Desde los 5 meses de gestación de Lucas estamos embarcados en este viaje, en primera instancia por el diagnostico de Tetralogía de Fallot (cardiopatía congénita) y en segundo lugar porque a los 2 meses de haber nacido nos informaron que tenía Síndrome de Alagille. Al principio todo era muy confuso ya que al ser una enfermedad tan rara la información disponible es escasa, por lo que nos vimos obligados a buscar en la web toda la info posible y a la vez interrogar lo más posible a los doctores sobre diversos temas.
Puede resultar frustrante no tener todas las respuestas por más simples que parezcan,
aún no las tenemos todas, y seguramente no las tendremos, pero en este minuto mientras más podamos saber y entender sobre la enfermedad que nuestro hijo, más posibilidades tenemos para hacer que su vida sea mejor.
Quisiera que nadie pasara nunca más por algo como esto, pero como sé que esa clase de petición al cielo no se cumplirá creo que podemos ayudar poniendo a disposición toda la información que hemos encontrado o podamos en el futuro encontrar, espero que si alguna vez una mamá o papá está desesperado y haciendo mil preguntas encuentre este blog y aunque sea una lucecita muy pequeña ilumine su vida, o quizás sólo el hecho de saber que alguien más sabe por lo que estás pasando calma en algo la angustia, cosas así hacen la diferencia; lo sé, por eso espero que esto ayude.
Han pasado casi 11 meses desde que nació Lucas y no hemos parado. A veces pareciera que todo es tan complejo y casi imposible y de la nada las cosas se calman y logramos avanzar. Lucas está creciendo, fue operado del corazón en julio pasado con una lenta pero buena recuperación gracias a Dios, próximamente se realizará el primer cateretismo ya que una de sus colaterales se estrechó luego de la operación, su hígado esta estable igual que sus riñones.
El camino que nos queda por delante es largo pero tenemos fe y amor suficiente para sobrepasar los días difíciles y aprovechar a concho los días tranquilos.
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A beginning
From 5 months of gestation Lucas are embarking on this journey, in the first instance by the diagnosis of tetralogy of Fallot (congenital heart disease) and secondly because at 2 months of age reported that we had Alagille syndrome. At first it was very confusing as to be a very rare disease information is sparse, so we had to search the web all the info possible while questioning as possible to the doctors on various topics.It can be frustrating not having all the answers that seem simple, still do not have them all, and probably never will, but at this moment the more we know and understand about the disease that our son, the more chances we have to make your life better.Never want anyone spend more for something like this, but I know that that kind of request will not be fulfilled at the sky I think we can help by providing all the information that we have found or find us in the future, I hope that if ever a mom or dad is desperate and doing a thousand questions find this blog and even a tiny little light illuminates your life, or maybe just the fact of knowing that someone else knows what you're going through something calm anxiety, things like that make the difference I know so I hope this helps.
It has been almost 11 months since Lucas was born and we have not stopped. Sometimes it seems that everything is so complex and almost impossible to scratch and things settle down and we move forward. Lucas is growing, it was heart surgery last July with a slow but good recovery thanks to God, soon will be the first catheterization since one of its side narrowed after surgery, your liver is stable like their kidneys.The road that lies ahead is long but we have faith and love enough to overcome the difficult days and take advantage of quiet days.
From 5 months of gestation Lucas are embarking on this journey, in the first instance by the diagnosis of tetralogy of Fallot (congenital heart disease) and secondly because at 2 months of age reported that we had Alagille syndrome. At first it was very confusing as to be a very rare disease information is sparse, so we had to search the web all the info possible while questioning as possible to the doctors on various topics.It can be frustrating not having all the answers that seem simple, still do not have them all, and probably never will, but at this moment the more we know and understand about the disease that our son, the more chances we have to make your life better.Never want anyone spend more for something like this, but I know that that kind of request will not be fulfilled at the sky I think we can help by providing all the information that we have found or find us in the future, I hope that if ever a mom or dad is desperate and doing a thousand questions find this blog and even a tiny little light illuminates your life, or maybe just the fact of knowing that someone else knows what you're going through something calm anxiety, things like that make the difference I know so I hope this helps.
It has been almost 11 months since Lucas was born and we have not stopped. Sometimes it seems that everything is so complex and almost impossible to scratch and things settle down and we move forward. Lucas is growing, it was heart surgery last July with a slow but good recovery thanks to God, soon will be the first catheterization since one of its side narrowed after surgery, your liver is stable like their kidneys.The road that lies ahead is long but we have faith and love enough to overcome the difficult days and take advantage of quiet days.
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