Here's a little update on Ben.
We went back to Iowa City yesterday. Ben had an EEG then we saw Dr. Joshi, his neurologist there. The EEG showed no signs of hypsarrhythmia which is the chaotic brain waves. His last seizure was last Wednesday. We are so thrilled that the seizures have stopped and the EEG has normalized. We have started to taper Ben off the Prednisolone (the steroid). He was up to 20ml per day and we are going to decrease the dose by 3ml every 5 days so it is going to take quite awhile to get him off of the medication. We can't wait to be done with it because he HATES it. I can't really blame him because it tastes awful! It is so bitter even though we had it flavored. It is so hard to get him to take such a huge amount of liquid - we have to use three syringes (he also gets 1ml of Ranitidine to counteract the increased acid from the steroid).
We still aren't quite out of the woods yet though. There is a chance that the seizures could return as we start to taper the steroid. If he has even one seizure we have to go on the ACTH injections. Dr. Joshi said we have about a 50/50 chance that his seizures will come back because he has "symptomatic spasms" which just means we know the cause of his Infantile Spasms - his stroke. We are praying that the won't come back but only time will tell.
Right now we are just counting our blessings and being so, so thankful for all your thoughts and prayers. Our prayers have been answered for the seizures to stop. Ben has had an amazing couple of days. He is so happy. He started feeding himself yesterday. He started rolling over today. It is exciting for every parent when their baby feeds himself for the first time but when Ben put Cheerios in his mouth yesterday before we left for Iowa City I cried. Every milestone is one worry to check off my list of things I wonder if he'll ever be able to do.
I'll try to get a video of him rolling over soon!
Thank you all again for all the kind words and prayers. We can't tell you how much they mean! Thank you! Thank you! Thank you!