We have had some positive adventures over the last few days. We drove down to the Ft. Lauderdale area, which is about a 10 hour drive without stopping for baby breaks. Matthew takes four medications, but they are not all at the same time....we take meds 5 different times a day (7AM, 10AM, 2PM,7PM & 10PM and every other day for injection). Some of his meds are three times a day, some twice a day. One he takes right before bed. I used to have to write them on a calendar to know what meds to give when.

Matthew did pretty good in the car. We drove down in two days, we used to be able to do it in one day, but with Matthew he gets fussy. Toward the end of the first day of traveling, he was trying to wiggle and he was restrained, he got upset. Once we stopped for the night, he was a happy boy.

He had a good Thanksgiving. We saw family that had not met him yet. He got lots of cuddles and smiles. He was in a good mood most of the time, but he also had his 1st cold. He has a wet cough.

I had a family member tell me about an experience she had with a medication Matthew is taking, Topamax. Topamax is also prescribed for headaches/migraines. My family members said she was taking 100 mg per day. At Matthew's highest, he was taking 150 mg day (he is now on 90 mg day). Keep in mind, this a a full grown adult reporting this story---she said one night she woke up from a dead sleep and thought she was having a heart attack or stroke. She was sick to her stomach, her heart was pounding, she was short of breath. She tried to wake her husband and she heard her words in slow motion. She realized she was hallucinating. After she went back to her doctor, they figured out it was due to the Topomax. It makes me wonder if Matthew had any symptoms like this. He has been on this medication since he was 4 months old...he started off at a low dose, but it was increased to 75 mg twice a day.

Matthew used to get so uncontrollably fussy and vomit every few days when he was at his highest dose. When we went to Children's Hospital in Chicago, one of the first things they did was LOWER his Topamax. He also seems more alert now that he's on this dose of the meds.

We have 12 days left on the ACTH (injection). Once we finish that, we will start to get him off the Topamax.

Matthew is sleeping better during the night, he is starting to look at us more. He constantly is kicking his legs....so much that his developmental teacher warned me he might get sore ab muscles. He doesn't complain about it, though. He "talks" to us a little more now. He has been cooing for about a month now, but he says, "Ah" when we talk to him...almost like a little conversation.