Well, I think that the unimaginable is happening! I think that my youngest son, Dillon, may have the same problem as my middle two boys. I can't believe that it is about to happen again! My husband thinks that Dillon has the same problem. I don't want to believe it.
Dillon has started coughing, that is how it started with the other two boys. The doctor's can't tell us why he's coughing and so the uphill battle to find out why begins. The genetics doctor's want to do an MRI to see if Dillon has the same brain changes that the other two boys have, but the pediatrician wants to wait. Of course, even if he does have the same changes- what does that mean!
I dread the next few months- I guess I can always hope that Dillon just has a really bad cold that is lasting for 7 or 8 weeks. Well, I guess time will tell.
Thursday, May 29, 2008
Wednesday, May 7, 2008
My Special Boys- Part 2- Danny
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?
Friday, May 2, 2008
My Special Boys-part 1-Connor
I have four children, they are all boys, ranging in age from four months to ten years. My two middle children, Connor,4, and Danny,2, have some special needs. I would tell you what their diagnosis is, but the doctors haven't been able to give them one. Connor and Danny have an unknown genetic disorder(at least that is what the doctors say right now). Right now, we are hoping that our youngest son doesn't have the same thing but only time will tell.
Connor was born prematurely at 35 weeks and spent the first month of his life in the NICU. When he came home, we thought the hardest part was over. Instead, we spent the next year trying to figure out why he was constantly coughing and breathing loudly. We thought it was because he had been on a ventilator for a week in the NICU. He had several episodes of pneumonia, which was diagnosed only by doing a chest x-ray because he never acted sick or ran a fever. Eventually, one of his doctors ordered an upper GI and the results were very surprising. The upper GI showed my son aspirating. One of the doctors told us he was very lucky because he had been silently aspirating, probably his whole life. He was put in the hospital immediately and was taken off oral feedings. He was a year old. He spent the next three months in the hospital while the doctors ran tests. Most tests came back ok, but his MRI showed that he had a slight Dandy Walker formation and extra fluid around his brain. They put a g-tube in when he was 14 months old.
Since then, Connor has had unexplained fevers, sensory integration problems, speech delays and developmental delays. Last week the genetics doctor took more blood to run some new genetic tests. I hope it will give us an answer.
I think that the most frustrating part of this whole thing is that our 2 year old has the same issue and I think the genetic doctor suspects that my four month old may have the same problem.
When I look at Connor it is hard to believe everything that he has been through because he is such a smart and lovable little boy. Connor is a very special little boy because no matter what is going on with him he is always happy.
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