Author Archives: Angela Waits
Familienkonferenz 2023
2023 Anmeldung zur PA-Konferenz
Rachel G,,es,Rachel G,,es,Rachel G,,es.
Family Stories – Rachel G,,es,Rachel G,,es,Rachel G,,es.
Mein Name ist Rachel,,en,Jahre alt und Propionazidämie haben,,en,Ich lebe mit meiner Mama und Papa,,en,Drei Tage in der Woche arbeite ich an einem Arbeitsplatz für Behinderte und auf,,en,Tag gehe ich an der Painted Turtle arbeiten,,en,Ich liebe meine beiden Jobs, aber die gemalte Schildkröte ist mein Favorit,,en,Ich bekomme zu malen und andere Kunstwerke zu tun, die an die Öffentlichkeit verkauft wird,,en,Ich liebe es, auf meinem Computer zu lesen und gehen,,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. Ich besuche Veranstaltungen in meinem lokalen Sonder Freizeit-Programm,,en,Wir gehen Bowling,,en,haben Tänze und besuchen Spiele,,en,Meine Lieblingsferien sind in Disney World und Disney Cruises,,en,Disney ist sehr gut über mich mit meiner speziellen Diät helfen,,en,Rachael G,,en. 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.
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. Die meisten Besuche waren nur für ein paar Tage. After 2 rough hospitalizations, Sam wurde von jedem weiblichen außer mir Angst (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, er wurde einige Anzeichen zu haben, wies auf die zukünftige Entwicklung von Kardiomyopathie gefunden. Es ist zu früh, etwas dagegen zu tun, so jetzt, we are just monitoring that.
Insgesamt, 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! Wir sind so dankbar für ihn und für alle Ärzte und Freunde, die uns durch unsere Reise geholfen haben, so weit. Sam tut nur gut wegen unserer PA-Gemeinschaft und seine wunderbare metabolische Arzt. Egal, was die Zukunft für ihn hält werden wir auch weiterhin auf Gott zu vertrauen und verlassen sich auf ihn, uns durch die schwierigen Zeiten zu erhalten.
That’s Sam’s story. Thanks for all you guys do to help with PA.
Christian M.
Christian M. – aktualisiert Febrary 2019
Christian, also known as CJ, ein Spaß liebende 5 Jahre alt ist. Er liebt es, Musik zu hören, tanzen, und singen. Seine Lieblings Aktivitäten umfassen das Spielen mit seiner Schwester und beobachten YouTube-Videos. Christian ist in ganzen Tag Kindergarten und liebt Geselligkeit mit seinen Freunden. Christian trat in der Schule Yoga Verein und er nimmt an der Gymnastik, Tennis, Magie-Klassen, und Reiten durch den Park Bezirk Reiten. Er liebt es zu reisen und sein Lieblingsplatz zu besuchen, ist die 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, Christian eats 11 Gramm Protein, Getränke Propimex-2, und nehmen Vitamine täglich. Wir scheinen immer im Krankenhaus während der Grippesaison zu Ende, aber anders als der Christian war eine sehr glücklich und gesund kleine Junge Sitzung aller seine Meilensteine.
Historische Geschichte – 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. – aktualisiert Februar 2019
Maya ist ein neunjährige Schatz. Sie liebt es zu beobachten YouTube-Videos und machen ihre eigenen Videos für ihre MayaTV Kanal. Maya liebt Schleim zu machen und Musik auf ihrem iPod hören. Sie mag auch reisen und in den Urlaub mit ihrer Familie. Maya ist in der dritten Klasse und liebt das Lesen, Schreiben in Kursiv, und die Lösung von Multiplikationsaufgaben. Sie schloß ihren Service Learning-Club in der Schule und nimmt an der Gymnastik, Magie-Klassen, Tennis, Theater, und Reiten durch den Park Bezirk Reiten.
Maya wurde mit Propionazidämie diagnostiziert aus dem Krankenhaus nach kommen. Wir hatten das Glück, eine schnelle Diagnose durch das Neugeborene prescreening haben und vermied jede metabolische Krise. Maya verbraucht 13 Gramm Protein durch den Mund täglich. Sie trinkt Propimex-2 und nimmt Vitamine. Insgesamt, Maya ist ein glückliches und gesundes kleines Mädchen, das jeder mit ihrer humorvollen Persönlichkeit Lächeln macht.
Maya – 7 years old
Maya ist ein sieben Jahre alt, energisch, und urkomisch kleines Mädchen. Zur Zeit ist sie in der ersten Klasse, wo ihre Lieblingsfächer Computerklasse und Sportunterricht sind. Maya liebt es zu reisen. Ihre Lieblingsreise Standorte denen alles einen Strand und Sonnenschein. Sie verbringt im Grunde ihren ganzen Sommer bei ihren Großeltern 'Yogi Bear Campingplatz. Sie liebt "den Antrieb des Golf-Cart", swimming, fishing, und zu versuchen, Frösche zu fangen. Maya liebt alle Aktivitäten zu versuchen,. Sie wurde in Ballett beteiligt, Hip-Hop und tippen Klassen. Sie war in Lego Club, Mad Scientist Club, Kochclub, und Kunstverein. Sie hat auch versucht, Gymnastik und Theater. Maya liebsten Hobbys gehört es, Videos von sich selbst und das Spiel mit all ihren Babypuppen.
Maya wurde mit Propionazidämie durch ihr neugeborenes prescreening diagnostiziert. Mit Früherkennung, konnten wir jede große Krise zu vermeiden. Derzeit Maya verbraucht 13 Gramm Protein durch den Mund und Getränke Propimex-2 täglich. Sie ist kein großer Fan von allen Terminen ihres Arztes, aber versteht sie braucht, um sie gesund zu bleiben.
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 Mitteilungsblatt
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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 Grad, 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!!!! |