Lauren June (age 9) Acidemia propiónica, Cardiomiopatía & Autism (passed away peacefully at Canuck Place Children’s Hospice from Congestive Heart Failure) Dear Lauren, It has been 2 months since you’ve been gone and we think about you every With Love, Please check out Lauren’s Webpage at http://laurendelima.weebly.com/ to see more photos and videos. |
Category Archives: Noticias & Noticias
Vincent F.
Vincent F.
My most fondest memories of my son Vincent was his strength, courage and the constant happiness that he projected. His favorite things to do were to and I quote “go to the rides or “go bowl” and he loved to be with his family. Even though he battled PA he was always smiling and laughing. It brings me to tears when I think about it but it is something that he taught in all of us that whatever “life” God chose for you, it is much better to live it to your fullest than to give up. Vincent was 10 years old when he lost his battle with PA and we will never forget his beautiful smile and warm heart. “The mention of my child’s name may bring tears to my eyes but it never fails to bring music to my ears. If you are really my friend, please don’t keep me from hearing the beautiful music. It soothe’s my broken heart and fills my soul with love.” |
Kirstyn T
Kirstyn T – updated 3/2016
Hola amigos PA!! Ha sido un largo tiempo desde que hemos hablado con muchos de ustedes!! Es tan contento de estar de nuevo en contacto por compartir la historia actualizada de Kirstyn! Para aquellos de ustedes que no nos conocen… Voy a empezar desde el principio. Kirstyn Paige nació de agosto 17, 2004 y después de diez años de infertilidad y un embarazo sin fin había llegado. Cuando nació, ella comenzó a mostrar signos de ictericia y nuestro pediatra decidido realizar algunos análisis de sangre. Se volvió con los resultados de incompatibilidad ABO y tenía que ser transportado de una hora al norte de nuestra ciudad natal para Shands de la Universidad de Florida para el triple fototerapia. También pasa a ser mi Alma Mater…asi que…VAN LOS COCODRILOS!!!! (Tuve que tirar de que allí!.) Por supuesto que estábamos muy preocupada por este diagnóstico, pero no teníamos idea de lo que estaba en el horizonte. Mientras Kirstyn estaba en la sala de recién nacidos en Shands ella respondió bien al tratamiento ictericia , pero empezó a tener algunos otros temas. A los seis días de edad se convirtió en casi letárgico y se negó a la enfermera y parecía tener incluso un tiempo difícil abrir los ojos. Yo se molestó y le preguntó a la enfermera que llame a un médico para comprobar su más. Se convirtió preocupado por su respiración trabajosa y decidió que tenía que ser ingresados en la UCIN para su posterior evaluación y pruebas. A medida que avanzaba el día de su estado se deterioró y ella en realidad dejó de respirar. Afortunadamente ella estaba en el hospital y recibió atención médica muy rápido. Su amoniaco había aumentado a más de 700 y ella era acidotic. Ella estaba en diálisis, intubado y el personal médico expresó su preocupación de que ella no puede vivir a través de la noche. Ella tenía sólo siete días de edad. Estábamos absolutamente devastado!!
Un médico con el nombre de Dr.. Bernstein estaba de servicio en la NICU y tenía un poco de experiencia limitada con enfermedades metabólicas. De inmediato se llamó en el equipo de Genética y después de unos días tuvimos el diagnóstico confirmado de acidemia propiónica. Pasó nueve y 1/2 semanas en la UCI neonatal y finalmente alcanzamos las órdenes de alta habíamos estado esperando en! Avance rápido………………………..
