arhivele autorului,,en,Rachel G.,,en,Afișați navigația,,en: Angela Waits
Family conference 2023
2023 Înregistrare la conferința PA
Rachel G,,es,Rachel G,,es,Rachel G,,es,Rachel G,,es,Rachel G,,es,Rachel G,,es.
Familii Povestiri – 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 years old and have propionic acidemia. I live with my mom and dad. Trei zile ale săptămânii lucrez la un centru de muncă pentru persoanele cu handicap și,,en,zile mă duc să lucrez la broasca țestoasă pictată,,en,Îmi place atât mele de locuri de muncă, dar broasca țestoasă pictată este favoritul meu,,en,I a lua pentru a picta și de a face alte opere de artă, care este vândut pentru public,,en,Îmi place să citesc și du-te pe computerul meu,,en,Am participa la evenimente la programul meu local de recreere speciale,,en,Noi mergem bowling,,en,au dansuri și să participe la joacă,,en,vacante mele preferate sunt la Disney World și Croaziere Disney,,en,Disney este foarte bun să mă ajute cu dieta mea specială,,en,Rachael G,,en 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
În memoria Loving 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. Cele mai multe vizite au fost doar pentru câteva zile. After 2 rough hospitalizations, Sam era îngrozită de orice altă femeie decât mine (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, el a fost dovedit a avea unele semne ce indică spre dezvoltarea viitoare a cardiomiopatiei. Este prea devreme pentru a face ceva despre asta asa de acum, 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! Suntem atât de recunoscători pentru el și pentru toți doctorii și prietenii care ne-au ajutat prin călătoria noastră până acum. Sam este numai de a face bine din cauza comunității noastre PA și medicul său minunat metabolice. Nu contează ce viitorul pentru el, vom continua să aibă încredere în Dumnezeu și să se bazeze pe el pentru a ne trece prin perioade dificile.
That’s Sam’s story. Thanks for all you guys do to help with PA.
Christian M.
Christian M. – actualizat Febrary 2019
Christian, also known as CJ, este o distracție iubitoare de cinci ani. Îi place să asculte muzică, dans, și să cânte. Activitățile sale preferate se numără joaca cu sora sa și vizionarea clipurilor video pe YouTube. Christian este la grădiniță plină zi și iubește socializare cu prietenii săi. Christian sa alăturat Yoga Club la școală și participă la gimnastică, tenis, clase magice, și călărie prin districtul parc. Îi place să călătorească și locul său preferat pentru a vizita este Marea 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, mănâncă creștine 11 grame de proteine, Băuturi Propimex-2, și să ia vitamine de zi cu zi. Se pare că întotdeauna să ajung în spital în timpul sezonului de gripa, dar altul decât cel creștin a fost un foarte fericit și sănătos pic întâlnire băiat toate etapele sale.
Trecut poveste – 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. – actualizat februarie 2019
Maya este un vechi dragă nouă ani. Ea iubește vizionarea clipurilor video de pe YouTube și de a face propriile videoclipuri pentru canalul ei MayaTV. Maya îi place să facă mazga și să asculte muzică pe iPod ei. Îi place, de asemenea, de călătorie și de a merge în vacanță cu familia ei. Maya este în clasa a treia și iubește lectură, scris în cursiv, și rezolvarea problemelor de multiplicare. Ea sa alăturat ei serviciu de învățare Club la școală și participă la gimnastica, clase magice, tenis, dramă, și călărie prin districtul parc.
Maya a fost diagnosticat cu acidemia după venirea propionic acasă de la spital. Am fost norocosi sa avem un diagnostic rapid prin prescreening nou-născut și a evitat orice criza metabolice. Maya consumă 13 grame de proteine pe cale orală zilnic. Ea bea Propimex-2 și ia vitamine. Overall, Maya este o fetiță fericită și sănătoasă, care îi face pe toți zâmbesc cu personalitatea ei plin de umor.
Maya – 7 years old
Maya este un șapte ani, energic, și fetiță hilar. Ea este, în prezent, în clasa întâi în cazul în care subiecții ei preferate sunt clasa de calculator și de clasă sală de gimnastică. Maya îi place să călătorească. Locații ei preferate de călătorie sunt ceva care implică o plajă și soare. Ea își petrece practic întregul ei de vară la Ursul Yogi teren de campare bunicii ei ". Ea iubește "de conducere cărucior de golf", swimming, fishing, și încercarea de a prinde broaște. Maya îi place să încerce toate activitățile. Ea a fost implicată în balet, clase de hip-hop și apăsați. Ea a fost în Lego Club, club de om de știință nebun, Club de gătit, și art club. Ea a încercat, de asemenea gimnastica si teatru. hobby-urile preferate Maya se numără a face videoclipuri cu ea și jucându-se cu toate păpușile pentru copii.
Maya a fost diagnosticat cu acidemia prin prescreening propionic ei nou-născut. Cu depistarea precoce, am fost capabili de a evita orice criză majoră. În prezent, Maya consumă 13 grame de proteine, prin gura și băuturi Propimex-2 pe zi. Ea nu este un mare fan al tuturor întâlnirilor medicului ei, dar ea are nevoie de ele o înțelege să rămână sănătoși.
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 Newsletter
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!!!! |