A trip to NYC....

So last Thursday Caillian and I drove into the city for the first time for his Ophthalmologist appointment while Regina stayed home with daddy. Caillain has to have a special eye test done called a electroretinography (ERG) to check for vision loss, more importantly peripheral loss due to the new medication that he is now taking called vigabatrin. Well everything checked out and the test went well even though he wasn't very cooperative. We will go back every 3 months to have the test repeated while he is on the vigabatrin.

My Little Trooper...

Last week we met with the neurologist and she increased the Vigabatrin which seems to be working except for a few little twitches. However since she increased the medication he has been seizure free. We will have to wait another two weeks and if he continues to be seizure free, she will have him go back into the hospital to undergo another 24hr video EEG to confirm that he is in fact seizure free. We are also in the process of tapering him off of the Phenobarbital and the Predisone. I am not sure how much longer he will be on the Phenobarbital but he has four weeks left on the steroid. We also had our weekly appointment with the Pediatrician to have his blood pressure checked and it was normal. Thank goodness, so hopefully now that we are almost done with the steroids, he will continue to have normal blood pressure checks.

Can I just tell you how much happier he has been since he has been seizure free and since we started cutting him back from the steroids. He actually now enjoys his therapies and is self-soothing. He also started going to bed on his own and no longer needs to be nursed at night in order for him to go to sleep. He is actually starting to wean himself. I am so proud of him. He is my little trooper. He is becoming much more active even though the new medication seems to make him sleepy at times.

I wil post some pictures of him soon.