Kirstyn es un increíble año de edad once que comenzó la escuela secundaria el año pasado. La gente está tan a la derecha cuando te dicen que no parpadear! ¿Cómo mi bebé tienen la edad adecuada para empezar la escuela media? Ella ha tenido unos catorce hospitalizaciones posteriores largo de los años y por suerte no ha tenido un ingreso de alrededor de dieciocho meses!! Ella todavía es tratada en Shands y también ha desarrollado miocardiopatía y QT largo limítrofe. Sus médicos son increíbles y este equipo médico ha permanecido a nuestro lado durante toda su vida!! Ella tiene un GTUBE que se insertó a las tres semanas de edad y esta decisión nos ha salvado numerosas visitas al hospital. Kirstyn también come por la boca y en la mayoría de los días consume 100 por ciento de su alimento por la boca. Sus gustos cambian con bastante frecuencia y sus comidas favoritas de una semana no serán sus alimentos favoritos de la próxima semana. Suspiro……… A ella le encanta el chocolate, papas fritas, Doritos, Espaguetis, dulce té y panqueques McDonalds lota de jarabe, croquetas de patata. Estamos en una base primero nombre muy amable con nuestro personal local de McDonalds. 🙂
Kirstyn en realidad tiene un coeficiente intelectual dotado y mientras que ella tiene la capacidad de sobresalir en la escuela, no siempre resultó de esa manera debido a su diagnóstico de TDAH moderada. Ella es capaz de tomar un medicamento no estimulante para tratar su TDAH, pero el médico no autorizará medicamentos estimulantes debido a sus problemas de corazón. Algunos días, el comportamiento es una verdadera lucha , pero nunca deja de sorprendernos con su encanto, ingenio y sentido del humor!
Kirstyn es bastante el artista y, de hecho ha comenzado una cartera de arte de sus dibujos y pinturas. Ha tomado clases privadas de arte y este es su pasión. También practica el tiro con arco con su papá y le gusta disparar su arco y la pesca. Ella también disfruta de antagonizar a su hermano menor, Cason, que tiene nueve años y no afectados de PA. Last year, nos dieron el honor de convertirse en un embajador para el Hospital Shands red del milagro de los niños en UF. Ella tiene la increíble oportunidad de unirse a los niños con otras discapacidades y me da el honor de compartir su historia y dando a conocer a acidemia propiónica y otras condiciones metabólicas.
Vivimos aproximadamente una hora y media de distancia de Disney y hemos tenido el placer de conocer a la diversión con algunas otras familias PA cuando han estado de vacaciones. So, si alguna vez en nuestro cuello de los bosques, por favor, póngase en contacto con nosotros y ver si podemos hacer frente a ti también!!
He hecho amigos para toda la vida de algunos de los otros padres PA y sus experiencias han ayudado a navegar por estas aguas difíciles de la acidemia propiónica. Como mis años de experiencia continúa creciendo mi esperanza es que puedo hep otros padres, así. Mucho amor de la Ronnie, Marsha, Kirstyn y Cason.
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Kirstyn T.
After ten years of infertility issues, Kirstyn was on her way! She turned 4 on Saturday Aug 17 & mom said her birthday was bittersweet as it is every year. Like so many PA families, her parents were told in the first week that their daughter would likely not live through her initial crisis. When Kirstyn was born she had ABO incompatibility which is basically severe jaundice, so she was transported to Shands NICU to get her liver to kick in. The first 7 days there, Kirstyn became very lethargic & stopped eating. One of the nurses even scolded mom saying she couldn’t take her child home until she proved she could feed her. The next day Kirstyn crashed, falling into a coma. Ammonia was over 700 & she spent 9 weeks in that NICU, during which time she had a core team of nurses assigned to her because of her rare condition & bleak prognosis.
After that, she went the entire first year without further need for hospitalization, but has had 4 since then. She’s had three blood transfusions of packed red cells. She was diagnosed with mild cardiomyopathy at 18 months, so she has an EKG & EEG every 6 months. Stomach bugs are the hardest thing, causing 2 hospitalizations due to excessive vomiting, ketones & high ammonia. December 2005 she spent 2 days in the hospital for a terrible ear infection that was first misdiagnosed as seizures because she was vomiting then zoning out. March 2006 she was in overnight for a respiratory infection & high ammonia. Her mom said “Kirstyn gets sick really quickly! Once she reaches moderate ketones, she will need to go straight to the hospital or her body will begin rapid decompensation.”
