My child did not fail in the prenatal check-ups and passed non-invasively. The chromosomal examination at birth is normal, but the child’s length is similar to that of Down’s child. The intelligence test is more than 6 months, and the doctor said that it is only about one month. The child’s IQ…

I will look up in 4 months and turn over in 5 months. Except for these two, other expressiveness has begun to recede. Toys and food are not responding in front of me, and I don’t want to reach out for it… I don’t know what to do.

Dongdong’s birth is almost the same as a normal child, but the good days are only one month. When Dongdong is full moon, he starts to grow hairs all over his body. At the beginning, I comforted myself that this is lanugo. As we grow up, our anxiety becomes greater and we started to take him to various major hospitals in Guangdong for examinations, blood tests, hormone examinations, MRI and other tests. From six months to two years old, every hospital said It is the phenomenon of returning to ancestors caused by genetic problems. Hair removal surgery can only be done when the hair follicles mature in adulthood. During this period of time, I have been in a breakdown. Although Mao’s child is cute, I am afraid that the strange vision and language violence of the people around him will hurt him. Later, we gave up the examination because in medicine, there is no body and intelligence. The defect is not a disease in the strict sense. During the period, my grandparents hoped that we would leave Dongdong in our hometown in Sichuan. After all, our income from going out to work is not high. Bringing a child will increase our expenses. My wife and I both refused. I think Dongdong is special, so you should stay if you are special. By our side, let our parents accompany him to grow up so that we can be more aware of his mental health growth. Although I am a new mother, I am willing to grow up with Dongdong. I used to care about the eyes of others, afraid of being looked down upon, and afraid of being different from others. In 2014, I had a most beloved baby, but I felt that God made a joke on me. I stubbornly hid the baby, hoping to keep him away from the crowd and not be seen. At that time, I was depressed, and complained countless times about the injustice of fate. Fortunately, there is a huge role model around me, she is brave, persistent, and constantly inspires me to make me no longer secular. Wife, thank you for letting me go out bravely. 1. Psychological changes Before Dongdong was two years old, we were very self-blaming and even unwilling to take our children out to play. We are all ordinary people. I don’t understand why God made such a joke with me. My heart was filled with dissatisfaction, resentment and anger, and I even thought about having another one. At that time, the performance was relatively negative, often because the child was too young to take care of, and in my words, “The child is so young, no matter how long you go out, you have to bring a bottle of diapers and change clothes. How inconvenient I am a big man. If you don’t accompany me out, I won’t take Dongdong out alone.” Refusing to take the child out for similar reasons, but if even parents despise their child, how should the child face himself? Later, I enlightened myself and began to instill in Dongdong that although you are special, you are also very cute. “God will close a door for you, and he will definitely open a window for you. When he closes the window for you, don’t worry. Next, I’ll turn on the air-conditioning for you.” While teasing myself, I try to adjust my mentality, face life with a more positive and optimistic attitude and face the children every day. I also take time to accompany my wife and go out to play with Dongdong. , They all specifically select places with a lot of people, such as parks, playgrounds, supermarkets, and so on. Gradually, we also let go of the burden in our hearts, and didn’t care what other people think of Dongdong. In the words of our wife, “Go your own way and let others say it.” After Dongdong was two years old, I often took Dongdong to play in Wanda Baby Playground alone, play inflatable castles at China Resources Plaza Playground, and fly kites at Kite Plaza. Seeing all this, I am also happy a lot. After all, the child is my own, there is no reason not to love, no one loves Dongdong more than me and my family. Dongdong has also become more and more lively and cheerful during this period. I have met many children. Most of the children are still willing to play with Dongdong. We also believe that Dongdong is right to live with us. Before he was three years old, Dong understood that people are different, that they are special, and even that they are beautiful and ugly. He said he was a handsome boy. He often said to his mother, “How did you give birth to such a cute baby?” “I am really happy for Dongdong. 2. What outsiders think of Dongdongdongdong’s growth has always been in the attention of others. Many people think Dongdong is cute, but there are also some people who look at monsters. We generally ignore this kind of people. But some people will do things that make people angry. I remember one time my mother took Dongdong to the vegetable market for breakfast. An old grandfather saw Dongdong. I guess he met such a child for the first time when he grew up. He took pictures with his mobile phone without any explanation. At that time, I went to work. Dongdong’s mother said that you should stop taking pictures, uncle. This will not affect the child, but he did not feel that he was doing something wrong. However, he became more serious and said that I wanted to take pictures. My mother was very angry and uncomfortable at the time, so she pulled directly. Dongdong left without eating breakfast, but the uncle ran out and continued to take pictures of Dongdong, scaring Dongdong to tears. At that time, my mother said why you are like this, what other people’s children are you taking, the uncle behind was on the bar, and said some awful things. At the time, my mother was very wronged, but no one talked about it. In the end, the good-hearted people next to him came to persuade the uncle not to do this, and to respect everyone before the uncle left. My wife and I have always hated those people who come up to take pictures. This really does not affect the children. After this, Dongdong went home and told me that others said he was ugly, and took pictures of him. For the first time, I realized that human words are terrible, so I patiently taught Dongdong “There are many good people in this world, but there are also many bad people.” Later, when I went to play outside, a kid saw Dongdong and asked him, “Why do you grow so much hair?” Dongdong said to the kid, “Then what is on your head? Shit?” I was really shocked when I heard this sentence. I felt that when Dongdong said this sentence, I was both uncomfortable and helpless. Since then, we have decided to let more people know Dongdong. Only when others know you, they won’t come to ask you again. We used the National Day holiday last year to take Dongdong to Zhangjiajie to play and go to other people. Go to more places to show Dongdong to more people and let him know that although he is special, he is also the same as everyone. Third, the solution during the period The first method we tried before the age of three was to shave it, but it will grow back up to three days after shave. The hair grows very fast, but when it reaches a fixed length, it stops growing. The second method uses a different brand of depilatory cream. The depilatory cream can only be used for about four or five days, and some depilatory creams can cause serious damage to the skin. The third method is the home laser hair removal device. This is too painful. I tried to use the laser to hit the calf, let alone use it on Dongdong. 4. What does Dongdong look like now? Dongdong is already five years old, he can have laser hair removal surgery at the age of fifteen, and there are still ten years to go. We have had a good five years and we have completed the first five-year plan. I believe you will have the rest of the time. Accompanying will be even better, and I always believe that there will be more people who support and encourage Dongdong.


