Waiting

Seth has remained seizure free since Saturday, June 14th. Josh and I no longer feel the need to watch in anticipation for an unexpected round of seizures to hit his little body. Seth is still doing well with the shots.

We have started to notice a couple of side effects from the ACTH. Since it is a steroid, Seth is hungrier than ever. At one point last week, our little porker downed twelve ounces in one feeding! We have upped his intake of baby food in an effort to quell the sudden desire for extra formula. So far, that seems to be working. Due to his increased appetite, Seth has started to get a bit chubbier. He's always been a thin and active baby, so he looks more like a "normal" baby now. We have been told that the puffiness will decrease once he has been weaned off the ACTH.

Several people have asked when he can be weaned off the medicine. The answer will largely depend on what Seth's follow up EEG shows on Thursday. If his EEG comes back clear, we can begin to wean him. If not, we regroup to discuss how to proceed next.  Josh and I are anxious to hear the EEG results on Friday. We are praying that everything comes back normal.

I should also make it known (for those who have asked), that we have been directed by the neurologist to keep Seth away from large crowds until further notice. The ACTH inhibits his immune system, so even seemingly insignificant illnesses are hazardous to him. Josh and I have gone through three full bottles of soap just within the last week! We do not mind visitors provided everyone visiting is currently feeling well and does not mind a few extra hand washings!

I will update again after our meeting with the neurologist on Friday. Thank you to everyone who has been sending well wishes and prayers. We are so grateful for your support!