Kirstyn had OT & PT her first 3 years through an Early Intervention program. At the age of 3 she broke her collar bone in school because she didn’t reach to catch herself during a fall due to her low muscle tone. She’s clumsy when she walks, but has always been very active. Her mom said “If she gets red faced, we have to give her extra calories or she will spill ketones within an hour of hard play. We learned that the hard way during her 3rd birthday party at the park.”
Last year at age 3, test results showed Kirstyn had reading & comprehension skills of a 6 year old, & counting & number abilities of a 5 year old. She’s going into her 2nd year of pre-k, geared toward medically impaired children with no cognitive delays. She’s quite bold & independent & it’s very difficult to keep her on a task she doesn’t want to do. She loves to sing, draw, & paint. She has very low muscle tone in her hands, so she really resists anything that involves use of hands, like using scissors. Due to her low muscle tone, Kirstyn still receives PT through school. She has a lot of behavioral issues & doesn’t like to listen. Her school has recently considered testing her for ADHD, even though they’re also considering testing her for the gifted program.
She’s just started her first activity, tap dancing & loves it! Recently Kirstyn learned to ride a bicycle with training wheels, which she got for her birthday. Playing on the computer is one of her favorite past times. She doesn’t like her little brother Cason (20 months), & often asks her mom to “Please send him back to the Little Brother Store.” She picks out all of her own clothes & doesn’t care what people think : ) And, she loves to do housework.
Kirstyn eats 100% by mouth except when she’s sick. With a packed lunch from her mom, she eats so much better to at school with friends around. Her mom said “We always know when she’s getting sick because her first symptoms are always spilling ketones and she stops eating. For this reason she has a g-tube“. Like many young children, she has a weird diet consisting largely of french fries, pancakes, hash browns & loves to eat at McDonalds & Bob Evans! Her mom said she likes ketchup on mini frozen waffles & calls them mini pizzas & would eat ketchup on everything (anything mom lets her put it on!) She doesn’t care much for sweets, only an occasional M&M. At parties she’ll tend to lick a bit of icing to feel like part of the group.
As far as potential complications from PA, she’s doing amazingly well. As of this year her doctors said she only needs labs 4 times per year! Her restricted amino acids typically run around the low end of normal, & she’s given a Valine supplement because it’s always run below normal. Her Glycine is typically around 800.
Marsha, Kirstyn’s mom, expressed her sincere appreciation for the support she’s received from the other PA families through PAF, saying “We’ve been blessed to be part of this support community, which I’ve turned to for help on many occasions.” She said they’ve even met a few other PA families because they live so close to Walt Disney World, so look her up if you’re planning a trip!
On behalf of Marsha, Ronnie, Kirstyn, & Cason
Brandon N.
Brandon N.
Our son Brandon started showing symptoms of his illness within
the 1st day of his birth (7-9-98). To make a long story short, he was finally diagnosed at 5 days old at Riley Children’s Hospital in Indianapolis, Indiana. We have a really great group of people who manage Brandon that include Dr.s Wappner and Hainline and a great dietician Becky who I consider my friend. Without them I really don’t know where Brandon would be today.
Brandon has a g-tube and gets almost all of his nutrition through his tube. He does eat by mouth and that mostly consists of Quakes (ranch flavored), and puffed popped corn. Brandon also likes sauces and will usually try anything like that. Now that is enough about the medical stuff.
Let me really tell you about my son Brandon. He is 6 (almost 7). He will be entering 1st grade in a special education class. He has conquered his ABC’s and will soon have his numbers 1-10 down. Brandon loves to play outside and really enjoys being around other kids. He swims with Special Olympics, plays baseball on a Challenger league and can ride his bike with training wheels. Brandon has shown great promise with his vocalizations and with practice I know someday I will hear “I love you Mom.” Brandon has a smile that can melt your heart, but also has the mischievous twinkle in his eye.
