Post Op Appointment

I am going to start by being honest and saying that seeing the seizures after Charlie Claire's surgery had me spiraling down into a deep black hole. I was feeling quite defeated and wondering what we had just done to our sweet baby. Jason on the other hand is much better at remaining positive and while he wasn't feeling good about the seizures he was not on the path I was on.  We both were anxious about C's post op appointment and had a lot of questions. I was nervous that having this appointment right before Christmas wasn't the best idea but at the same time I didn't want to wait until after Christmas to have our questions answered.

Turns out yesterday's appointment was just what I needed. It's very easy for me to get wrapped up in the negative instead of looking at all the positive things we have to be thankful and grateful for. Dr. Tye and Dr. Morton did a great job of putting things into perspective for me yesterday.

First we met with Dr. Tye and his nurse, Joann. As far as healing from surgery Charlie Claire looks AMAZING! It's actually hard to believe she is only 2 weeks post op. If an adult had the surgery that C just had we would probably still be in the hospital. Dr. Tye is just the nicest man ever and when we asked him about the possibility of needing to remove C's sensory/motor area he flat out said that he needs to be able to live with himself and doing that to Charlie based on her current situation is not justifiable. If those areas were to be removed she would most definitely have a permanent disability on the right side of her body and at this point in time the cure for her seizures would be worse than the seizures she is having.

After seeing Dr. Tye and his nurse we headed over to meet with Dr. Morton. Dr. M was honest and said that since C is only 2 weeks post op that it is to soon to tell if the seizures will fizzle out or if they are here to stay. Our main concern is what the seizures are doing to the rest of her brain. Thankfully, the seizures are NOT doing anything to impact the rest of her brain which is why when she is having them she is still totally "with it." She continues to play, eat, respond to you, etc. Dr. M said that he would like us to give this some time - at least a year to see what happens with these episodes. Since they are not having any type of negative affect on C we are comfortable with this. If after some time we are still dealing with seizures there are other options we can try before resecting any more brain tissue. We won't go into all the details but while these options would still require a surgery it would not cause C to have a deficit which would happen if we removed her sensory/motor strip area.

We spent a lot of time with Dr. M and he did answer all of our questions. Overall, the conversation with Dr. M was super encouraging and he is very pleased with how well Charlie is developing and hitting her milestones!

That brings me back to focusing on positive things. I have spent A LOT of time focusing on seizures and things that come along with the seizures. It's time for me to move those thoughts to the back burner and to start celebrating the wonderful things we have. We are blessed that Charlie Claire's first surgery was successful in stopping her infantile spasms! If she were still having those spasms she most certainly would not be where she is today developmentally. We are grateful that Charlie Claire was able to be helped and because of that she is a happy little girl who is thriving, learning, developing, etc. and we have every reason to believe that she will continue down that path.