Good Is Good

A little crabby these days

Today was a good day. Today was a very good day. We had an appointment with Dominic's neurologist to review his progress and his EEG from yesterday. Dominic has been spasm-free now for 10 DAYS. In the long scheme of things, it is still very early to get excited, but for us, it's been 10 days without any of the devastating spasms we have seen since Thanksgiving. Dr. Arndt was very pleased with his progress and thought he looked very alert and seemed to be doing very well. He assured us that Dominic is carrying a lot of "water weight" (yeah, I use that excuse too) and that it will come off when he stops the ACTH. He also said that his EEG looked much better. He said that his brain activity is continuing to normalize and his EEG was almost "normal". Not normal for a baby with IS, but NORMAL, like for a normal 3 month old! This is incredible news and Mike and I are over the moon that the ACTH is working and Dominic may have a chance of leading a "normal" life. Tomorrow we reduce his dose again and the plan is for his last day on ACTH to be next Friday (1/28). From there, they will slowly begin to reduce his dosage of Vigabatrin and hopefully wean him off that too. The goal is to have him on Topomax for at least a year with no seizures. After a year, if all goes well, they may consider taking and keeping him off all meds.

He knows what's coming...

We also met with his Infectious Diseases doctor because he is still showing some CMV in his blood and urine. He will continue with the anti-viral therapy for another 3 weeks. They are concerned that he did not pass his hearing screening in the hospital and we rescheduled his diagnostic BAER test out a few weeks. His neuro didn't feel any baby on ACTH (as well as his other 7 meds) could handle being sedated for that test. But this test will give them a much better idea if Dominic does in fact have hearing loss and what to do about it. He started talking about hearing aids and cochlear implants - what??? But he then said that he could just have had wax in his ear. REALLY? I hate when people freak you out for no reason...

Mike giving him Dominic his evening injection

Sleeping if off

With all of this happiness and good news, I can't help but drag with me the perpetual dark cloud over my shoulder. I read the blog of another mom in my IS support group and read the story of her son who was seizure-free for 8 months after ACTH. They then came back with a vengeance and even after another round of ACTH, the spasms wouldn't stop. Eventually he had brain surgery in Detroit (where we are supposed to have a consult) and had half his brain removed. 

I'm filled with mixed emotions today, but Mike reminded me that today was the best news we've heard in almost two months and to take today as a good day and leave it at that. I am trying to do that, to live in the moment and enjoy it. But I can't help but worry about the future - 5 days from now and 5 years from now. I've come to terms with the fact that this will be something Dominic may struggle with for the rest of his life, but it's the roller coaster of emotions that takes it's toll on me. I'm afraid to be happy, afraid to feel relief. Because I'm afraid that if I allow myself to feel that, it will be yanked out from under me. But, today was a good day and there is always tomorrow to worry about tomorrow.