家庭会议 2023

2023 PA会议注册


雷切尔g ^,en.

家庭故事 – 雷切尔g ^,en.

Rachael G.

我的名字是雷切尔,,en,岁,有丙酸血症,,en,我住我的妈妈和爸爸,,en,一周的三天我在工作中心为残疾人和上工作,,en,天,我走在锦龟工作,,en,我爱我的两个职位,但锦龟是我的最爱,,en,我得到的油漆和做的是向公众出售艺术品等,,en,我喜欢阅读,去我的电脑上,,en,我参加我的地方特色休闲项目,事件,,en,我们去打保龄球,,en,有舞蹈和戏剧出席,,en,我最喜欢的假期是在迪斯尼世界和迪斯尼游轮,,en. I am 40 years old and have propionic acidemia. I live with my mom and dad. Three days of the week I work at a work center for the disabled and on 2 days I go to work at the Painted Turtle. I love both my jobs but the Painted Turtle is my favorite. I get to paint and do other artwork that is sold to the public.

I love to read and go on my computer. I attend events at my local Special Recreation Program. We go bowling, have dances and attend plays.

My favorite vacations are at Disney World and the Disney Cruises. 迪斯尼是如何帮助我与我的特殊的习惯非常好,,en,瑞秋g ^,,en.

Sam W

Sam W.

是,bs

Sam W.

Sam was born a week and 4 days late. Everything about his birth was perfectly normal unlike his older brother. I had the birth I wanted; he was breastfeeding well. For 3 days, life was perfect. Then, we got the phone call. His newborn screen had elevated C3. He had to go to the ER immediately. He did not have any symptoms at this point, so we assumed it was probably just a precaution. The tests at the ER showed elevated ammonia, hypoglycemia, and elevated ketones. He was then admitted to the Children’s hospital. After 5 days, we had the diagnosis of PA. He was discharged and stayed out of the hospital until 7 months old. From 7 months to 18 months, he was hospitalized 9 times for illnesses, exhaustion, and constipation. 大多数访问只有几天的. After 2 rough hospitalizations, 山姆很害怕任何女性其他的比我 (we assume because most nurses and phlebotomists were female). That’s when we decided to have a gtube placed. It was the best decision we ever made. He is now 3 and has not been hospitalized since the gtube surgery. Thanks to the newborn screen, he has never had a crisis. He is where he should be cognitively. Physically, he has hypotonia. He had to have therapy to help him learn to crawl and walk, but he still managed to walk by 18 months. In addition to the hypotonia, his energy levels are noticeably less than kids his age. During his yearly heart exam, 他被发现有一些迹象指向性心肌病的未来发展. 这是为时尚早,现在做任何事情会这样, we are just monitoring that.

总体, Sam is a happy and thriving 3 year old. He is all boy and loves guns and superheroes. At the same time, he can be very sweet and loving. He also loves to eat especially chips and anything fried! 我们非常感谢他和所有的医生和朋友谁帮助我们通过我们的旅程至今. 山姆只是做是因为我们的PA社会,他的精彩代谢的医生以及. 不管什么样的未来持有他,我们将继续信任神,依靠他度过这段艰难时期让我们.

That’s Sam’s story. Thanks for all you guys do to help with PA.

基督教中号.

基督教中号. – 更新Febrary 2019

基督教中号.

基督教中号.

基督教, 也称为CJ, 是一个爱玩的五岁. 他喜欢听音乐, 舞蹈, 唱. 他最喜欢的活动包括与他的妹妹玩耍,观看YouTube视频. 基督教是在全天幼儿园和喜欢与他的朋友交往. 基督教在学校参加瑜伽俱乐部,他在体操参加, 网球, 魔术类, 和骑马穿过公园区. 他喜欢旅行,他的最爱逛的地方是大烟山.

