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Evan M. – actualizado en noviembre 2020 Evan is now 13 años y ha mejorado mucho desde su última actualización en 8 years old. Si bien su alimentación no es buena y se niega a comer por vía oral, se alimenta predominantemente por sonda a través de una sonda de alimentación con botón de tecla de micrófono. Tiene una mezcla de Tentrini Energy Multi Fiber, SOS 25, MMA/PA Express 15 y Calógeno para calorías. Le damos bolos durante el día y remontamos 3 hours at night.
Thankfully, esto es lo único con lo que ha usado contraseñas. Él está entrenado para ir al baño (día & noche) desde hace unos años y lo está haciendo muy bien. Su habla / comunicación ha avanzado a pasos agigantados. & límites y, aunque todavía no podemos tener una conversación con él, puede expresarse con bastante claridad y comprende los comandos y las solicitudes. Le encanta ayudarme en casa haciendo pequeños trabajos en la casa..
Evan ama toda la tecnología, le gusta ver tv (sus favoritos en este momento son Friends, Dos hombres y medio, programas de cocina y dibujos animados) Película (s, musica y baile. Le encantan los animales y tiene una fascinación por los pingüinos.. Le encantan los libros y la lectura y le encanta jugar con nuestro perro Elmo.. Es un niño sonriente que ilumina cualquier habitación y tiene una risa tan contagiosa.. Tiene un entusiasmo por la vida como ningún otro y ama a la gente y la gente lo ama a él.. Es un animador seguro.
Si bien ha avanzado mucho, aún nos queda un largo camino por recorrer. Principalmente con su alimentación y actualmente también tiene algunos problemas de movilidad que necesitan soportes AFO a la altura de las rodillas al caminar.. Se le considera ‘grave’ con PA. La gravedad ha disminuido un poco después del trasplante, pero no importa lo bien que esté ahora., el futuro siempre es incierto con PA, especialmente ahora con Covid. Actualmente está siendo educado en casa y lo está haciendo muy bien a pesar de mi aprensión.. Su salud siempre seguirá siendo nuestra prioridad, se puede trabajar en su desarrollo.
Evan M. – updated March 2015
The transplant wasnt a ‘cure’ but is a huge help in managing Evan’s condition and giving the best chance at living a normal life. He can tolerate alot more protein which in turn helps his development and generally makes him look healthier. He is in his 2nd year in the local special needs school and he absolutely loves it. He runs out to the bus in the morning and always has a smile on his face wen he gets off the bus when he gets home! He loves the attention and being with others his own age. His speech and communication is coming along although we still can’t converse with him and his eating is steadily improving. Although foods still have to be pureed, he is open to trying new things and experimenting and playing with food whereas before he showed absolutely no interest in food and mealtimes.
Not everyone agrees with our decision to go for a Liver Transplant but even though the 1st year was tough we don’t regret our decision. Our thinking was that if something happened during or after the transplant at least we are doing everything possible and in our power to give our child the best chance possible to have a normal life. Life with PA is so unpredictable. Sarah (Evans mam)
———————————————————– Evan is 4 and he was diagnosed with Propionic Acidemia when he was four days old. normal pregnancy, normal delivery and evan arrived a healthy 7lbs 11ounces three days early. On day 3 he was getting very lethargic, he wasnt feeding and was breathing funny from his nose, like he had a cold. He was brought to the Special Care Unit by a nurse and we were told he would be back up soon so we presumed it was just to be checked out. An hour later, he was on a ventilator as doctors were afraid he would stop breathing. A number of tests were done and doctors in Cork narrowed it down to a Metabolic Disorder but they were not the experts in this field, The Metabolic Center of Ireland is in Dublin so Evan was transferred up when he was 3 days old where they diagnosed him the day after. Evan was in the hospital for 3 months until well enough to return home. Since then he has been admitted to the local hospital a handful of times, for flus, bugs and infections but thankfully since birth he has had no major decompensation. He has a good enough appetite and drinks his XMTVI Maxamaid orally during the day and eats about 6 of his restricted 8 exchanges of protein orally, sin embargo, anything he does eat has to be liquidised with no lumps whatsoever. He also has a continued feed during the night through PEG Tube. We travel to his doctor in Dublin every 3 months for check ups, where they take blood and check his levels are normal, and we speak to dieticians etc. Evan is a wonderful, happy, sociable, and boisterous 4 year old , he struggles with speech and communication which can get him frustrated and he has regular speech therapy, physio and occupational therapy. Evan has been on a waiting list for an Auxiliary Liver Transplant for 7 months now. |
Evan is now 8 years old. He had a partial liver transplant in March 2012. Whilst the 1st years was very tough, unfortunately he was diagnosed 6 months after transplant with Lymphproliferative Disease. A type of Lymphoma brought on by the immunosuppressants needed to stop his body from rejecting his new liver. He needed a few months of chemotherapy but thankfully got the all clear from this a few months later. Since this however, Evan has come along so so much.
He is still tube fed most of the time via a mic-key button in his stomach. His feed consists of Energivits, Nutrini and MMA/PA Gel and all medications we give to him via this tube. So even though he still picks up every bug and infection going and does have long bouts out of school and the odd admission to our local hospital the future is looking bright for Evan. There is no doubt life is tough living with PA, we do our best by our children.