Since so many have asked about Sam we have decided to give him a page so that those who wish can keep updated with his progress and see how God has performed miracles in his life, too.
MAY 1, 2011
Sam was born in May 2010 – a perfect baby boy! In November, when he was 5 months old, he was involved in an accident while in his stroller. The stroller, we later found out was recalled due to infants suffocating while in it. This is exactly what happened to Sam. By the grace of God, and Karen Sansovich who performed CPR on Sam, he is alive today. Though he was not responsive the day of the accident, by the next day, he was responding well and was discharged from the PICU. He seemed to be fine but after about 1 week, we noticed he was not making eye contact or smiling. The doctors thought that perhaps he had amnesia of sorts and would need to relearn who we all were. We were encouraged while at Disneyworld because he seemed to bounce back and began to smile again. Once we returned home, however, he began to regress and was no longer smiling or laughing. By the middle of December, he began to make rhythmic jerking type movements. He was taken to a neurologist and had an EEG done. It showed a specific type of brain activity that indicated that he had developed a condition called infantile spasms as a result of being oxygen deprived from his stroller accident. As it was explained to us – this is considered a devastating diagnosis with a low percentage of children able to make a full recovery. Sam was immediately put on a daily dose of ACTH- a strong steriod type drug with very harsh side effects and a very high price tag. (A one week supply costs as much as a car!) ACTH was to given to Sam every day in the form of a shot. At first home health nurses came to give him his shot but after the first week, we had to do it. The nurses still had to come several times a week to weigh Sam, draw blood and check his vital signs. It was necessary to keep Sam in isolation because the drug caused his immune system to be severely compromised, which meant he could very easily catch whatever “bug” was going around and then would have difficulty fighting it off. He no longer was able to run a fever, making it harder to know if he was sick or not. In addition, the ACTH caused sleeplessness and EXTREME irritability. At times it seemed like Sam wanted to crawl “out of his skin”… He only slept for short periods of time which meant so did we. We were all exhausted but God is good and he provided for us just what we needed – family and wonderful friends who cooked meals and ran errands for us for months. Thankfully by the end of March, Sam had his last shot and his EEG showed no more brain activity associated with infantile spasms. Unfortunately it did show that generalized seizure type activity had developed in the front part of his brain. This can happen as a result of having infantile spasms and means that he might now have a generalized form of epilepsy.
As of now, Sam is spasm free and has not had seizures that we are aware of. He no longer needs to be in isolation though we are still cautious not to expose him to anyone with a serious illness. He is sleeping much better and his irritability is gone. He qualifies for speech therapy which he receives once a week. He has been battling a severe ear infection since on the ACTH and now that he is off of the meds, he will soon have tubes put in his ears. We are praying and believing that his next EEG will show normal brain activity and we continue to believe for a complete healing for Sam.
June 2011 – Sam had tubes put in his ears and he is no longer having ear infections. He will be having his hearing tested to make sure that he does not have hearing loss. He also had a brain scan which still confirmed generalized seizures. Since he was having seizures that we could visibly detect, he was put on anti-seizure medicine. We are hopeful that this will only be a temporary condition for him. He now walks everywhere! and is starting to make some babbling sounds.
January 2012 – We wanted to give you a New Year’s update on Sam. He is still on his seizure meds and over time the dosage has needed to be increased to keep him relatively seizure free. He will be having another EEG this month and we are praying for a good report. He is still receiving weekly therapy sessions to help him communicate better and to catch up on developmental things that were delayed due to his accident and the complications that followed. He is responding well and we are hopeful that this year he will catch up to where he needs to be.