Archives de l'auteur,,en,Navigation post,,en: Angela Waits
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Rachel G,,es,Rachel G,,es.
Histoires de famille – Rachel G,,es,Rachel G,,es.
My name is Rachel. 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.
Mes vacances préférées sont à Disney World et les croisières Disney,,en,Disney est très bien de moi aider avec mon régime alimentaire spécial,,en,Rachael G,,en. Disney is very good about helping me with my special diet.
Teegan
À la mémoire 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 plupart des visites étaient seulement pour quelques jours. After 2 rough hospitalizations, Sam était terrifiée de toute autre femme que moi (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, il a été constaté que certains signes pointant vers le développement futur de la cardiomyopathie. Il est trop tôt pour faire quoi que ce soit donc pour l'instant, we are just monitoring that.
Overall, 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! Nous sommes tellement reconnaissants pour lui et pour tous les médecins et amis qui nous ont aidés à travers notre voyage jusqu'à présent. Sam ne se porte bien à cause de notre communauté PA et son merveilleux médecin métabolique. Peu importe ce que l'avenir pour lui, nous allons continuer à faire confiance à Dieu et compter sur lui pour nous aider à traverser les moments difficiles.
That’s Sam’s story. Thanks for all you guys do to help with PA.
Christian M.
Christian M. – mis à jour Fevrier 2019
Christian, also known as CJ, est un amusement affectueux de cinq ans. Il aime écouter de la musique, Danse, Et chanter. Ses activités préférées incluent jouer avec sa soeur et regarder des vidéos YouTube. Christian est en pleine maternelle jour et aime socialiser avec ses amis. Christian rejoint le Club de yoga à l'école et il participe à la gymnastique, tennis, les classes magiques, et à cheval dans le quartier du parc. Il aime voyager et son endroit préféré pour visiter est la Great Smoky Mountains.
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, Eats chrétiens 11 grammes de protéines, boissons Propimex-2, et prendre des vitamines tous les jours. Nous avons toujours l'impression de se retrouver à l'hôpital pendant la saison grippale, mais autre que Christian a été une petite réunion garçon très heureux et en bonne santé toutes ses étapes.
histoire passée – 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. – mise à jour Février 2019
Maya est un amoureux de neuf ans. Elle adore regarder des vidéos YouTube et de faire ses propres vidéos pour sa chaîne MayaTV. Maya aime faire la boue et écouter de la musique sur son iPod. Elle aime aussi voyager et aller en vacances avec sa famille. Maya est en troisième année et aime la lecture, écrit en cursive, et la résolution des problèmes de multiplication. Elle a rejoint son service Learning Club à l'école et participe à la gymnastique, les classes magiques, tennis, drame, et à cheval dans le quartier du parc.
Maya a été diagnostiqué avec Acidemia après son arrivée propioniques de l'hôpital. Nous avons eu la chance d'avoir un diagnostic rapide à travers le nouveau-né et prescreening évité toute crise métabolique. Maya consume 13 grammes de protéines par jour de la bouche. Elle boit Propimex-2 et prend des vitamines. Overall, Maya est une petite fille heureuse et en bonne santé qui fait sourire tout le monde avec sa personnalité humoristique.
Maya – 7 years old
Maya est un enfant de sept ans, énergique, et hilarante petite fille. Elle est actuellement en première année où ses sujets de prédilection sont la classe d'ordinateur et cours de gym. Maya aime voyager. Ses lieux de voyage préférés sont tout ce qui concerne une plage et de soleil. Elle passe essentiellement tout son été à Yogi Bear camping de ses grands-parents. Elle aime "conduire la voiturette de golf", swimming, fishing, et en essayant d'attraper des grenouilles. Maya aime essayer toutes les activités. Elle a été impliquée dans le ballet, cours de hip-hop et de claquettes. Elle a été en Lego Club, club de Mad Scientist, Cooking club, et le club d'art. Elle a également essayé la gymnastique et le théâtre. passe-temps préférés de Maya comprennent faire des vidéos d'elle-même et de jouer avec tous ses poupées de bébé.
Maya a été diagnostiqué avec acidémie propionique par son nouveau-né prescreening. Avec la détection précoce, nous avons été en mesure d'éviter toute crise majeure. Actuellement Maya consomme 13 grammes de protéines par voie orale et des boissons Propimex-2 par jour. Elle est pas un grand fan de tous les rendez-vous de son médecin, mais comprend qu'elle en a besoin pour rester en bonne santé.
Scarlett Camille
Scarlett Camille 4/5/2006-11/21/09
The most wonderful thing in the world happened on April 5th, 2006 … vous êtes né….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, et je serai toujours fier d'avoir eu une telle fille chérie.
Although your time here was short, you filled my heart with a lifetime of memories.
What a treasure, une touche du ciel sur la terre.
Mommy’s little angel…
En attendant le toucher d'un peu de main et un sourire d'un petit visage.
Love you Bunny Bunny Bunny*
Reprinted from Autumn 2010 Bulletin
Gwen
Gwen M. – updated May 2015 |
My beautiful girl just turned 9 ans cette année et cela ne semble rien de moins qu'un 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!!!! |