Natalia is my second born. I had a normal pregnancy and she was a scheduled c-sectionbecause my first born was an emergency c-section. She was born November 12, 2010 at 7 lbs 14ozs and 19 1/2 inches long. At first I saw she crossed her eyes a lot, but this is normal. I have seen it before and it goes away. So with time I saw it didn’t go away. By the time she was 6 months old, I changed pediatricians because I would keep asking her first pediatrician why her eyes wouldn’t stop crossing and why was she so limp. She wouldn’t sit on her own or try to do any milestones that she needed to be by 6 months. Only then is when he showed concern andquestioned why her head was so small and why do her eyes keep crossing. I just looked at him and said this is my last visit with you just because she needs her 6 months shots, but tomorrow I will be taking her to a new pediatrician and hopefully get answers because you haven’t helped me at ALL.
When the new pediatrician saw her his first response to all my questions was “I don’t want to scare you but your daughter may be mentally retarded”. I said “scare me by telling me that my daughter has a day or only hours to live. If she’s mentally retarded, tell me what I need to do to get her the help she needs. That doesn’t scare me at all”. So he sent her to a neurologist, nutritionist, and ophthalmologist to get the ball rolling. Neurologist ordered an MRI. So while we are waiting for the results, nutritionist said to add more calories to her food like adding more oil when I would make her food because she was below her growth standards according to their scales. The eye specialist ordered 2 surgeries to fix her severe strabismus.
By then she was 10 months old when she had her first seizure. I grabbed her and took her to the ER. They took her from me because she was lifeless and I couldn’t speak a word. When I finally could speak I started telling them that I don’t know what’s wrong with her, but that she has no soft spot and it closed at like 2 months old and that she was being seen by a neurologist and we were waiting on an MRI. So they did a cat scan and when they came out they told me we have bad news. I was ok tell me what’s wrong. That’s when they told me my baby was missing 25-35 percent of her brain that it didn’t finish developing. All I said was how and why did this happen. They started her on phenobarbital and I took the cd to her neurologist. He was satisfied and said she had microcephaly and that she was going to be having seizures and so on.
With time the son of her pediatrician took an interest in her because he was going to take over his Dad’s patients. He ordered a genetic test, which should been done early on, but never got done. On November 25, 2013, I finally had a diagnosis it was either a genetic disorder or a brain shrinking disease that would shrink her brain till she dies. Thank God it was a genetic disorder which is Foxg1. By now I understand those uncontrollable crying spells, the laughing spells, constipation, the asthma, and so on. Everything makes since now.
I have avoided the g-tube because thank God she eats very well orally and since the diagnosis the GI specialist left the g-tube idea alone because he understands now that she will not gain weight like a normal person. She’s only 3 pounds under so for now no g-tube. The neurologist still sees her and we are almost done taking her off phenobarbital. 22 more days and that’s it. She wears glasses because she was recently diagnosed with astigmatism. She still sees a genetic specialist because they tell me this could just be the beginning of the worse the crying, laughing, seizing, not walking, or talking, or standing on her own could get worse or better. I say I love my child and God knows why she is with me. I have a 3rd child and she is fine, nothing wrong with her and healthy just like my oldest. Natalia or Nana, how we call her, is my special angel who is sent to me to speak for her and care for her like no else will do. I am the chosen one to be so lucky to be her mother. Because that’s what I think I all is lucky to have such a precious angel to call my daughter.
Natalia is my second born. I had a normal pregnancy and she was a scheduled c-sectionbecause my first born was an emergency c-section. She was born November 12, 2010 at 7 lbs 14ozs and 19 1/2 inches long. At first I saw she crossed her eyes a lot, but this is normal. I have seen it before and it goes away. So with time I saw it didn’t go away. By the time she was 6 months old, I changed pediatricians because I would keep asking her first pediatrician why her eyes wouldn’t stop crossing and why was she so limp. She wouldn’t sit on her own or try to do any milestones that she needed to be by 6 months. Only then is when he showed concern andquestioned why her head was so small and why do her eyes keep crossing. I just looked at him and said this is my last visit with you just because she needs her 6 months shots, but tomorrow I will be taking her to a new pediatrician and hopefully get answers because you haven’t helped me at ALL.
When the new pediatrician saw her his first response to all my questions was “I don’t want to scare you but your daughter may be mentally retarded”. I said “scare me by telling me that my daughter has a day or only hours to live. If she’s mentally retarded, tell me what I need to do to get her the help she needs. That doesn’t scare me at all”. So he sent her to a neurologist, nutritionist, and ophthalmologist to get the ball rolling. Neurologist ordered an MRI. So while we are waiting for the results, nutritionist said to add more calories to her food like adding more oil when I would make her food because she was below her growth standards according to their scales. The eye specialist ordered 2 surgeries to fix her severe strabismus.
By then she was 10 months old when she had her first seizure. I grabbed her and took her to the ER. They took her from me because she was lifeless and I couldn’t speak a word. When I finally could speak I started telling them that I don’t know what’s wrong with her, but that she has no soft spot and it closed at like 2 months old and that she was being seen by a neurologist and we were waiting on an MRI. So they did a cat scan and when they came out they told me we have bad news. I was ok tell me what’s wrong. That’s when they told me my baby was missing 25-35 percent of her brain that it didn’t finish developing. All I said was how and why did this happen. They started her on phenobarbital and I took the cd to her neurologist. He was satisfied and said she had microcephaly and that she was going to be having seizures and so on.
With time the son of her pediatrician took an interest in her because he was going to take over his Dad’s patients. He ordered a genetic test, which should been done early on, but never got done. On November 25, 2013, I finally had a diagnosis it was either a genetic disorder or a brain shrinking disease that would shrink her brain till she dies. Thank God it was a genetic disorder which is Foxg1. By now I understand those uncontrollable crying spells, the laughing spells, constipation, the asthma, and so on. Everything makes since now.
I have avoided the g-tube because thank God she eats very well orally and since the diagnosis the GI specialist left the g-tube idea alone because he understands now that she will not gain weight like a normal person. She’s only 3 pounds under so for now no g-tube. The neurologist still sees her and we are almost done taking her off phenobarbital. 22 more days and that’s it. She wears glasses because she was recently diagnosed with astigmatism. She still sees a genetic specialist because they tell me this could just be the beginning of the worse the crying, laughing, seizing, not walking, or talking, or standing on her own could get worse or better. I say I love my child and God knows why she is with me. I have a 3rd child and she is fine, nothing wrong with her and healthy just like my oldest. Natalia or Nana, how we call her, is my special angel who is sent to me to speak for her and care for her like no else will do. I am the chosen one to be so lucky to be her mother. Because that’s what I think I all is lucky to have such a precious angel to call my daughter.