By zhiwo

0 0 vote
Article Rating
Notify of
Most Voted
Newest Oldest
Inline Feedbacks
View all comments
8 months ago

I just lost my child last month and his life stopped at 5 months and 12 days. My husband and I have a very good relationship. We will get married after five years of love, and we will prepare for pregnancy. I was 26 when I was pregnant, and he was 30, in the prime of life. I was careful during pregnancy, exercised actively, and had a balanced intake of nutrients. Except for morning sickness in the first trimester, there is nothing uncomfortable. I gave birth to my baby son in April this year. Everything is normal at birth, and the child is developing well, gaining two catties every month, and the flesh is very cute. In July, he weighed 15 kilograms, and he had his father’s favorite lotus root arm. However, unfortunately it also started in July. At the beginning of July, the child had a fever+ cough, and the doctor checked that it was bronchopneumonia. Healed after taking medicine for a week. But at the end of July, it started to diarrhea, four or five times a day. But the stool is normal and the mental state is also very good. We thought it was breastmilk diarrhea. It would be better to take probiotics. In addition, the child’s mental state has always been very good, so we didn’t care. But at the end of August, the child started to have diarrhea again. After seeing the doctor three times, there was no problem with the stool test, and the medicine did not get better. We were distraught. In early September, in addition to diarrhea, the child started to have bleeding gums and small bruises. Who knows that this is actually a precursor to leukemia. The child was diagnosed with the disease on September 17 and passed away on the 18th. His condition deteriorated so quickly that I didn’t have a chance to save him soon. I still can’t figure out why my child gets acute leukemia. No one in the family of both parents has ever had leukemia, not even cancer. My husband and I don’t have any bad habits. My husband doesn’t smoke or drink, and the family has lived in a three-year house, which is not newly renovated. I asked several doctors, but couldn’t give an answer, and attributed the cause to “gene mutation”. A doctor said, “If I can know the cause, I can win the Nobel Prize in Medicine.” One month after the child left, my husband and I didn’t know how it came here. Closing his eyes at night is full of his voice and smile. Husband has to go to work and beat himself up every day. But I often touched his pillow to get a lot of wet, probably hiding in the night crying secretly. Every time I saw the child’s photo, the cremation certificate, and the words written off on the hukou, I couldn’t help crying. Thinking of his small person walking the Huangquan Road alone, I don’t know whether he is afraid of harm, whether it is cold or not, my heart is broken. I wish I had just had a nightmare, but the fat on my belly and postpartum hair loss reminded me all the time that he had been here, but he had gone. I really regret that I didn’t hug him more and kiss him more. Regrets that he is small, dark-skinned, and small-eyed. I regretted that when he was crying, I threw it to my mother-in-law and hugged him. I have never heard him call his mother. I want to give him the best things in the world. I really miss him. He is a very handsome baby with two cute dimples, and his eyes are crooked when he laughs. In the last hour of his life, he was too weak to drink milk. He held RT and looked at me seriously with his eyes wide open, and then tried his best to bite me RT. I was surprised to find that he had already had his first baby tooth. At that time, I had the illusion that he would get better soon. The aunt said, “The baby is really strong. He is still trying to grow up when he is so weak. He has teeth and wants to eat meat.” I desperately eat meat, eat everything he hasn’t tasted, and then breastfeed him, but he can’t drink anymore. Up. I hugged him and begged the doctor to help him. The doctor said it was too small and hopeless. I don’t want to just give up, take him to Guangzhou Zhongshan Hospital overnight. As a result, on the high speed, the child became weaker and weaker, his hands and feet became cold, but his face was burning hot. I didn’t dare to cry, I was afraid of crying, my tears were blurred and my eyes couldn’t see his final appearance. I have been smiling and singing to him so that he can remember his mother’s appearance and don’t get lost next time when I come back. But no way, he left. When I left, I shed three tears. I know that he still cares about us. Thinking about it now, he is really too strong. Even with diarrhea for so long, I rarely cried, did not show weakness, and laughed all the time, so all of us did not notice the abnormality. It was not until the diagnosis on September 17, that he seemed to know that he could no longer hide it, and he began to breathe out and had blood in the stool. He really loves us so much. He walked so fast. We prepared a lot of money for treatment, but it was useless. We must be reluctant to spend money. Whenever I think of these, I think he is a role model for my life. I will always love him, always love him the most. Later: I have received comfort and blessings from many friends, thank you all. When I was a child, I watched the drama in the deep rain and Keyun in the rain. After losing the child and stealing the child in the street, I only felt terrible. But now I can understand her mood very well, because I can’t move my eyes away when I see a child who is a few months old. I stare carefully, imagining that my son is also so big, so soft, and so tender. Although I can’t hold him anymore, it’s better to look at me. I forcibly resisted not holding other people’s children, fearing that I would also become a crazy Keyun, turned and left, crying into tears. After the child was gone, we couldn’t bear to bury him in the ground, lonely and dark. He doesn’t like dark, he used to cry when the light was dark. So we scattered his ashes to the sea, hoping that he can get freedom and light, and he can go with the wind to see the scenery he has never seen before. I can even feel that he is always by my side. Mom will be strong and will prepare with Dad for your return. Thank you again for your concern and encouragement on 2019.10.27, I have received it. The baby will always be my husband and me the most dear person, and will always be my precious eldest son. I hope you can cherish the people around you and don’t regret it if you lose it like me. If you have a baby, please hug the baby hard and kiss him. Because I can never hold my baby anymore, I really miss him very much. On 2019.10.28, a friend asked how to look at the blood routine and knew that it was leukemia, that is, the white blood cell index was hundreds of times higher than the standard, and the platelet was below the standard. Some friends said why don’t you go see it sooner when you have diarrhea. This is also the most painful place for me. At that time, I took three doctors to see, but none of them found it was leukemia, and treated it as ordinary diarrhea. I am sorry for the child and delayed his treatment. I should have sent him for a full-body examination earlier. The child used to sleep next to me. He turned to sleep. I missed him looking at his back. Now I have no chance to accompany him to sleep. More on 2019.10.30, I have read every comment made by netizens. Thank you for your comfort and encouragement. I am very useful. One of the netizens said, “The body will turn into the purest ashes, the soul will turn into weather into clouds, trees into birds, and eternal freedom.” Mom’s eternal baby, Mom hopes you can get love, freedom and freedom. Bright, even if you are not by your mother’s side, your mother hopes that wherever you go, you will be a hot land, and all the people you will meet will be good. There will be gods playing with you in the sky, and your mother will take care of yourself, so don’t worry. It’s cold, you have to add your own clothes, and when you have the opportunity to go down, come back to your mother as soon as possible. Mom is waiting for you. Even on 2019.10.31, I cried for another night last night. I really can’t forget my beloved baby, even my husband can’t comfort me. I stopped working since I was pregnant and prepared for his birth wholeheartedly. I bought all the things he used after reading the evaluation. The vaccines and other strategies I made were also actively shared with the mothers. After the child left, I retired all the Baoma groups and closed the circle of friends. I really want to let go of all this and start again, but it’s too difficult, closing my eyes is all my pleasure. I cried too hard a few days before 2019.11.03, and my eyes were so painful that I couldn’t open them. I really want to go with the child so that I can go to heaven to take care of and accompany him. My husband found that I had the idea of ​​committing suicide. I was very worried. Seeing him still carry the responsibilities of the family so firmly, plus reading many comments from netizens, I felt relieved a lot. Thank you everyone, I am much better now, and I will live well. I’m happy to bite my RT one last time. It must be to let me remember him and let me live a good life. It also marked me. Next time I come back, I will choose me as my mother. So he certainly doesn’t want me to be decadent and degenerate. My body gave birth to him for ten months, and I must cherish myself so that when he comes back, I will have a strong body to take care of him. Even on 2019.11.10 last night, I dreamed of happiness for the first time. He was fat and tall, and he turned over and showed it to me with a smile. He is telling me that he is doing well, so I can rest assured. This answer will not be updated in the future, because I want to start my new life. I will share some of my life and thoughts on Zhihu. Those who are interested can pay attention to me. Let’s live hard together.