Some days, weeks, month’s etc. can be tough, but when that little hand holds yours as you watch Shrek for the 100th time, or when he picks out the same bedtime story every night, or when he is so proud of himself because he finally learned how to blow out a candle…
I know I have been truly blessed.
We love you Brandon, keep up the good work.
Tony, Lisa, Matt and Brandon N.
Valparaiso, Indiana
Amber B.
Chase W.
Chase W. age 22 – updated 4/2020
Han pasado cuatro años desde que escribí una actualización sobre Chase. He is 22 años de edad ahora y estoy feliz de informar que él está muy bien y se mantiene saludable durante este momento tan difícil de la pandemia.
Durante estos últimos cuatro años, Chase ha requerido dos hospitalizaciones.. En abril de 2017, Chase se puso muy enfermo de neumonía.. Estuvo conectado a un ventilador durante tres semanas.. No estábamos seguros de que lo lograría, pero Chase es un luchador y había tanta gente rezando por él. Muchos de ustedes fueron parte de esas oraciones, y no puedo agradecerte lo suficiente. Ha sido metabólicamente estable en su mayor parte excepto, of course, cuando el esta enfermo. Además del médico genético y el neurólogo, estamos viendo un cardiólogo para el síndrome de qt largo. También vimos a un nefrólogo y nos enteramos recientemente de que sus riñones solo funcionan al cincuenta por ciento.. A pesar de estos desafíos, Chase sigue siendo relativamente saludable.
Chase se graduó de la escuela secundaria la primavera pasada. Fue tan emocionante para el. Amaba tanto su escuela, pero era hora de que él siguiera adelante. El mayor desafío fue encontrar un programa apropiado para él después de la graduación.. Pude encontrar un programa que pudiera satisfacer todas sus necesidades y pude obtener los fondos para el programa.. Eso fue un gran alivio!
Chase es una persona muy feliz y hace sonreír a todos los que conoce.. Le encanta recibir las tarjetas de cumpleaños del club de cumpleaños de guerreros.. Le gusta pasar tiempo con su familia., especialmente, su hermano mayor Kyle. Le gusta ver deportes en la televisión y realmente disfruta salir a caminar cuando lo empujan en su silla de ruedas.. Puede caminar solo, pero se cansa con bastante facilidad..
Espero que durante este momento tan difícil todos los miembros de nuestra familia se mantengan saludables.. Es un momento tan aterrador, pero tener una organización como esta es muy útil.. No puedo agradecer lo suficiente a la fundación de la AP y a la OAA por todo lo que hacen.
Amy
Mamá a perseguir 22 Pensilvania
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Actualización sobre el Chase W., age 18
Hola a todos, la última vez que había puesto a cabo una actualización sobre el Chase, él tenía diez años de edad. Él va a cumplir 18 próximo mes! No puedo creer cómo el tiempo ha pasado volando.
Chase ha crecido hasta convertirse en un hombre joven y guapo. Él realmente ha perdido una gran cantidad de grasa de bebé y se ha vuelto más delgado y más alto. Hemos tenido que hacer ajustes con su fórmula a lo largo del camino, pero, en general, Chase ha estado haciendo muy bien. Todavía no come nada por la boca, excepto las bebidas de agua.
En la actualidad es un junior en una escuela de educación especial. Empezó a esta escuela en su segundo año. Este fue un gran cambio para él. Probamos el programa en nuestra escuela secundaria local, pero, simplemente no podía satisfacer todas las necesidades de Chase. también, tenía 2,000 students, mientras que la escuela actual de Chase tiene 200 students. El programa está en es maravilloso. Realmente le están enseñando habilidades para la vida, y tienen un taller protegido de la vista. Chase tiene determinados puestos de trabajo que tiene que hacer todos los días. Los estudiantes, junto con el personal de salir a la comunidad una vez a la semana. Él, además, recibe terapia del habla / lenguaje, occupational therapy, y la terapia aba.
