how challenging it is. As you know I was blessed with 2 healthy children but not so healthy a husband. I did the best I could by never leaving him and being supportive and understanding of his addictive issues. I swear to God my kids are better off today, then if they were raised by both of us separately. I'm convinced it would have been a disaster. So, hang in there. I can never get enough pics; they are both so special. You already know that, and I again, can't express how much you are making the best life possible for these little people. Great work. Love, Di
January 28, 20232 yr @paco @binkybink77. you guys still have that beach house for rent? the hunts are looking for a beach house in june!
January 28, 20232 yr Author 13 hours ago, mr_hunt said: @paco @binkybink77. you guys still have that beach house for rent? the hunts are looking for a beach house in june! 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!
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