8 months ago

Not my child, but my brother’s child. Before I was born 6 years ago, there was no problem with all the prenatal check-ups. Probably, the hearing cannot be detected by the normal prenatal check-up. The whole family had been looking forward to it for a long time before I was born. I gave the baby a nice name. It was really rare when I was born. Beautiful children, doctors and nurses like it very much, but the child has a sky blue eye, which is the same as the eyes of foreigners. At that time, they thought it was a newborn baby. I didn’t have a hearing screening when I was born, but the hospital suggested that I should check again and then check again. It seemed that I went to a professional hearing test agency to conclude that on the day that the severe hearing loss learned the news, my brother said to me on QQ, “My sister, I I don’t want to live anymore” to startle me, I said what’s wrong, don’t scare me. He said, “The child’s diagnosis is here, and my niece’s hearing loss is severe.” I cried and cried loudly. I was so frightened that my colleagues were frightened. Then I started crazy. Baidu’s information about congenital hearing loss. My niece’s hearing loss, ah, yes. The concept is that she can only hear the decibel sound of cutting the marble calling my mother, saying that my brother and sister-in-law have been crying for a day at home holding a headache, and my brother is screaming in the child’s ear like crazy, using pots and pans. The child knocked on the ear, but the child did not respond. . . Later, after exhausting all his energy, the door was closed, and the child was frightened and cried. Fortunately, my sister-in-law quickly calmed down, inquired on the Internet about diseases, the state’s subsidies and policies on children’s hearing, and submitted various materials and certifications. Later, I comforted my parents. Fortunately, hearing is the only organ that can be replaced in the current medical technology. The child has Waddenberg syndrome. Blue eyes are one of the signs. Thanks to the national policy, the child underwent cochlear surgery at the age of 1 and followed up with rehabilitation training for several years. Now she has grown into an ordinary healthy little girl. Although she is slightly inadequate in language expression compared with normal children, she does not Prevent her from being a normal little girl who everyone loves. In the end, my aunt loves you, we all love you so much~ I did not expect to receive a lot of blessings and encouragement. Now the baby is a stinky, dazzling, loving kindergarten who loves to dance and laugh. The 6-year-old kid in the kindergarten who loves to dance and laugh is very accurate. I have to thank so much. Days and nights of rehabilitation training days and nights except God-given blue eyes, there are no other symptoms of Warrenz’s syndrome. The hair is natural dark lint. It was very sudden at the time because there are no people with hearing problems in both families. Children’s cochlear surgery countries have free policies. , It’s still very expensive if you bear it yourself. I started with 200,000 and I thanked all my brothers, sisters, uncles and aunts for her.

