Danny is my 2 year old son. He has the same genetic issue that Connor has. Danny had his g-tube put in when he was a year old. His feeding issues started when he was about 4-5 months old. He started choking on his food and became a very messy eater. He eventually developed a cough that sounded like the cough that Connor had. He had an MRI when he was 4 months old and his MRI was identical to Connor's first MRI.
Danny had some developmental delays as well, he did not walk until he was about 18-19 months old and he did not sit unsupported until he was 13 months old. Danny also had significant speech and language delays. As a baby he never babbled. There were several times that we thought he might be deaf but his hearing always came back ok. Danny has just begun to talk. He has less then ten words but at least he is trying to communicate now.
Danny also has crying fits for no reason. Ever since he was a baby, he will cry for no explainable reason. There is nothing that anyone can do to calm him down. Eventually he stops, but sometimes that can be an hour or so later. He still has the crying episodes. It can be very frustrating because many times he will start and I have no idea about what set him off.
Danny has also been very clingy and shy. He does not like to play with other children, except his brothers and his cousin. He is scared of people, I think. He is not nearly as social as Connor is. Danny is very sensitive. Sometimes if you look at him the wrong way, he will start crying.
Around 20 months, Danny had an autism screening. The doctors did not think he was autistic but they did say he may be PDD-NOS. Of course they said that about Connor when he was Danny's age, also. I think that just means that they don't know why he acts the way he does.
Even though Danny can be a very shy little boy, there are times, especially when he is with Connor, that he seems like the most bubbly, outgoing boy in the world. Even though Connor and Danny have the same "unknown genetic disorder", I think that there are many differences, especially in their temperaments and social behaviors.
One of the things that I get told all the time is that I am lucky because my children "look normal" and that they don't look like there is anything wrong with them and they look so "healthy and normal". I am glad that they look the way they do and I am sure that the people who tell me those things have only good intentions in mind, but it really upsets me. It upsets me because I think that every child- no matter how they look- should be told that they look normal. After all, what is normal?
Danny had some developmental delays as well, he did not walk until he was about 18-19 months old and he did not sit unsupported until he was 13 months old. Danny also had significant speech and language delays. As a baby he never babbled. There were several times that we thought he might be deaf but his hearing always came back ok. Danny has just begun to talk. He has less then ten words but at least he is trying to communicate now.
Danny also has crying fits for no reason. Ever since he was a baby, he will cry for no explainable reason. There is nothing that anyone can do to calm him down. Eventually he stops, but sometimes that can be an hour or so later. He still has the crying episodes. It can be very frustrating because many times he will start and I have no idea about what set him off.
Danny has also been very clingy and shy. He does not like to play with other children, except his brothers and his cousin. He is scared of people, I think. He is not nearly as social as Connor is. Danny is very sensitive. Sometimes if you look at him the wrong way, he will start crying.
Around 20 months, Danny had an autism screening. The doctors did not think he was autistic but they did say he may be PDD-NOS. Of course they said that about Connor when he was Danny's age, also. I think that just means that they don't know why he acts the way he does.
Even though Danny can be a very shy little boy, there are times, especially when he is with Connor, that he seems like the most bubbly, outgoing boy in the world. Even though Connor and Danny have the same "unknown genetic disorder", I think that there are many differences, especially in their temperaments and social behaviors.
One of the things that I get told all the time is that I am lucky because my children "look normal" and that they don't look like there is anything wrong with them and they look so "healthy and normal". I am glad that they look the way they do and I am sure that the people who tell me those things have only good intentions in mind, but it really upsets me. It upsets me because I think that every child- no matter how they look- should be told that they look normal. After all, what is normal?