Chase no ha sido hospitalizado durante al menos cinco años. Cualquier enfermedad que ha conseguido, hemos sido capaces de controlar en casa, incluyendo un virus estomacal. Tenemos, además, finalmente han tenido ataques durante la Caza 6 months. Él está en tres medicamentos para las convulsiones, y se han controlado bien realmente les.
la fuerza física de Chase ha disminuido en los últimos años sin duda. Los médicos quieren descartar todo, por lo que una resonancia magnética está prevista para él pronto. Ha sido equipado para los aparatos ortopédicos y esto ha ayudado mucho con su pie. Él se fatiga muy fácilmente, y, a veces requiere una silla de ruedas. Esto es tan extraño para el niño que cuando era más joven, que tenía literalmente como "persecución" a todas partes.
En general, Chase es muy feliz. Él realmente disfruta de sus libros, sus ciertos juguetes musicales, y ver deportes en la televisión. Le gusta pasar tiempo con su familia, especialmente a su hermano mayor Kyle cuando llega a casa de la universidad. Disfruta de sus actividades extracurriculares de baloncesto y béisbol, no podrá participar siempre, pero él realmente disfruta de ser un espectador!
Me siento bendecido de ser madre de Chase. Él es un niño muy especial. I am, además, muy agradecidos por la fundación PA, tanto como, las carreteras.
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Chase W.
Our son Chase was born March 19, 1998. He was our second child and my husband and I were so excited because we were having another boy and Kyle, our older son, was going to be a big brother. We had no idea what was ahead of us. Chase’s story is so familiar to all PA families. By Chase’s third day of life, I knew something was not right. He would not breastfeed and his breathing was very labored. I also noticed an odd smell on him when I held him close. It was late at night and I alerted the nurse, but she just thought I was tired. I insisted that he be taken to the nursery for the doctors to check him out. I remember calling my husband telling him Chase was very sick and this was before anyone told me what was wrong. I just knew something was wrong with him. As a mom, you just know. Sure enough, the nurse came back, and told us that his temperature had dropped to 95 degrees and he was acidotic. Of course, I did not know what that meant. Fortunately, we were in a very good hospital and they immediately started giving Chase medicine that would help him, especially with his ammonia. They did have to transfer him to St. Louis Children’s Hospital, but by Chase’s fifth day of life, the doctors at Children’s hospital were very sure he had Propionic Acidemia. My husband and I, of course, had never heard of it. I just remember asking God to please spare our son so my son Kyle could have a little brother.
Now Chase is 10 years old. We can’t believe it sometimes. In the beginning, the doctors were very guarded on Chase’s prognosis because he had an early onset case of PA and not a lot was known. He has been hospitalized so many times we have lost count, but as he has gotten older, those hospital admissions have decreased. He has just recently started having seizures again, but besides that his PA is very much in control.
Chase is such a sweet boy, he brings so much joy to our lives. He is developmentally delayed, but he is making strides every day. He really lives up to his name, by the time he was walking at 18 months, we were definitely “chasing “him around and have been ever since. We are so thankful to all the OAA families and the PA families for all the support and advice. With this disease, you can really start to feel alone, but it is such a blessing to be able to connect with other families. This past year, we went to our first PA family day, and we had such a good time. It was so nice to be able to talk to other families about g-tubes and other stuff and know that other people totally know where you are coming from.
We would love to talk to other families.
God bless you,
Amy, Jackson, Chase 10 Pensilvania, and Kyle 14
Tiffany B.
Tiffany B. – Age 16 – actualizado en febrero 2017
Tiffany es una persona muy extrovertida, ella le encanta hablar. Sus cosas favoritas en el mundo son Odd escuadra, Barney, y cualquier niño muestra en YouTube. Ella es una estudiante de segundo año en la escuela secundaria en una clase de educación especial. Ella ha sido bastante estable en los últimos años con su PA, sólo problemas con QT largo, y convulsiones. Ella es totalmente g-tubo dependiente, pero siempre tiene hambre. Ella es muy compasivo con los demás y es muy dulce. Realmente se necesita mucho para bajarla.
