We took August to Johns Hopkins yesterday for his follow-up EEG to check his brainwave pattern. I am happy to report that he no longer shows the hypsarrhythmia pattern and is being weened slowly off of his prednisilone! His neurologist said this is the absolute best case scenario and the chances of the spasms reoccuring are slim.
Howie and I are on cloud nine. The last month has been a lot of bad news with some silver lining, but this is purely positive. I went up to the EEG without Howie yesterday and that is the first time that just one of us has gone to JHH for one of his tests. I was sure that they were going to say that we had made little to no progress and he would remain on the steroids. I was explaining to the technician that usually I hope for the best and my husband, Howie prepares for the worst. I know that you're supposed to do both, but we both only do one or the other. This time I decided that it is much less painful to prepare for the worst and lately, it has usually been bad news so my husband seemed to be fairing better. This time I prepared the worst and got the best.
So now we are reducing the predinisolone and hopefully increasing sleep! We'll now be moving on to tackle August's ears. He is scheduled with an ENT tomorrow. He has had fluid on his ears since beginning of December and he was babbling, but has stopped. I was unsure through December whether it had more to do with the spasms or his ears, but now I know that it is not the spasms/hypsarrhythmia, it has to be his ears. I know that children with Down Syndrome often have trouble with their ears, particularly fluid build up so I am hoping for a plan of action to recover August's hearing so that he can really get back on track with everything. It seems like everything halted for him in the beginning of December because of the fluid and the infantile spasms so after his ears are evaluated, we should be able to make some strides with his physical therapy again. Exciting!
The other two boys are being so patient with all of the trips up the road. We have tried to have as few people taking care of them as possible to maintain some stability, but now they are somewhat skiddish whenever we mention taking August to the doctor. I know they are wondering when I'll be back...in two days or two weeks? About an hour into the drive, I'm already missing them, but everything I read tells me that these first few years are tricky with all of the health issues, but it gets better....I'm looking forward to fewer trips to Hopkins and more adventures will ALL of my boys....
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