Day 12 of ACTH

There really isn't much to write about today.

Marek is still having spasms. His last high dose of the medication will be given this Friday. We are hoping to see a miracle in the next few days.

Marek was evaluated by first steps on Monday. He had a Physical Therapist, Occupational Therapist and Developmental Therapist come to the house. I was very impressed by all of them. Marek qualified for therapy in all areas. He was higher is some areas than in others. His highest score was in social interaction and they put him at a 4 month level. His lowest scores were in his gross motor skills and fine motor skills where they put him at a 1 month level. He will get his first therapy session next Wednesday.

We are seeing the side effects of ACTH in full force now. Marek doesn't sleep for more than an hour and a half at a time (day and night). When he awakes from these naps he gets into screaming and grunting fits where he won't calm down unless we feed him, give him a bath or put him in the car. Yesterday Mom and I drove around for three hours to keep him content. He also took three baths during the day and two at night. My mom gave him a bath around 6 am and he fell asleep in the tub so she just let him sleep for an hour while watching him since he was so peaceful. We just want him to be comfortable. He is eating 6 ounces every 2 hours. He is constantly hungry which we knew would happen on ACTH but he will keep eating until he throws up. Therefore, we have to limit how much he has which just makes him more upset.

We are hoping that all of these side effects and misery we are putting him through start to pay off...I don't know what I would do if these injections were all for nothing.

Fingers crossed and staying hopeful!