So we made it through Noah's video EEG. We didn't get into a room last night until 6:30 p.m. He had already had a bad spell early yesterday morning that caused him to vomit twice in the hospital lobby. Yesterday was not a good day. Fortunately we were able to catch some staring spells and one of the more involved spells. The one he had this morning went on for nearly two hours, an hour and a half of that being after he was given an emergency dose of Ativan. Needless to say, the Ativan did not touch it just as the Diastat doesn't.
The neurologist came in to take a look at him and the EEG results so far. He gave us some preliminary results and said he wanted to take a further look at it at the review station. A couple of hours later he was back in the room. He told me that after reviewing all of the various spells, he did not see any apparent seizure activity. Let me repeat this...the neurologist said NOAH IS SEIZURE FREE!!!!! I know, I know...your jaw has probably just hit the floor. Go ahead and close your mouth because what you just read is correct: NOAH IS SEIZURE FREE!!!!! I asked the neurologist "So you are telling me that at this time my son is seizure free?" The neurologist said "Yes." I asked him "Do you know how long we have been waiting to hear these words?!? For more than three years!" The neurologist simply grinned and said "I know. It's great, isn't it?"
So here is the explanation you are probably needing to explain things. The more intense spells are thought to be due to the Lamictal. The Lamictal is the only medication we have increased since this third surgery in an attempt to stop what we thought were horrible seizures. In fact, the dose has been doubled since surgery. This medication is known to interact with many other meds and is the best bet for an explanation for the eye rolling and vomiting since this always occurs right after Noah gets his AM meds. The staring spells and some other eccentric habits Noah has (arm flapping, neck turning side to side, etc.) is either due to Noah's neurological system being suppressed by all of the anticonvulsants or it is a simple part of him that will always exist due to the removal of half of his brain. Either way, none of these spells are seizures!! Noah will be weaned off the Lamictal within three weeks. The other three meds will eventually be weaned in the coming year or two.
I have had many good days in my 26 years of life. There have even been a few perfect days: my wedding day, the day my sons were born...and now I can add one more. July 1, 2009 will always be the best day at least since Noah's birth. July 1, 2009 is the day that God allowed his power to be shown through that of a miracle. It is the day the world was lifted off of two very loving parents' chests. It is the day two big brothers were allowed to hug their little brother without having to watch for a seizure. It is the day prayers from many people, from many religions, from all over the world were answered. July 1, 2009 is the day that I, a mommy with renewed faith and reawakened hope, picked up her baby boy, looked him in his wondrous blue eyes, and saw the face of a seizure free angel.
807 days of seizures or believing some things we were seeing were seizures can play a toll on a person. It has certainly been a rough and bumpy road. And although I would have taken all of the pain and seizures away from Noah if I could have, it is so incredibly remarkable to know that all of the surgeries, medications, hospital stays, doctor appointments, trips to the ER, and yes, even the tears were worth it just to hear that at this very moment, our baby is seizure free. To the many individuals that have cried and prayed, hoped and loved, we thank you. For without you and your strength, our family wouldn't have made it through. And to my HME and hemispherectomy family, your words of encouragement have been an undeniably strong source of inspiration. Thank you, thank you, and thank you!! May all of the glory be given to God, our heavenly Father who has shown through Noah that He exists and miracles do happen. You just have to believe!
From a Mommy on one of the happiest days of my life,
Jen
P.S. I have a couple of prayer requests. A dear friend of ours, Brooke Bowman, has a 2 year old daughter, Maggie, that had open heart surgery today. She is absolutely beautiful so please keep her in your prayers. There is also a 13 year old girl at UNC battling anorexia. Please keep her family in your prayers. Also, my boss, Mary Sonnenberg, celebrated her last day at Sandhills Children's Center today before moving to Delaware where her husband took a job last year. Mary was with the children's center for 20 years. She has helped sculpt and mold the children's center into what it is today. She has been an invaluable source of knowledge and support for thousands of families, including ours. Unfortunately I was unable to give her a proper farewell but Mary, if you are reading this, you will surely be missed. You have forever left a lasting impression on my heart. Good luck with your future endeavors!