8 months ago

I have received a lot of encouragement and I am very touched. The baby was unpacked and the needle was removed 2 weeks ago. My father was on a business trip and the baby’s grandfather accompanied us. Pulling it directly with the pliers, the baby cried heartbreakingly, and my grandfather cried next to him. I helped the doctor press the baby and didn’t care about crying. I was really strong a lot. The three fingers seem to be well divided. After half a year of recovery training, the right hand can have 80% of the functions of an ordinary person. I was playing with her in the playpen last night, and she suddenly walked towards me by herself, 6 steps, I was so excited, although I wanted to video later, I would not let her go again, and continued to crawl around. I made up for her one-year birthday at home today, and it was arranged late into the night last night. I didn’t feel sleepy at all, and I recalled every bit of this day. I am very grateful to this child, it is her that made us all grow up. Today I have invited many people, including the baby’s rehabilitation doctor, and I am very grateful to her for her repeated help and encouragement. As parents, our lifelong goal is to help our children find the noble person in their lives. Fortunately, we met her. She is not a well-known rehabilitation therapist, and the institution is also a small institution, but she is very dedicated and loves my girl very much. She will be angry because of my frustration, saying that even if you can’t stand up, you can take her to see the world in a wheelchair. She asked me to take my baby out every day as long as the weather is good. She brought her son to play with my girl, to recognize a goddaughter. Our whole family is very grateful to her. My dear baby, you are the most beautiful girl in mom and dad’s life. Mom and Dad are working hard to build a happy castle for you. The story that belongs to you has been opened. The story may contain all kinds of flavors, but it must be beautiful; there may be wind and rain, but there must be bright sunshine to welcome you~~ Mom and Dad bless you with health, peace and joy. The following original answer is that my husband accompanied me during my childbirth. We are all waiting for the first family portrait at the moment the child is born. At the moment the baby was born, before he heard the cry, the first sentence of the midwife: “Where did you get the checkup?” “It’s with you,” the husband replied directly. After a while, the baby’s cry came. I keep asking what’s wrong with the baby? My husband kept holding my hand and said, “It’s good, but the right hand is missing two fingers, and the remaining three fingers are two together, and the palm is smaller.” In order to prevent me from bleeding, the medical staff kept asking I am calm. At this time, the baby went out, and later I learned that I was born with respiratory failure, and was critically ill, and went on a ventilator. My dad later told my husband to cry in the corner after going out. In confinement, I waited for my baby to come home, and I was also mentally building. When the baby came back 2 weeks later, I touched her right hand and told her mother loves you so much. But all this is not over. 42 days of physical examination, high muscle tone, abnormal follow-up and hearing. Go to the rehabilitation department. I also officially entered postpartum depression. I took her to see the doctor like crazy. 3 months, 4 months, the last time the gms report of the rehabilitation department came out, the doctor said that 90% of the child had cerebral palsy. My innocence really collapsed. This month I decided to leave the rehabilitation department of the hospital and go to the institution. I was lucky enough to meet the baby’s rehab. He was in the institution for an hour, and I would do it on my own for another 2 hours. While the rehabilitation practitioner is helping the baby, he is also healing me. In four and a half months, she laughed out for the first time, and in five and a half months, the baby turned over on her own for the first time, and I returned to work and got out of depression. At 9 months, the baby graduated from a rehabilitation institution. I took her to evaluate the doctor in Shanghai and concluded that she is a great child. I was crying. After 11 and a half months, I took my baby and went to Chongqing Tian Xiaofei for combined surgery. Now the baby is almost one year old, and the right hand has not been unpacked yet. Our whole family is waiting for her to make up for her first birthday after unpacking. We often take her out, and we also encounter children shouting in public: “Why is her hand like this?” We know this situation cannot be avoided. Therefore, we must face it positively. We have experienced a lot this year. Just like my mother asked me: “If the checkup knows that her hand is deformed, do you want her?” “Yes!” “Then don’t think so much, just love her.” When you were in your mother’s belly, there was a monster It just happened to get in from my mother’s mouth. You are injured in a fight with monsters to protect your mother. You are a brave baby. Mom loves you!