基督教的姐姐是通过新生儿初筛诊断为丙酸血症, 因此,我们已经把危机管理计划的地方为他生. 中 48 他出生的时间, 我们接受了他的PA的诊断. Currently, 基督教吃 11 克蛋白质, 饮料Propimex-2, 并每天服用维生素. 我们似乎总是在流感季节在医院结束了, 但比其他的基督徒一直是非常幸福和健康的小男孩会议所有他的里程碑.


过去的故事 – 基督教 – age 3

基督教

基督教中号.

基督教, 也称为CJ, 是一个三岁跳舞机. 他喜欢听音乐,并有舞会在我们的厨房和地下室. 他是党的生命,始终使人们微笑. CJ参加学前教育一周两次,也参与足球和体操. 在家, 他喜欢跟着他的姐姐身边,努力发挥什么她是打. 他的超级英雄的玩具往往是对抗芭比娃娃. 像大多数其他三岁孩子, CJ爱汽车, 卡车, 他最喜欢的电视节目是爪子巡逻.

 

玛雅中号.

玛雅中号. – 二月更新 2019

玛雅中号.

玛雅中号.

玛雅是一个九岁的心上人. 她喜欢观看YouTube视频,并制作自己的影片为她MayaTV通道. 玛雅爱使煤泥,听她的iPod音乐. 她还喜欢旅行,与她的家人去度假. 玛雅是三年级和爱读书, 写草书, 和解决问题的乘法. 她加入了她的服务学习俱乐部在学校和体操参加, 魔术类, 网球, 戏剧, 和骑马穿过公园区.

玛雅从医院回家后确诊为丙酸血症. 我们很幸运,有通过新生儿初筛的快速诊断和避免任何代谢危机. 玛雅消耗 13 克蛋白质口服每天. 她喝Propimex-2,并采取多种维生素. 总体, 玛雅是一个快乐,健康的小女孩谁使每个人都笑着跟她的性格幽默.


玛雅 – 7 years old

玛雅中号.

玛雅中号.

玛雅是一个7岁, 有活力, 和热闹的小女孩. 目前,她是一年级,其中她最喜欢的科目是电脑课和体育课. 玛雅热爱旅行. 她最喜欢的旅游地点是任何涉及一个海滩和阳光. 她在整个夏天基本花费在她的祖父母的瑜珈熊露营地. 她喜欢“驾驶高尔夫球车”, swimming, fishing, 并试图捕捉青蛙. 玛雅喜欢尝试所有活动. 她曾参与过芭蕾, 嘻哈和水龙头类. 她一直在乐高俱乐部, 疯狂科学家俱乐部, 烹饪俱乐部, 艺术俱乐部. 她还一直试图体操和戏剧. 玛雅的喜爱爱好包括制作自己的视频,并与她所有的娃娃玩具玩.

玛雅是通过她的新生儿初筛确诊为丙酸血症. 随着早期检测, 我们能够避免任何重大危机. 目前玛雅消耗 13 克蛋白质口服和饮料Propimex-2每天. 她是不是所有她的医生的约会的忠实粉丝, 但她明白需要他们保持健康.

 

Scarlett Camille

Scarlett Camille 4/5/2006-11/21/09

The most wonderful thing in the world happened on April 5th, 2006 … you were born….Scarlett Camille.

斯嘉丽Since then life was changed forever in a very special way!

There’s so many things you brought to my life, endless wonders, incredible sweetness, such a tiny little miracle child, unforgettable moments, joy that grew and grew, more love than you could ever dream possible!

I will never forget your strength and courage, and I will be forever proud to have had such a darling daughter.

Although your time here was short, you filled my heart with a lifetime of memories.

What a treasure, a touch of heaven here on earth.

Mommy’s little angel…

Awaiting the touch of a little hand and a smile from a little face.
Love you Bunny Bunny Bunny*

Reprinted from Autumn 2010 通讯

Reuben

Reuben

Reuben

Article from Spring 2013 通讯

When people ask me about my brother it’s impossible NOT to smile. He is such an amazing person! He’s friendly, strong, funny and has an infectious laugh. Reuben is completely comfortable being himself. He doesn’t judge others and has the purest soul I’ve ever met. It doesn’t bother me that he can’t drive, that sometimes I have to “translate” what he’s saying to others, or that everything in his world is related to a sport’s team- that’s “Rube”, my baby brother and my best friend.

