Sunday, October 25, 2009
I would like to say that I had a very different and harsh pregnancy. I was 5 months pregnant when the doctors told me that I was high risk because I had to much amniotic fluid, and the baby had an enlarged liver and he had a cyst near his bladder. I had a lot of ultrasounds. The next two weeks I had to go back and get another ultrasound. The doctor told me that the cyst is gone and the liver is back to normal size. But i still had a lot of amniotic fluid. They did a lot of tests on me to find out why. They couldn't find the reason. All the test that they did on me came out negative. No infections no nothing.As time went by, it was time for me to deliver. The mid wives had me pushing in about 4 different positions. I was standing up holding a bar pushing. I told the doctor that he was finally coming out. So she was trying to pull him out but it was a little to hard. so i gave her one last push and she finally got him out. Everything was ok for the last 4 months of his life. Until he was 5 months old. One day, i woke up early in the morning and was giving him a bottle. He stopped drinking and his arms elevated and was stiff and he was staring into space. That wasn't a good site to see. I was scared. I took him to the hospital and I had to stay there so they can see what he did. They, the doctors thought it was reflux. it only happened while he drank and when he woke up from a nap. But they didn't know so they sent me to a different hospital that has nuerologist and doctors that have the machines that could know what is is going on.Ok, now we are in a different hospital that is 45 minutes from where i live at. I had to tell residents and the nuerologists o what had happened. So they took mri's cat scans, blood tests, fluid from his spine, etc. Everything that they did came out negative. But the last thing that they did was an eeg. It said that he had abnormal brain activities. He was diagnosed with infantile spasms. He has been on medication for the infantile spasms since he was 5 months old. from that he ended up back in the hospital for an overnite. Then they saud that he has generalized seizures. So they gave him another type of medication. the medications that he is on still hasn't worked. it just makes him sleep. He can't walk, he can't talk, he can't hold anything, he can't grab, he can't roll over or walk. He has been in therapy on and off. They has been no change. I have helped him too nothing. I can't work because of this. I go crazy because i do my research and i can't help him. He was supposed to start a ketogenic diet. When i go see his doctor about it he tells me no we aren't going to do that. It's really for seizures. The only thing that i can do is change his diet to a healthier diet. I gave him healthy foods but he is still the same. I have to help him going to the bathrrom too. He has to take miralax to help him. I have been out of work since I was 5 months pregnant. I am looking for ways to make some money. I feel useless. I would like to speak to someone that has the same problems. maybe i would be able to feel better. thank you.