8 months ago

In some places, it takes 100 days for Shanxi people to confinement. Today is the 41st day of my confinement. This is the 41st day when I have a congenital clubfoot and bipedal female treasure. Unfortunately, the child is not perfect. Fortunately, the small shortcomings can be made up for. I am a nurse and I was in a normal relationship. When I got married almost two years, I found that I had not been sick during the whole pregnancy and had not received injections and medicine. Except for some specific examinations, they were in the prescribed hospitals. All other examinations were in our hospital. It’s normal. The only thing that B-scanners often mention is that the femur is shorter (because my height is 167 is medium, my love is barely 170, and I am afraid that the child will be lower with the father) All check me I insist on doing self-finance and not at my own expense. I do the last color Doppler ultrasound in the third trimester. The amniotic fluid is low. It is recommended that I be hospitalized and use some means to intervene. I can’t wait for the expected date of delivery (1 drop of oxytocin 2 cesarean section). Two days and one night of pain, I walked in Guimenguan for a 38+5 term but gave birth to a low birth weight of 2300 grams. I grabbed a defective child and came back. The umbilical cord was not cut and the delivery bed was not laid. My colleague told me the possibility of Bao’s feet. There is a problem, but tell me that the problem is not big. Don’t think of it too much. When I go back to the ward, I see the child’s feet collapse instantly. This is the child I gave birth to desperately. Why is it so that everyone else can give birth to a normal child. Why can’t I? During this period, I didn’t care whether I was confined or not. I tried my best to check the information on the Internet. I washed my face with tears all day. Although it was not my own cause, I also blamed myself for privately chatting about the author’s being a child when I saw a child with inverted feet on Douyin. Mothers with varus feet pull in a group of varus feet across the country and see that these babies are working hard to treat. In fact, it feels like finding an organization. This is a long recovery process. It takes four or five years. The possibility of recurrence is also very real. I’m especially afraid that she can’t stand normally, walk normally, can’t run and jump normally… I feel that my heart will probably be hanging for four or five years, Bao Bao, when her full moon, my sister helped her find a treatable hospital in Zhengzhou for treatment for Bao. The picture shows the appearance of the foot that has been in a plaster. It is particularly obvious that the treatment is expected to be particularly active to receive treatment. However, because the baby’s legs cannot be stretched because of the plaster, I have always wanted to kick the legs like a normal child. The cause of the plaster has been fruitless and the belly button has been affected. I was forced to squeeze it out for fear that it would not return to the umbilical hernia, and I had to undergo surgery. Also, because of the plaster, diapers cannot be used to wear diapers, which made Bao’s butt red and crying, and Bao’s lower body has never worn his trousers. Although the polymer plaster used for plastering is lighter than ordinary white plaster and has better air permeability, but it is still affected by the elbow. Another two hours is the 42nd day of my baby. I hope that my treasure will receive treatment on time. The difficulties can be overcome. When you see her unconsciously smiling for more than forty days, when you breastfeed her, she chuckles, chuckles, and sips, when you feel her little hands are getting harder and harder to reach out and want to touch, she is working hard When I grow up, why don’t you work hard to grow up with her? Let’s work hard to learn to stand and learn to walk. Hope everything goes well. I hope that when I post back, my treasure can run and jump.

8 months ago

Human affairs can’t stand scrutiny, and each and every one of them hides grievances. I have been in love with my lover for ten years, getting married, preparing for pregnancy, getting pregnant, taking care of me every day, three dishes and one soup, taking a walk after a meal, eating fruits, working on time, and every morning my wife wakes up to eat while listening to prenatal music. Check on time, everything is in order, and checkups are normal. The child was born, seven catties and ninety-two, a cute big fat girl, I danced happily. Because of work, I had to separate from my child after the full moon. I am looking forward to reading every day, and I can’t hold the video every day. It lasted until the child was more than four months old, and I took the child and the family to live with, (I myself particularly like children, and my fat girl really became my heart, I thought I could give her everything). This is more than five months, the physical examination is normal, the baby can eat and sleep. By eight months, the child will not be able to crawl, and adults think that some children may be late, so they don’t care. Until one year old, the child still can’t crawl or walk, and can only barely hold on to stand. We started to worry, went to the hospital, checked, blood tests, bone density, brain MRI, no results, the doctor concluded, developmental delay . The hanging heart was let go. I especially like to gnaw corn. This is when I was over one year old, and I couldn’t see anything unusual. When I was one and a half years old, the child couldn’t speak and still couldn’t walk. He could only pronounce “dad”, “mother” and “grandma”. I repeated a comprehensive examination again, and the child is normal in all aspects. The conclusion is still developmental delay, but I think the problem is not that simple. The days of rushing to the hospital have become commonplace. During the period, the children were enrolled in early lessons. We insisted on whether it was an examination or a class. The stupid bird flew first, and we, a lazy girl, would be able to fly one day. It lasts until more than two years old, and the child needs not to make the slightest progress, and can only walk crookedly for a dozen steps. I can’t walk, but I can ride a small bike, and my personality is very cheerful and lively. Later I went to the Neurology Department of NJ Children’s Hospital, where I was a series of examinations. The sorrow and sorrow during this period was in my heart. I felt distressed for the child. I thought about giving up and let the child go. Naturally, but not reconciled, I always have to find out why. Until the video EEG results came out, two possibilities were given, one is epilepsy, and the other is “Angelman syndrome”. (Baidu can check) This symptom is also accompanied by epilepsy, but you need to do a further diagnosis. Genetic Testing. The test cost is 10,000 yuan, and the doctor recommends that the gene strip be checked first. This is a rare congenital disease caused by gene deletion mutations on 15 good chromosomes, and only Beijing and Shanghai can check it. Next, pay money, draw blood, and send samples to Beijing to wait for the results. This result will take more than a month. long wait. . . The result is normal, and then pay a fee for genetic testing. It takes three months. Suffering is like waiting for the sentence, but the child cannot be left alone in Zhangda. At this time, we thought of Chinese medicine, so we started our journey to Jiangsu Provincial Hospital of Traditional Chinese Medicine in the past few months. Acupuncture, moxibustion and massage, I can’t bear to say, every needle seems to be stuck in my heart. My mother and I grabbed her hands and feet, hugged her head, the doctor did acupuncture, we cried heartbreaking every time, calling “grandma” and “daddy”, she cried, I cried, how can a big man cry Holding back tears in his eyes, then swallowed into his stomach. This is the most tormenting three months, physically and mentally exhausted. The child is also full of fear of the hospital. Finally, the result came out, gene point mutation, Angel Man syndrome. This disease has only been included as a rare disease in China in the past two years, and it is unheard of by the vast majority of people, and there are very few medical records in China. When we got the result, my love and I planned to conceal it, and we cried in each other’s arms. It was like venting our grievances. At that time, when the doctor said it was cerebral palsy, we cried, and when the doctor said it was autism, we also cried. After going through various tests, we still gave out facts that we could not accept after the evaluation. There is nothing we can do except for the catharsis of crying. We still don’t want to accept our fate and ask a friend to hang up on the expert account of a dean in Shanghai. The answer given is that there is no medicine to cure, and there is only one way to recover, but the effect is minimal. We need to put our minds right and be prepared. fetal. Give her a company in the future. The bitterness, grievances, and stubbornness in my heart are tearing me away. I just told myself that I can’t cry this time, just pretend to be strong! ! After bidding farewell to the magic city, after returning, there were a series of inspections, issuing certificates, and relocating the registered permanent residence in order to recover the children here. The grievances and questions during the period will not come together. My spouse and I have to work to pay for the huge family expenses. We are ordinary wage earners, car loans and mortgages are 7,000, currently renting a house is 1,500, children’s rehabilitation costs are 6,000, and there are living expenses. With subsidies, the mother takes the child to recover, wakes up at 5:30 in the morning, and takes the bus across the river to the city to recover at 6:30, day after day. Our family is like cogs close to each other, turning constantly just for maintenance. Many people advised me to be cheerful, yes, I still smile every day, work hard, hope for my life, and smile at the people around me, but I don’t feel happy in my heart. The lack of the child is my biggest lack. The heart is missing, how real happiness is. Many people advised me to have a second child. It’s easier said than done! No matter, take this question to ease your mind. Life has to go on, we need hope to live! Finally, I will show you my heart, my favorite little angel, she may be the angel God bestowed on me! I also hope that everyone can pay attention to rare diseases and give these children more kindness and patience.