I remember the day he was born very clearly, I was five years old and I was nervous, very anxious to meet what I thought would be a little sister. I remember being ushered into the room with my grandparents and my mama had the bow on the newborn cap covered up with her hand and then FINALLY she unveiled it and my life was forever changed- Reuben Wade Kleckley was born March 22nd, 1984. He was named after four generations of Kleckley men and I’m sure my parents had dreams of him playing professional baseball like my daddy and granddaddy did, but God had bigger plans for him.

When Reuben was two days old, he became very ill. He was having seizures and went into a coma- and the doctors really couldn’t tell my parents why this was happening or what was wrong. No one had any answers and I remember it was a very confusing time for me because what was a happy occasion quickly became a scary time for our family. Once he was moved to ICU, I wasn’t allowed to see him because no children were allowed, and that was hard because as a new big sister that’s all I wanted to do. After a few days, the nurses and my mom got together and broke the rules- dressing me in scrubs from head to toe so that I could hold him. I remember his baptism and watching him being baptized in ICU with my baptismal gown on, wires all over and a specimen cup taped to side of his head so he wouldn’t pull out his IV again- he was such a pitiful little sight. When Reuben was about a week old, he was flown to Johns Hopkins in Baltimore and was diagnosed with Propionic Acidemia, at the time there were only about 75 cases in the country so the doctors really didn’t give my parents a lot of hope. Most children didn’t live past infancy and those who did, typically had significant developmental delays. The latter proved true for Reuben.

As a child, in those first years I don’t think I really noticed that he had global delays- not walking until he was two or using phrases until he was four. It never dawned on me that he wasn’t doing things like other toddlers, I was just happy he was with us since there were so many times he almost wasn’t. I think we were more focused on his health with surgeries and trips to Duke to see specialists than any delays. I know my parents knew early on that he was going to have challenges, but it took me awhile before I noticed he was different. I remember the questions from friends and family and sometimes the stares when we would go out in public- it made me angry as a child, but it never made me angry at Reuben, it made me angry at the ignorance or other people. The only thing that bothered me about growing up with a special needs brother was that it was very isolating, I didn’t know anyone else like me and I didn’t have any friends who understood. I had no one to talk to about it. My parents would try, but I was afraid of feeling or saying anything that might hurt them or make them worry.

I think the question I get asked most often is, “Do you ever wish your brother was normal?” Sometimes people are shocked when I say “no”. I mean, what is “normal”? I think about how happy Reuben is, how much he enjoys the simple things in life and how, at 28, he is completely unaware of the negativity in this world. He’s had a lot of struggles, but he’s had so many more positive experiences! Having a sibling with special needs is not something you wish for and it’s not always easy, but Reuben has given us so much more than we could ever hope to give him. Christmas mornings are still exciting, watching him sing “Victory in Jesus” always brings tears to my eyes and it’s because of him that I’ve dedicated my professional career to working with children with special needs.

For a long time I’d heard “you’re so good with Reuben”… so, my family wasn’t surprised when I changed majors my junior year at USC, to work with children with disabilities. Once I met my first child with autism, I was officially hooked. I became an Early Interventionist after graduating in 2003 and in November, 2011, I partnered with a colleague to form Carolina Behavior & Beyond. Our company provides early intervention services to children with disabilities and developmental delays, mainly serving children from birth to age five. I love what I do and it’s truly amazing to see a child develop and transform before my very eyes. I found my purpose in life and I know without a doubt, I have Reuben to thank for that. He’s taught me that being different is not the end of the world, that there is wealth in every life if you have the heart to find it, and that you don’t have to be in the big leagues to pitch a no-hitter.

Update on Reuben!