Hi, mi nombre es Tiffany, I am 8 years old, Estoy en 3er grado en Lithia Springs Elemental. Algunas de mis cosas favoritas son Barney y rompecabezas. Tengo un montón de retrasos, pero eso esta bien, Estoy en una clase de una escuela donde todos los hijos conmigo también lo hacen. No comer por la boca, Tengo este tubo fresco en mi barriga y todo lo que necesito mi mamá o papá me da a través de él. Se puede comer mientras se está dormido? puedo. No he estado en el hospital durante aproximadamente 3 years now. Esto es muy bueno para mí, No me gusta el hospital y todos los palos.
tengo una hermana mayor, Ámbar, que también tiene PA. Creo que es la cosa más fresca en la tierra.
Dios bendiga,
Tiffany B.
Georgia
Gabriel L.
Hi, our son Gabriel was born in London. He was diagnosed with propionic acidemia at 2 weeks of age after spending his first hours of life hyperventilating and with severe acidosis and high ammonia. Luckily, the medical team at Great Ormond Street Hospital for Children was very good at stabilizing him and at diagnosing him very quickly. Despite never showing actual fits, Gabriel was then diagnosed with infantile spasms (a type of childhood epilepsy) at 5 months of age after deteriorating progressively. We were again very lucky that he responded well to treatment with vigabatrin. He was weaned off medication at one year of age and has been seizure free since. At that same age, he stopped eating by mouth completely and a g-tube was inserted in his stomach for feeding. His formula currently comprises pediasure, polycose, XMTV1, vitamins and flax oil. He is been very stable metabolically for the past two years and is been followed up by the metabolic team at Children’s Hospital of Philadelphia every six months. Gabriel’s development was very slow until 18 months of age but he has made tremendous progress since he started therapies with the Early Intervention Program when we moved to the United States. He just transitioned to a special education pre-school program where he continues receiving OT, PT and ST. Since he started school, his gains have been really amazing. He just started talking and is able to comprehend perfectly and speak words in all three languages he hears. He has also gained cognitively and matured a lot. He has still a lot to catch up being his major challenges his low tone and his speech but we embrace his enthusiasm and effort and try to offer him as much support as we can. —————————————————————————- Updated 9/2015 – Gabriel – 13 years old As is often the case with so many children who are born with an organic acidemia, Gabriel’s first year of life was full of difficulties and hospital stays. After his initial crisis at 24 hours of age, Gabriel had lots of episodes of metabolic decompensation, and high ammonia levels, compounded by undiagnosed epilepsy (infantile spasms). Nevertheless, he started to stabilize around the time of his first birthday, and you can check out a summary of Gabriel’s first five years of life in a previous report we wrote for PAF.
During his first year of life, Gabriel spent 9 months with a nasogastric tube, which was so uncomfortable that it greatly contributed to his decision to stopping eating. But he got a G-tube at 15 months of age, and quality of life improved, not only for him, but also for the rest of the family. Through the G-tube, we started managing him much better at home because we did not have to rush him to the hospital every time he started throwing up. He became even more stable at the age of 3, and he started preschool also then. At that time, Gabriel didn’t have words and was incredibly delayed in all domains (especially motor and language) but he has overcome a lot and has been steadily progressing ever since. This was a little miracle to him thanks to an amazing teacher. Ciertamente, one very important thing for us is that Gabriel has not stopped developing, even though he makes progress at this own pace (meaning, very slow!).