8 months ago

It’s really uncomfortable. No matter how good the medical technology industry is, it can’t completely guarantee that the child is healthy. If my son is alive, he should be 28 years old. He is a smart, beautiful, and considerate child. He is 5 years old because he can’t jump, so he went to the hospital for a diagnosis of progressive muscular dystrophy. Experts told me coldly: The life limit for cancer that does not die is 18 years old. The countdown to life at 5 years old. After a long medical consultation, all the treatment options were tried, but to no avail, it accelerated the course of the disease. After two years of resignation, life was a mess. I don’t think this can be done. His life is short, but I don’t want him to regret it. I changed my career direction and chose to start from the most basic level of medical sales, which not only facilitates the care of children, but also learns more about new medical technologies. I registered my own company three years later. My child was admitted to the children’s hospital ICU for 6 months due to respiratory failure in 2007. Later, under the guidance of a doctor, he got on a small ventilator and turned the children’s room into an intensive care unit. I was also counseled As a nurse, the child persisted for another 3 years. Some people may ask, is there life value in this way? Let me tell you: Yes, my baby can only move his little finger. He is still reading classics, reading books on science and technology. When his brother visits, he will arrange food orders. He has a tube in his nose and cannot turn over, but his soul is alive. He will care about you, mother, why are you upset? Over the years, I have been destined to think that life is set, he is here to change me, and all I am brought by him. Now, in my 50s, I have adopted a baby boy by chance. My baby is back and I want to start again.