Ace Right-hander was written in 1992 for a creative writing class I was taking at the time

Reuben will be 40 on his next birthday so it's probably time for an update. He's been very healthy since March 2020. Reuben attends a day program four days a week and a half-day program at our church, once a week.

He loves all things baseball and NFL football. Over the course of many Christmas's and birthdays he's accumulated almost all the team jerseys and hats. We know he's upset about something, which rarely happens, when he throws his hat. Reuben plays on a special needs baseball and basketball team and he loves bluegrass music in all its forms.

To live with Reuben is to be greeted in the morning with "Bless you Mom". His laughter can come for any reason or no reason at all and is as infectious as the common cold. He loves going to church and out to a restaurant, even though he probably won't eat anything, he just loves being around people. Reuben has been assigned the position of is Happiness Co-Ordinator at his sisters' Early Intervention company and is the primary reason she chose to work with children with special needs.

He is tube-fed all his nutrition, a mixture of Duocal, Anamix and Ensure and will snack on chips or Cheetos.

He has taught me so much about patience and enjoying the little things in life and being satisfied with whatever

comes our way.

Please feel free to contact me if you'd like to talk about our kiddos. I can be reached at

Patt@CarolinaBehaviorand Beyond.com

Reuben

Gwen

 

Gwen M. – updated May 2015
My beautiful girl just turned 9 今年几岁了,简直就是奇迹. At 2 days of age, Gwen became catastrophically ill, her body temperature dropped below 90 度, ammonia level exceeded 1,500 umol/L and she stopped breathing. She was placed on a ventilator and received peritoneal dialysis for a couple of days until she came out of her coma and was breathing on her own. On her 3rd day she was diagnosed Propionic Acidemia and her future was very uncertain. During Gwen’s first 3 years of life she spent as much time in the hospital as she did at home. Although she’s been admitted more than 50 times, she’s undoubtedly one of the happiest people on Earth. At age 1 she stopped eating by mouth, and since then she’s been fed 100% by a feeding tube because she refuses to eat anything. For many years she wore a backpack to carry her feeding pump, but she is now able to tolerate her formula through small bolus feedings and has a nurse who cares for her during the day.Gwen knows she’s very cute and she plays that to her advantage. What she does not yet know is that she’s very brave, has an endless capacity to forgive, an amazing will to live, and a beautiful spirit from God that has touched the lives of hundreds. She talks non-stop, sings the entire time we’re in the car, jumps off of anything she can climb on, loves to dance, play with her American Girl dolls and spend time with her brother and friends. She’s in second grade and receives special education services for PT, OT, math and reading. She’s also in Brownies and on the Special Olympics swim team! She is a miracle, a daily blessing, and a ray of sunshine in any room. I am grateful for every day I have with her and so proud to be her mom.

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Gwendolyn Grace M. was born at 3:33 p.m. on February 3, 2006. She will soon be only 5 months old, but has already brought a lot of drama to our lives! She was diagnosed at 3 days of age with Propionic Acidemia. At 2 days of life we found ourselves at Columbus Children’s Hospital emergency room only hours after being discharged from the hospital of her birth. We were quickly transferred to the NICU, where we spent the next 2 weeks. That first night at Children’s, her ammonia level reached over 1,500 & she had stopped breathing. The fantastic medical staff acted very quickly. Gwen was intubated & put on dialysis. We nearly lost her a couple of times during that stay, but she pulled through. She ended up having another episode less than 2 weeks after being discharged. Once again, she pulled through magnificently. We have quickly learned the fragile nature of good health, the strength of a family, along with the amazing power of prayer. My baby girl is nearly 4 months old & seems to be beating all the odds. Despite her rough beginning, she is meeting all her early milestones. Gwen has an awesome fun club, including her brother, parents, grandparents, aunts, uncles, cousins, doctors, nurses, teachers, & 朋友. We are so grateful for their love & support. Check out our new web-site with even more pictures – Click Here.

Gwen’s 1st B-day!!!!