Things are going pretty well this week, no trips to the ER and no hospital stays. We did see the Urologist on Monday and he feels that there is nothing to do right now. He's not in pain and since we stopped the Topamax, he is hoping they will dissolve on their own. We will go back in 3 months for a follow-up ultrasound to make sure they are not getting bigger. If they are, they will need to remove them. The way he described it, that does not sound like fun. Hopefully we can avoid that procedure. Both Dominic's Neurologist and the Urologist thinks it's best if he still sees a Nephrologist, so we're in the process of making that appointment.
I spoke with his Neurologist for awhile last night and he wants Dominic to have an MRI as soon as possible, which is this Friday. He thinks the hematoma in his brain was probably caused by the ACTH. I guess when you're on steroids, your brain swells and then shrinks. So, he thinks that some of the blood vessels in his brain that attach the brain to the skull tore a little when his brain shrunk...yeah, sounds a little scary to me too, but he said not to worry. Yeah, okay. But I guess it can happen and it's the only logical explanation since he did not have an injury and his blood work that tested for bleeding and clotting disorders came back normal. The MRI will reveal where exactly the hematoma is and how bad it is. He is hoping that if it was from the ACTH that come Friday, it will be much smaller or gone altogether. So, that's what we're hoping for.
We were supposed to have his diagnostic BAER test today, but due to a confusing and unnecessary scheduling mix-up, we now have it scheduled for March 17th. We still have our appointment with Dr. Chugani in Detroit scheduled for March 8th, although Dr. Arndt is leaning towards cancelling it since his seizures seem to be under control. But, we'll wait to see what the MRI shows.
Dominic's arm situation has gotten much better, so they are pretty sure it was just Todd's paralysis, which is temporary paralysis following a long seizure. It just seemed to take a bit longer to clear up than normal. He has actually been doing very well. Despite everything he's been through, he is such a happy little guy. Every time you look at him and smile, his face lights up and he has the biggest grin from ear to ear. Well, cheek to cheek I should say. His cheeks are so big they get in the way. He is getting much more active and is constantly kicking and grabbing at things, cooing and gurgling. His favorite thing to do is mimic me when I stick my tongue out, he thinks that's absolutely hysterical. He's also sleeping much better. Yes, he is still sleeping in his car seat, but he is now in his own room and after a few nights of crying it out, he goes for 4-6 hour stretches. This is amazing for me. For awhile he was up every 2 hours or so. It's amazing what 5 straight hours of sleep can do!
We are hoping to take a family vacation in the next few months to my parent's place in Florida, although I'm not sure his doctors will be okay with it. It just seems like a week away as a family is something we could really use right now and the warmth and sunshine wouldn't hurt either. Hopefully over the next few weeks we don't see any more seizures or have any more unexpected trips to the hospital and the docs give the green light. I know this disorder is something we will have to deal with for a long time, but I would be really sad if it prevents us from going places and doing things as a family. So we'll keep our fingers crossed!
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