The other little miracle we experienced with Gabriel is that at the age of 6 we found a wonderful feeding therapist (who was actually a special-ed teacher with experience in feeding issues from the behavioral point of view). She taught Gabriel how to eat (after 6 years of being 100% tube-fed). It was a very slow process but Gabriel now eats like 50% of his nutrition by mouth with a very wide variety of (very healthy!) foods: rice, pasta, vegetables, fruits and so on, everything with low protein, although he also eats the occasional egg or fish sticks. The reason why he only eats like 50% by mouth is because he still has very poor oral motor skills, and is very slow chewing and swallowing. Regardless, the fact that Gabriel can eat by mouth has helped tremendously to normalize our family: we go more often to restaurants, and Gabriel is happy to seat at the table with us and even request his own food from the menu. He has gained so much confidence as a result of eating by mouth! In practical terms, the biggest challenge that Gabriel faces right now is his executive function (he has very poor coordination and motor skills, although he can run relatively well) and his language (he is diagnosed with a language disorder and although his IQ is a bit low, the psychologists think that part of the problem is his severe language issues). As a result of this, Gabriel attends a special-education school with highly individualized education. His class has two teachers and seven other children, and Gabriel still receives a lot of therapy at school (OT, PT, ST).
What is crucial about Gabriel’s life is that he is a very happy child. He loves water and has been learning how to swim for two years now and is able to execute quite a nice stroke (although the coordination with breathing is very difficult for him). In the past two winters he has also been trying adaptive ski and has absolutely embraced it. He has been traveling quite extensively around the world since he was 2 months old (we go often to Mexico and Spain to visit our families, and he loves playing with his cousin Marifer). Last year, the Make-a-Wish Foundation granted Gabriel a trip to Japan. He wanted to visit Tokyo, the city where Lightning McQueen (from the movie “Cars 2”) races in the middle of the night lights. It was an absolutely amazing experience and a very beautiful memory that hopefully will last forever in all of us!
Looking forward, we think Gabriel’s life will be very challenging, as he is unlikely to be able to live independently. Sin embargo, we feel blessed that he is such a kind and caring child who tries to enjoy new adventures, no matter the challenge. So, we try not to think too hard about what it will be, but focus instead on who Gabriel is and what he does right now, taking one day at a time!
Please, feel free to contact us if you would like to learn more details about Gabriel’s management or activities.
Cheers,
Marisa Cotrina and Juan Carlos López |
Lucy H.
Carson A.
![]() Carson A. We adopted Carson at birth and we have been blessed ever since. He’s the most amazing little boy! Carson is so silly and makes us laugh all the time. Carson has a 16 year old sister and a 19 month old brother. He is a very happy little boy, is extremely active and he enjoys music a lot. It’s amazing how much rhythm he has at such a young age. We think he will probably be a famous musician some day.
Carson will be Three years old on June 15th 2006. He was diagnosed with PA at three weeks of age by Doctor Jose Abdenur at Children’s hospital of Orange in California. We live in Laguna Niguel, California. Carson is doing very well. He is about 9months delayed in speech and cognitive. Physically he is only a little delayed because of low muscle tone but seems to keep up pretty well. He stopped eating around 9 months old and has been eating strictly by G-Tube ever since. He will put some food in his mouth and suck on it but never really swallows anything. He likes primarily salty things. He drinks water from a bottle and we have just graduated to a sippy cup. He currently weighs 36 lbs and is 37 en. tall. His diet consists of 126 grms. Propimex-1, y 102 grms of Similac to a total volume of 30 oz. He receives 21 oz. by bolas feed during the day and the rest at night with the pump. His medications are Carnitine-6 mls 3 xs per day, sodium benzoate-4 grms per day, Flagil-1.6 mgs 2x per day, and Prilosec 3.5 mgs 2 x’s per day. Carson receives two hours per week of OT therapy and two hours a week of speech therapy. Carson has low muscle tone, but it is not severe. We see Dr. Abdenur every two months and we have all his Aminos and Carnitine and Amonia levels checked. We work with a wonderful dietician and we change his formula according to his body weight and his labs. We Love our Doctor and can’t imagine where we would be without his dedication and Love to Carson. We know that we are so lucky to have him.
We would love to communicate with anyone. Here is our e-mail.
Our E-Mail is [email protected] |