The first situation is that Carson's body temperature dropped, there were two days where he went down to 93-94 degrees. (Normal is 98.9. 93 borders on Hypothermia). We were very scared. Jeff came home from work to hold him, we had his stocking hat on, and several blankets from the dryer to warm him up. He has since been holding steady around 97. From what the doctors can tell us, the reason for this temperature drop is that his disease is progressing....
The second situation has been with in the past few days. He has been having a lot of seizures, they have been clusters of 'little' seizures and the clusters have been back to back. We don't think he got any sleep on Sunday night, so on Monday night we gave him Roxicet (pain med) to help him sleep and try to break the cycle of his seizures. Tuesday morning he was a little better but by the afternoon he was bad again and we had to give him two doses of Diastat (Valium). We were expecting for that to knock him out...nope....he did not go to sleep until 10:00 pm when we all got in bed. (Yes you can say it, he is SPOILED! But well deserved.) Today, Wednesday, Carson has still been having a lot of seizures, but have not been all back to back. We are not sure if we will need another Diastat tonight, will have to see how it goes....
The third situation is not about Carson. There is another family going through what we did 2 years ago. There 4 month old son was diagnosed with Menkes two weeks ago, they live less than 5 miles away. Jeff and I have been in contact with them, actually they came over to our house a week and a half ago. We are glad that we are available to help support them and help with questions they have. We will be seeing them in the future again and hope to become friends....
That is about all I have right now...I am sure I am forgetting something.
