Connor Strong

Connor was born on 2/15/11 at 8:04 p.m. After 14 hours of labor, my little guy made his way into the world. The moment I laid eyes on him, I was so in love. Connor was born with a large reddish purple birthmark that covered his left half of his face, and into his scalp. My husband and I were told that it was a stork bite and it will go away. Later that night, the first of which seemed like many pediatricians came into our hospital room. He keept going back to Connors left eye, because the birthmark covered his eye lid as well. We were told nothing, so we did not believe we had any need to worry. Finally after three days of being in the hospital, my perfect little family was released to go home. A week later we had meet with Connor's pediatrician for his one week well baby check. Thats when we were informed that he could possibly have a syndrome called sturge weber ( SWS). After he explained to us what it was, he referred us to Children's neurology. His pediatrician told us that Connors actual chances of having SWS was about 1 in 500,00 thousand babies.We were seen with in the week. At that point they ordered Connor to have an MRI study to see if his port wine stain was actually stained on to his brain. The day of his MRI, was a nerve racking. They had to sedate him, so he had an IV. I think I was crying worse then Connor was. It broke my heart to see such a little guy have to go through anything like this. Once the MRI was completed we were informed to go home, and follow up with neurology next month. Well if anyone knows me I cant not just wait for results, so I found my way around the system, and actually had them faxed to me at the doctors office that I was working at. I read the report, and was relieved to see that it said NORMAL MRI of the brain. On the morning of July 15th, 2011, we went on like any other day. I got ready for work, Connor while Connor was still sleeping. Dave watched him until he got him all ready to go to the babysitters. I was sitting at my desk when Dave called me to tell me I needed to get to the hospital. He informed me that Connor had a massive seizure. At this point I thought he was pulling a nasty joke, because I just read the report which said it was normal. That's when Dave said get up here now. At that point, I dropped everything and rushed up to the ER. This is a day I will never forget. My poor baby laying there looking life less, having seizure after seizure, then a stroke. Life flight was called were he was then rushed to Children's hospital. That is were we spent 3 weeks in ICU. Connor continued to have seizures after seizures. After a few days we were informed that connor needed a hemispherectomy, were they would remove half of his brain. This is huge, its not like going for a simple procedure, this was actually taking half of his brain out of his head. We decided that we wanted a second opinion, so my mom set us up to go to Pittsburgh for a second opinion. Connor was admitted to the neuro floor, were we stayed once again for five days for observation, and a three day EEG. The neurosurgeon came into see Connor, and said that he needed the hemispherectomy as well and they were going to do it within the week. We actually found out the the neurologist was leaving, so I was not really comfortable with him having something done, and then not even following with the neuro team who performed the surgery. So we went home, were I spent days doing research. Thats when I found an SWS specialist. I made Connor an appointment. He was seen with in the week. After all the negative hope we were given, This neurologist gave us hope. He informed us that Connor does not need a hemispherectomy right now. He is just an amazing doctor. Connor loved him. I loved him. Finally something good about SWS. Dr. Chagani is by far the best fit for Connor for neurology. To this day, Connor does have his up and downs. He takes several anit seizure medications, and he also takes an aspirin for strokes. He has a vascular surgeon that we see for his port wine stain on his face. He has surgery on that every other month. He has to go to eye doctor for his eyes because of glaucoma because of the birthmark that covers his eye lid. He attends physical therapy, speech therapy, and occupational therapy on a weekly basis. With out all my friends and family, I dont know how we would have ever made it through this. I am so thankful for each and everyone of you, and your support over the last two years. I cant wait to see what the next chapter in Connor life brings. He is so amazing.