Archivo del Autor: Angela Waits
conferencia familiar 2023
2023 Registro de la conferencia PA
Rachel G,,es,Rachel G,,es,Rachel G,,es,Rachel G,,es,Rachel G,,es,Rachel G,,es,Rachel G,,es.
Historias de familia – Rachel G,,es,Rachel G,,es,Rachel G,,es,Rachel G,,es,Rachel G,,es,Rachel G,,es,Rachel G,,es.
My name is Rachel. I am 40 años de edad y acidemia propiónica,,en,Vivo con mi mamá y papá,,en,Tres días de la semana trabajo en un centro de trabajo para las personas con discapacidad y en,,en,días que van a trabajar en la tortuga pintada,,en,Me encanta mis dos trabajos, pero la tortuga pintada es mi favorito,,en,Llego a pintar y hacer otras obras de arte que se vende al público,,en,Me gusta leer e ir en mi equipo,,en,Me asistir a eventos en mi programa local de Recreación Especial,,en,Nos jugar a los bolos,,en,tienen bailes y asistir a obras,,en,Mis vacaciones favoritas son en Disney World y los cruceros de Disney,,en. 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. Disney is very good about helping me with my special diet.
Teegan
En la memoria cariñosa de Teegan,en
2002-2017
Sam W
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. La mayoría de las visitas eran sólo por un par de días. After 2 rough hospitalizations, Sam tenía terror a cualquier mujer que no sea yo (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, que se encontró que tenía algunas señales que apuntan al desarrollo futuro de la cardiomiopatía. Es demasiado pronto para hacer nada al respecto así que por ahora, we are just monitoring that.
En general, 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! Estamos muy agradecidos por él y por todos los médicos y amigos que nos han ayudado a través de nuestro viaje hasta ahora. Sam sólo se está haciendo bien debido a nuestra comunidad de PA y su maravilloso médico especialista en metabolismo. No importa lo que depara el futuro para él vamos a seguir confiando en Dios y confiar en él para llevarnos a través de los tiempos difíciles.
That’s Sam’s story. Thanks for all you guys do to help with PA.
Christian M.
Christian M. – actualizado Febrero 2019
Christian, also known as CJ, es un amante de la diversión de cinco años. Le encanta escuchar música, danza, y cantar. Sus actividades favoritas incluyen jugar con su hermana y ver vídeos de YouTube. Cristiano está en el jardín de infantes de día completo y le encanta socializar con sus amigos. Cristiano unido club de yoga en la escuela y participa en la gimnasia, tenis, clases de magia, y montar a caballo a través del distrito de parques. Le encanta viajar y su lugar favorito para visitar es las Grandes Montañas Humeantes.
Christian’s older sister was diagnosed with Propionic Acidemia through the newborn prescreening, therefore we had a crisis management plan put in place for his birth. Within 48 hours of his birth, we received his diagnosis of PA. Currently, come cristianos 11 gramos de proteína, bebidas Propimex-2, y tomar vitaminas diariamente. Nos parece que siempre terminan en el hospital durante la temporada de gripe, pero aparte de que Christian ha sido un poco reunión muy feliz y saludable niño de todos sus hitos.
historia pasada – Christian – age 3
Christian, also known as CJ, is a three year old dancing machine. He loves to listen to music and have dance parties in our kitchen and basement. He is the life of the party and always making people smile. CJ attend preschool twice a week and is also involved in soccer and gymnastics. At home, he loves to follow his older sister around and try to play whatever she is playing. His superhero toys are often battling Barbies. Like most other three year olds, CJ loves cars, trucks, and his favorite television show is Paw Patrol.
Maya M.
Maya M. – actualizado en febrero 2019
Maya es un amor de nueve años de edad. A ella le encanta ver vídeos de YouTube y hacer sus propios videos de su canal MayaTV. Maya le encanta hacer limo y escuchar música en su iPod. También le gusta viajar e ir de vacaciones con su familia. Maya se encuentra en tercer grado y le encanta leer, escribir en letra cursiva, y resolver los problemas de multiplicación. Se unió a su servicio Club de Aprendizaje en la escuela y participa en la gimnasia, clases de magia, tenis, drama, y montar a caballo a través del distrito de parques.
Maya fue diagnosticado con acidemia propiónica después de volver a casa desde el hospital. Tuvimos la suerte de tener un diagnóstico rápido a través de la preselección recién nacido y evitó cualquier crisis metabólica. consume Maya 13 gramos de proteína por la boca todos los días. Ella bebe Propimex-2 y toma vitaminas. En general, Maya es una niña feliz y sana que hace sonreír a todos con su personalidad humorística.
maya – 7 years old
Maya es un niño de siete años, energético, y niña hilarante. Actualmente se encuentra en el primer grado en que sus temas preferidos son la clase de computación y de la clase de gimnasia. Maya le encanta viajar. Sus lugares favoritos de viajes son cualquier cosa que implica una playa y el sol. Ella pasa básicamente toda su campamento de verano en el Oso Yogi sus abuelos. Ella ama "conducir el carrito de golf", swimming, fishing, y tratando de atrapar ranas. Maya le encanta probar todas las actividades. Ella ha participado en el ballet, clases de hip hop y toque. Ella ha estado en el club de Lego, club de científico loco, club de cocina, y el club de arte. También ha intentado gimnasia y teatro. pasatiempos favoritos de Maya incluyen la fabricación de vídeos de sí misma y juega con todos sus muñecas del bebé.
Maya fue diagnosticado con acidemia propiónica preselección a través de su recién nacido. Con la detección temprana, hemos sido capaces de evitar cualquier crisis importante. Actualmente Maya consume 13 gramos de proteína por vía oral y bebidas Propimex-2 al día. Ella no es un gran fan de todas las citas de su médico, pero entiende que los necesita para mantenerse sano.
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.
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 Hoja informativa
Gwen
Gwen M. – updated May 2015 |
My beautiful girl just turned 9 years old this year and it seems nothing short of a miracle. At 2 days of age, Gwen became catastrophically ill, her body temperature dropped below 90 degrees, 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.
—————————————————————————- 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, & friends. 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!!!! |