Sparkle

Today we had our follow-up appointments with Dr. Sood and Dr. Chugani. Both were thrilled with how well Dominic is doing. Dr. Sood said his incision looks great and so does the shunt. Supposedly the incision will look it's worst in about a month because of how the skin stretches as his head grows. But around 6-9 months post-surgery it should just be a thin line and the hair will start to grow back in that area. Dr. Sood revealed to me that in 18 years he had never had a patient come out of surgery with a sore on his neck like Dominic. He assumed it was from how he was clamped, but said he kept thinking about it and a few weeks after surgery and he realized that during the operation they put an electrode on his neck that is hooked up to the EEG monitor and that must be what it was from. DING, DING, DING! We have a winner, people! I don't know how many times I had to tell nurses, doctors, anaesthesiologist etc. that Dominic is allergic to the paste they use to stick the electrodes to his head. After our 48-hour EEG when the cap came off and revealed blisters covering his head, I knew I had to make sure that never happened again. I make sure to tell anyone who asks if he's allergic to anything that he is indeed allergic to that particular paste. I guess in pre-op they didn't pay much attention because he was having surgery not an EEG. So, in the end it was a huge burn turned blister, not a bruise, which is STILL not healed...

Other than that grand discovery, everything seemed great from Dr. Sood's perspective. We won't need to go back and see him for another year unless something happens that's cause for concern. Later in the day we met with Dr. Chugani and he thought Dominic looked great. Dominic wouldn't stop babbling and "talking" to him. When I asked him about how he thinks Dominic will do developmentally and he seemed very positive. He said to look at surgery day as his "birth" day. Everything before that doesn't really count because he has been so drugged and constantly seizing for the past 9 months. So everything he does now is through a new set of eyes and is all new to him; almost like starting over. So the fact that he is sitting, babbling, self-feeding and interactive is incredibly good news! He should continue to progress quickly and hopefully become mobile in the next few months. Because Dominic does have some use of his right hand (although still very weak) he thinks he will be a great candidate for Constraint-Induced Movement Therapy. In this particular therapy, they would restrain his strong arm and hand by casting it in hopes of getting him to only use his weak side. Here is a pic of a cutie I found who has been through this type of therapy. You'll notice her left arm is casted and has pink kinesio tape on her right. She also has an AFO on her right leg, which is what Dominic will be fitted for in the near future.

Tonight was started weaning the Vimpat. It will take about four weeks to fully wean him off that. During this time, Dr. Chugani would like him to get an EEG just to make sure there are no spikes. If the EEG comes back clean we'll start weaning him off the Clonazepam. I cannot wait to see what this child will be like on only ONE seizure med! The plan is to then do 24-hour EEG a year post-op and if everything looks good, to take him off Keppra. That would make him med free! I don't want to get too far ahead of myself, but it sounds like a good game plan to me :o)

After Dr. Chugani was examining Dominic, he looked up at me said "what I look for in a patient is a sparkle in their eyes. It's not just what he's doing or not doing physically or where he's at developmentally after surgery. But if he has that sparkle in his eyes, I know he's going to do great". Dominic really has "woken up" and has a beautiful sparkle in his eyes.

Tomorrow we resume our normal crazy routine - Mitchell is off to preschool; which he loves! Dominic has PT and OT and then his OT from Early On will be out Wednesday to get him registered for the year. PT again Thursday and then hopefully a relaxing Friday.

Mitchell on his first day of preschool!