Justify $40,000 a vile for your persription

 ACTH is the next treatment and we will begin the treatment most likely within the next handful of days. This is an injection that Cully will get at home after his first round and evaluation at the hospital. At a whopping $40,000 per vile I am having nightmares of dropping one. We know little about this treatment but we have learned that Cully will have to follow a special diet while on the meds and we will have to keep Cully far away from germs. This will not be easy as Cully puts EVERYTHING in his mouth. It will mean we will need to regulate where we take him which is very hard right now. We just want to do everything we can with Cully right now and have him absorb everything... Many other children have been on this treatment before us and there are so many out there that can help us learn what to do and not to do, and the team working with Cully will no doubt be certain to give us much more information as things get going.

 Cully continues to increase in his seizures but also increase in his development. That's NOT how this thing is supposed to work according to the journals, doctors and the understanding we have gained of IS. I'm not above understanding that everything can change at any given moment but Cully is doing very well to learn so many new things each day and mum and I make a good team. We are going to do all we can to take advantage of the time we have in teaching him not just words and such but even more importantly to act and react appropriately.

  The patients project is going very well. Deep breaths and relaxing when upset. Dad can not even do this well. Cully's words are being used very well too. Please, thank you, OK, no thank you, hot tub, outside, airplane, puppy ... A few new words too like IPad, cool, belly, hey, and many names. Another thing he is starting to master is the understanding of NO. Only two days into this but speaking to him with a softer voice and talking to him with a "Cully I said no, do not..." seems to be working where as before a no would not even be heard by Cully.  Not 100 % but darn good.

 I am going to put a video clip together soon and post it here showing just what the IS seizures are. They are surprisingly mild to what is in most peoples mind and it is hard to imagine how terrible these little things are. Not much more than a little nod or twitch yet these things take away our babies.