lleguemos al nuevo hospital donde íbamos a estar ingresados allí le pusieron un monitor mirando el corazom respiración el pulso ... y me empezaron a contar una cantidad de pruebas que le iban hacer a mi bebé.. yo solo tenía miedo ,mi bebé, y yo mami primeriza encima..me dijeron que tenía craneosentosis sagital y que cuando tuviera un peso adecuado lo operarian .. que miedo 😨😱 me inche a llorar no podía parar...tenía mucho miedo... mi bebé, mi niño, pruebas de todas oídos, vista, peso, tac, ecografias, radiografías etc... era todo una locura pero yo no me movía de su lado ni para comer pero ya me dijeron Vanesa tienes que cuidar de ti vais a estar un mes o más depende... me dejaron un sitio donde comer descansar si quería aunque yo solo lo hacía en la habitación de mi bebé junto a él dormía, también un lugar donde habían duchas que hay es donde descansaba por 10 minutos pero enseguida salía corriendo otra vez por mi bebé a la habitación no quería que estuviera solo suficiente tenía ya el...también le hicieron pruebas de genética para ver el porqué de su craneosentosis y hay es donde me dijeron que tenía un 13% de autismo pero que por eso no me preocupara ya que yo también tenía esa porcentaje que me concienciara más con el syndrome raro CUL4B.. solo hay 100 personas en el mundo diagnosticadas con ese syndrome .... miedo ? No más que miedo tenía yo no sabía a qué me iba a enfrentar ni lo se todabia bien a día de hoy.. pero es una lucha difícil eso si que lo sé... pues me dijeron que se sabía muy poco pero lo único que me dijeron es que mi bebé nunca hablaría se me derrumbó el mundo encima otra vez.... y también cuando le hicieron una de las ecografias para ver su cabeza también vieron que había tenido un iptus y que una parte de su cerebro no funcionaria nunca......😱😱😨😭😭 tenía tanto miedo!!!! Solo habrazada y habrazada a mi bebé y pensaba que porque a nosotros!! A día de hoy mi bebé ya tiene dos años y tenemos a casi todo el hospital que nos visita muchas veces hacemos terapias y yo soy su cuidadora tube que dejar de trabajar por el , tiene un atraso de un año y algo ahora mismo ... siempre le ago de profesora le leeo jugamos hacemos actividades salimos a pasear que le encanta, estuvimos en la primavera haciendo terapia a caballo le encantó 😊 junto a él aprendo muchas cosas yo también a ser muy paciente yo nunca lo había sido pero con el no se es diferente puedo ser la más paciente del mundo entero !!!! Es como si fuera una experta jejejje

On June 27, 2019 my beautiful baby was born.

On June 27, 2019 my beautiful baby was born everything was perfect... 3 days after delivery and we were discharged he was born with low weight and a week later they told us to take him to the hospital to see when he was getting better... the result is that he arrived that day and I went to weigh him, he had not put on any weight and I did not stop breastfeeding. ... but after all this another doctor came up and told me that my baby had to be admitted because they did not see a normal head, they had to look at him, my life collapsed in a moment many questions I asked myself, why my baby? Why do I have to go through this? But this is not the end of the story, the hospital sent us to another neonatal hospital... a week after we had been admitted there doing tests and they could not find the one that was happening.... we were transferred urgently in an ambulance to the two of us, I was so scared, they put him everywhere and a lot of cables! I was so scared, I didn't know what was going on yet...but a very kind doctor explained to me that it was just a protocol that they were putting everything in place right now in case something happened on the way, I was a little less terrified....Porfin after a while.

we arrived at the new hospital where we were going to be admitted there they put him on a monitor looking at his heart, breathing, pulse...and they started to tell me a lot of tests that they were going to do to my baby...I was just scared, my baby, and I was a first time mommy...they told me that he had sagittal craniosentosis and that when he had an adequate weight they would operate on him. . so scared 😨😱 i started crying i couldn't stop...i was so scared...my baby, my child, tests of all ears, sight, weight, tac, ultrasounds, x-rays etc...it was all crazy but i didn't move from his side even to eat but they told me Vanesa you have to take care of yourself you are going to be a month or more it depends..... they left me a place to eat and rest if I wanted to although I only did it in my baby's room next to him I slept, also a place where there were showers that is where I rested for 10 minutes but then I ran out again for my baby to the room I did not want him to be alone enough and he already had the.... they also did genetic tests to see why he had craniosentosis and that is where they told me that he had 13% autism but not to worry because I also had that percentage and that I should be more aware of the rare syndrome CUL4B. there are only 100 people in the world diagnosed with that syndrome .... afraid ? I didn't know what I was going to face and I still don't know it well today... but it is a difficult struggle that I do know... they told me that they knew very little but the only thing they told me was that my baby would never talk and the world came crashing down on me again. ... and also when they did one of the ultrasounds to see his head they also saw that he had had an iptus and that a part of his brain would never work......😱😱😨😭😭😭 I was so scared!!!! Just habrazada and habrazada to my baby and thought why to us!!!! As of today my baby is already two years old and we have almost all the hospital that visits us many times we do therapies and I am his caregiver I had to stop working for him , he is a year and something behind right now ... I always make him a teacher I read to him I play we do activities we go for walks he loves it, we were in the spring doing horse therapy he loved it 😊 next to him I learn many things I also to be very patient I had never been but with him it is no different I can be the most patient in the whole world !!!! It's like I'm an expert jejejjje

Presentó una imagen del día de las enfermedades raras ,ya que cada día en el mundo hay más enfermedades ,síndromes... que no se conocen. Muchas gracias por ocupar un ratito de vuestra vida leyéndomemuchas gracias os lo agradezco de corazón mis amigos de hive un fuerte saludo a todos 😊.

He presented an image of the day of rare diseases, since every day in the world there are more diseases, syndromes ... that are not known. Thank you very much for taking up a little bit of your life reading to me, thank you very much I thank you from the bottom of my heart my friends from hive, a big greeting to all 😊.