Alexander has made it to his first milestone and he’s looking really good, all things considered. He’s been completely weaned off of the phenobarbital for quite a while now which leaves just one of the four seizure medications (Topamax) for maintenance. Of course, the one medication he’d stay on happens to be the one with the highest insurance co-pay but he’s so darned cute that he’s worth it. He’s also decided to be like his big brother in terms of reflux so he’s been getting the Zantac and Prilosec to help with that. We’re still thickening his milk with this clear substance called Simply Thick which helps him take the milk without as much gagging (he’s certainly a little piglet who can suck down a big bottle and give some of the best belches you’ll ever hear…he can rock the walls when he sets his mind to it!).
We’re expecting him to require some sort of physical therapy as he does have a bit of stiffness on the left side. The arm seems to be more affected than the leg but when you consider that his dysplasia was awfully close to the motor strip, the fact that he’s moving the left side at all is something to be thankful for. We expect that the physical therapy should help him gain strength on the left side but as to the ultimate effects, we just don’t know yet.
But we remember what it was like just a few months ago when our little one was suffering 15-50 seizures a day and when he wasn’t seizing, he was pretty much a zombie due to all of the medications being dumped into him.
If you had seen him then, you’d hardly recognize him now! He’s bright-eyed and bushy-tailed and it’s hard to believe that three months ago, you were lucky if you ever saw his pretty blue eyes. Now he doesn’t have a problem turning those pretty blue peepers on you full blast with a healthy helping of cuteness on the side. He certainly engages well with whoever is holding him and he is one amazing little chatterbox! He is always talking and cooing even at night. You learn after a while to tune out his nocturnal conversations…if you didn’t, you’d never get any sleep at all.
The boy is doing amazingly well for someone who just had major brain surgery three months ago. The road to recovery is going to be a long one (when you consider the physical therapy) but Dr Bruce has already given us a miracle by working his magic to allow Alexander to walk that path without the seizures (so far!). And hopefully, he will remain seizure-free as he continues to progress.