8 months ago

Let’s talk about my baby, the baby I had after half a year of marriage with my husband. At that time, all kinds of examinations were done. Even after doing it in a public hospital, I went to a private hospital to do it again. As a result, the baby was only born 15 days ago because it is always Writing with a small fist, I did a brain CT and found that the subarachnoid of the right side of the brain was widened. At that time, the doctor recommended to continue to observe, saying that many newborn babies are like this. Now that I think of it, I really hate this doctor. , Quack mischievous! Then he went home and waited. During the confinement, the child vomited up almost every day, and he couldn’t sleep well. It’s okay to hold it. He woke up after less than half an hour after leaving the confinement. In the confinement, he would sleep every day except when he was hungry, but basically did not wake up. At that time, it lasted until the child was four months old before finding out that the child was better. Four months later, the child stopped sleeping and could make a laugh, but a new problem appeared. Many babies have already erected their heads very stably at the moment. My baby basically can’t stand upright, so he picked it up and leaned back and asked the elderly at home. Saying that it’s normal, I didn’t think about it like this. After five months, my head was relatively stable, but I found that the child didn’t want to grab or grab the toy. If I let it go, just lie down quietly without crying or making trouble. That’s it. I really couldn’t bear it, so I went to the hospital to have an MRI appointment, but I didn’t get in line and came back. Because of this, my mother-in-law told me that the child was not sick. It’s okay tonight, okay, after six months of this, many babies will turn over. My house still lie down softly and still doesn’t reach out for toys. When I was six and a half months old, I couldn’t help it. I was furious with my husband and forced the child to go to the hospital for an examination. It turned out that the child was really sick. Now I still remember the words of the doctor that almost sentenced me to death, “Your child has cerebral palsy, please go to recover quickly.” Returning from the hospital to her mother-in-law’s house, the stupid mother-in-law still said silly things. You’ve checked everything, how can you still give birth to a child like this? The first time I got married that day, I was so angry with my in-laws that I smashed everything at home. Then I cried for a while in my arms, and embarked on the road to recovery for my cerebral palsy child. In the first year of recovery, my father-in-law and my mother-in-law did not support me. I was marrying away and my child’s grandmother couldn’t help. My husband earned rehabilitation fees in other places. I went back two days a month. I took the child to the provincial city for rehabilitation alone. I rent a house outside, every day I carry my 7-month-old child from the rehabilitation hospital to the rental house. I am exhausted. There is a small park next to the rental community. I often pass by the lake in the park with my child. I thought about it more than once. The idea of ​​jumping off, but fortunately I persisted. In this way, from the spring of 2017, to the end of 2017, the child went from standing up to sitting to starting to practice crawling. He was alone in a foreign country and saw the warmth and warmth of the human relationship, the world is cold, and slowly strengthened, despite what happened during this period. Many things, I still remember a drunk knocked on the door one night, I did not open, the man screamed while hitting the door outside, I hid behind the door, with a kitchen knife in one hand and the other hand to the police, and then the drunk scared away. There were also a few times when my father-in-law instigated her husband not to treat the child, and told me that it was not possible, and then thought about what I would do if her husband would not treat the child. I had a fight with my husband several times, and my natal family also called I asked, but I always refrained from crying. Of course, there are also heart-warming passers-by who feel that I have a hard time holding the child and they want to take me there. There are also patients in the rehabilitation area who usually help a lot, just like that. In the first year of recovery for the child, while the child is getting better step by step, I have also changed from a simple college student to a real mother! In the second year of recovery, the child started to practice crawling. This year, there was no one to help, but I had learned to face everything alone. I found a co-rented mother who recovered together. The situation has improved a lot, but the most tortured is still The child was forced to crawl on the ground every day. He was sick and hospitalized almost every month. I went to the hospital to look after him by myself. In this way, in August 2018, the child finally learned to crawl. I was also relieved. At this time the child is almost two years old, can crawl at the beginning, and can’t speak, has been left far behind by normal children, every day to take him on the way to recovery, I kept watching those lively and cute, bouncing. My child, I thought I would die if my child was like this, but then, the road to recovery is too difficult, I have to continue walking. After I can climb, I will learn to stand, learn to speak, learn to recognize, and walk step by step. Finally, in the Spring Festival of 19, the child has learned to walk. I don’t know what the expressions of parents and mothers look like when normal children learn to walk. Anyway, my baby When I could take the first step, I cried with joy, cried for my sadness over the past two years, and cried for my baby finally being able to go! Things are getting better in the future. In 2019, the child is getting better and better. The husband has also been transferred to our recovery city. He can help a little bit. After the child can walk, he talks more. Now he is more than 3 years old. Can spell 30 yuan picture, can follow me to read English, know how to eat and drink Lazar, although I can’t keep up with normal children, it’s already a reward for me, although he still needs heart surgery, it’s relatively expensive Say, it’s not a big problem anymore. I’m still rehabilitating now. According to the hospital, I’ll be able to go to kindergarten next year after I recover. I look forward to that day! Finally, attach a profile photo of my baby, I wish my baby and everyone’s baby grow up healthy and happy!

8 months ago

My daughter was actually not discovered when she was born. When she was about 10 years old, a friend accidentally found out that her daughter’s walking posture didn’t seem to be the right way. After that, I went to the most authoritative hospital in the local area for a check-up. A CT scan was taken. It was said that he was suspected of cerebral palsy. Ask her intelligence. My daughter was in the 4th grade at the time, and her grades were very good in the class. There should be no problem with intelligence. Later, I took the film to Huaxi to see a doctor, but there was no diagnosis result. It was 2007. After the 2008 earthquake, my husband and I were fighting on the front line of earthquake relief. No one took care of my daughter, so my grandparents took them to Chengdu. My sister-in-law worked as a teacher in a primary school in Chengdu, saying that Yuyu’s legs seemed to be getting worse. It happened that my mother’s friend’s son was doing an internship in the orthopedics department of West China Hospital and asked him to show him. From the cervical spine to the caudal spine, we performed 4 CT scans of the spine, and the diagnosis was diagnosed as spinal vascular malformation, which was in the thoracic spine. The doctor in West China, neurosurgery, surnamed He, but his name is hard to remember. It is said that this disease is congenital, the cause is unknown, and the onset is high paraplegia. Like Zhang Haidi. At present, only Professor Ling Feng from Beijing Xuanwu Hospital is the authoritative person, and Huaxi has done very little at this point, calling us to Xuanwu. Bring the film and the case, and hung up the expert number of Professor Ling Feng’s best student Zhang Hongqi. Professor Ling Feng does not perform the operation himself now. Professor Zhang Hongqi is also an outstanding expert and was further diagnosed. Interventional surgery was needed, but there were no beds. We were arranged to be hospitalized in the Armed Police General Hospital and waited for a bed. After waiting for a week, we did not wait. Later, I asked people around and finally added a bed in the corridor. The operation is a minimally invasive operation. An opening is made in the artery of the left leg, and a long thin catheter is inserted into the spine to inject interventional materials to block the deformed blood vessel. The doctor said that my little girl is very strong. Although she is under general anesthesia, she still suffers from pain. Her daughter did not say a word. Distressed. My daughter has been very obedient since she was a child, and she didn’t bother to raise it so much. She didn’t know she would get this disease. (Pause for a while, and continue to write later) Dr. Xuanwu is very busy and basically doesn’t have time to say a word with you. Before leaving the hospital, simply explain: come back during the winter vacation. (We went there during the summer vacation). Interventional surgery will also be done next time. So the winter vacation just started and went again. It was still not easy to register, and after waiting for half a month, I finally got the bed. Except for the outpatient service, you can see Professor Zhang Hongqi, and only the doctor in charge is usually the only one in charge. I went to wait for Professor Zhang at the entrance of the hospital in the morning. Seeing the door, I called the professor and didn’t stop. I asked as I ran how many interventions my woman would need for this disease. I replied, not necessarily. After the intervention, I will eventually have to undergo surgical resection. This suddenly scared me. My family rarely gets sick, and I feel scared to have a spinal operation. A patient in a ward of the Armed Police General Hospital for the first time, from Ansteel. My daughter is three years younger than mine. She has cervical spinal vascular malformation. My mother is from Ansteel Hospital. I contacted another student of Professor Ling Feng of Shanghai Huashan Hospital with an acquaintance. , Called Zhang Xiaolong. It turned out that Xuanwu Hospital also said after the intervention, that it would be done, but Huashan said it was not necessary. In addition, Xuanwu’s registration and medical treatment were too difficult, so I took the film and the case to Huashan alone and found Zhang. Huashan Zhang watched the film and the case and said that they did interventional surgery without surgery. Although they could not guarantee that all the abnormal blood vessels would be eliminated, it would not affect her future life. I think I want this result. Resolutely and her husband went to Huashan with their daughter. The daughter was 12 years old. When signing the surgery, Hua Shan Zhang said that her daughter’s malformed blood vessels are complicated and the blood vessel walls are very thin. If the blood vessel ruptures during the operation, it cannot be rescued and it will cause high paraplegia. Is the operation still done? My legs are soft and I can’t decide. Husband was calmer than me at this time, saying, I still have to do it. About 3 hours later, after 9 o’clock in the evening, my daughter was pushed out, saying that the operation was a success. Until 12 o’clock in the evening, my husband called me to go back to the hotel to rest first, and called to replace him in the morning. At around 3 in the night, my husband called and said that the situation was not good. Not far from the hospital, I hurried over. The doctor explained that I had an MRI to see if there was any bleeding. If it was bleeding, it would be over. I had an MRI early the next morning. I said that the blood vessels were not broken. I breathed a sigh of relief. I analyzed the reason and said that it may be that there were more embolisms in the abnormal blood vessels, which improved the microcirculation of the spine and caused the lower limbs to lose consciousness. …I don’t know what to say.

8 months ago

The maternity check-up is no problem, and the birth of congenital heart disease. The very young one had frequent colds and fevers at birth. At first, I thought that the baby’s resistance was not good, so he went to the county hospital to get water, but it didn’t get better and developed into pneumonia. He was transferred to the provincial hospital. After a series of examinations, it was confirmed that the baby was congenital heart disease. It was only more than 3 months at that time, and I felt distressed. I am not her mother and I feel distressed. I ran to a few hospitals, and some doctors suggested that the operation should be performed at the age of one year. However, after the pneumonia resolved, the fever soon started. After explaining the situation to the county hospital, the county hospital no longer provided water. Let us go to the city hospital. Observe, it was really late that day, helpless. When I was 6 months old, I went to the provincial hospital to find a doctor and was hospitalized for observation to prepare for the operation. During that time, the baby was in good health, but after the operation date was set, the days passed, and my heart seemed to be held up all the time. On the day of the operation, my sister cried after she carried the baby in. I don’t know that it is really terrible. Her father will look at the electronic display screen soon to see if the baby is in the operation. I was mentioned before that I didn’t feel that much during the operation. It was my turn to wait at the door of the operating room. I could only wait. It was hard for every minute and every second. If I could, I would rather I get the knife for her. When I came out, the anesthesia had not yet passed. The small one was lying on the bed. We took a quick look and were pushed into the ICU for a week. The doctor told us that the operation was a success. Later, after chatting with the doctor, I learned that the heart loss during the operation was a little bigger than that during the examination. If it is bigger, there is no salvation. Fortunately, the operation was early. I felt a sudden shock, really scared. One week after I came out of the ICU, I couldn’t get water or food. Besides, the wounds hurt. There were a bunch of tubes on my body. The baby cried a lot. I didn’t laugh at that time. I blinked at her before and she laughed stupidly for a long time. , Now how I tease her, I can’t laugh. I feel distressed, I really feel distressed, and being a mother must feel even more distressed. Hard days can always pass. At ten months, the baby’s wound was almost healed, and he was already a giant panda in the family, and he had no fever anymore. The scar on my chest is hard to get rid of, and I feel uncomfortable every time I see it. However, I recovered quite well. Once I went to the hospital for a checkup with diarrhea. The doctor listened to the heartbeat. Later, he told the doctor that he had had a heart operation before. The doctor was surprised. He said that the heartbeat was normal and there was no noise. > The stinky baby has learned to take the bottle by herself. The aunt said that she is very pleased that she doesn’t need to feed her, just throw it to her after making it. I ate butter cake at home. I was afraid that I could not digest it too much. I tasted it and took it away. I cried hahahahahaha. In short, the baby is very healthy now. After reviewing twice, the doctor said that the recovery was great and thankful.

8 months ago

Does anyone remember this answer? . . The first time Xianxin did not find out that she died after birth, her second pregnancy stopped, and now she was pregnant for the third time. Yesterday, the heart ultrasonography detected the problem. The doctor asked the sheep to wear it and ruled out the chromosomal problem. It was basically no problem. Does anyone understand? Can you tell me what Dr. Xin Chao said yesterday that you had a venous problem last time and this time it was an arterial problem. Don’t be too nervous. It’s not as serious as last time. It was light in the heart. The whole person is very broken, why is it always like this, and it is eccentric, can’t I have a healthy child! It can’t be fine, no problem! ! ! I don’t know how to ask when I see the report. A good doctor understands and says that the blood vessel position is different from that of ordinary people. The destination is finally correct, and it usually doesn’t affect it. It becomes worried about whether it will affect future life (although The doctor said no), increase the incidence of certain diseases. Sheep wear in the afternoon, I have been 25 weeks, I am afraid of doing it, I am afraid of not doing it, it is really too difficult

Would love your thoughts, please comment.x