Where do I start? The last 2 weeks have been such a roller coaster for us. It all started on Sunday July 19
th. It was a typical morning. We were getting showered and dressed in our room while Jacob watched cartoons. All of a sudden, we heard Jacob fall to the floor without any apparent reason. There wasn't anything around him, he just fell. We chalked it up to normal kid clumsiness and continued on with the morning. I took the kids swimming at my parents house that afternoon and Jacob "fell" two more times there. Again, there was nothing around him to trip him up, he just collapsed to the ground. It was hard to figure out what was going on because I never actual saw the fall, just heard the crash and crying that followed it. That night when Jon got home I told him what had happened and we both agreed we needed to keep an eye on him to see if this kept happening. The following day was our trip to
Gilroy Gardens. He fell twice at the park - once was on the water play ground and another time waiting for the train. It was hard to know what was going on because again, the play ground was slippery and he was kind of playing around on the railing at the train station... so was he falling because he was goofing around or was something else going on? We all started watching him like a hawk from that moment on. We went to Denny's on our way home and he collapsed while we were walking to the table. I was holding his hand and his legs just gave out. He wasn't loosing
conciseness or blacking out, he was just loosing his balance and falling to the ground. The next morning he fell at home at least 3 more times and by 1:15 Jacob and I were at the Pediatrician's office. He did a neurological exam which was normal and said that it might be related to the flu we all had over July 4
th. He wanted us to go home and observe Jacob for the next few days and call with any changes or if things got worse. I told the doctor I felt really uncomfortable leaving with no
explanation as to why my 4-year-old was dropping to the ground 4-5 times a day. He reassured me that observation was the only thing right now, so we headed home. The next day was Wednesday July 22
nd. Jacob had a full-blown seizure at 7:45 am. As usual, the 3 of us were in our bed watching cartoons and waking up for the day. Jacob was in between the two of us and I didn't even know anything was going on. Jon yelled Jacob's name and I immediately jumped up, saw what was happening and dialed 911. The 911 operator walked us through what to do and within minutes the ambulance was here. Jacob's seizure lasted about 45 seconds, but felt like a lifetime to Jon and I. Jacob and I rode to the
hospital via the ambulance while Jon stayed home with the triplets until my mom and dad got here. In the ER, he was examined by the doctor and had an IV put in. The ER doctor had consulted with the children's neurologist and they suspected that all the falls that he had over the last 3 days were small seizures. It took everything in me to not break down and loose it. We were moved from the ER to the
Pediatrics floor after about 4 hours. Jon and I both stayed with Jacob overnight, while mom and dad where taking care of the triplets. We saw the neurologist that night and his initial diagnosis was genetic Epilepsy. That night I took a break to get a bottle of water and it was the first time that day I'd been by myself. I remember thinking - is this really happening? Are we really here right now? Jacob was perfectly fine 4 days ago and now he has Epilepsy. It was all to much. There was too much information to wrap my brain around. Jacob had an EEG Thursday morning and an MRI in the afternoon. The EEG showed definite seizure activity in his brain and the MRI showed 2 spots on his brain. This was not the news we were hoping for. The doctor didn't know why, how or when these spots showed up. They could or could not be related to the seizures. There was no
explanation. All he knew was that it was not a tumor or anything like that. The neurologist requested an
opthamologist look at Jacob's eyes and that he have a spinal tap. Again, way too overwhelming. We spent another night at the hospital and Friday morning he had a few more falling incidents in the kid's play area. At 10am they
dilated Jacob's eyes for the eye exam and at about 10:45 Jacob had another full seizure. Jon's parents, his nurse and Jon and I were all there with him. This one was similar to the first one, lasting about 50 seconds. They gave him some sedative-type medication to relax him for the eye exam. The
opthamologist said Jacob's eyes were perfect and did not show any abnormalities - great news. At 11:00 he had his spinal tap, which he was under anesthesia for. The doctor was hoping to not see any protein in his fluid, which he did not. Again, great news. The neurologist said at this point, everything we could rule out was good news. He was hoping to not find anything. We stayed over one more night and were discharged on Saturday July 25
th. Jacob started seizure medication called
Depakote, which appears to be working. He has been seizure free since July 24
th - praise God! Jon was able to stay home almost that entire week we were home. Of course, we were on edge and watching Jacob closely. But, day by day, he's been doing great. I think it took me a full 7 days after his first seizure to make it the whole day without
shedding a tear. I can't even begin to go into the emotional side of this whole thing. It would take too many words to explain. At this point, we are just extremely thankful that the medication appears to be working and that it's almost been 2 weeks with no seizure activity. He had a blood draw this week which will monitor the medication in his blood stream and we have another follow-up appointment with his neurologist at the end of the month. My son has a neurologist. I never thought I'd have to say that. I know there are so many other worse things that could have happened and still could, so we are trying to stay positive and value every second we have as a family.
I want to thank everyone for their prayers and thoughts for Jacob and our entire family over the past 2 weeks. Your love and support kept us going when we were at the lowest of lows. We are overwhelmed with the wonderful family and friends we have and their willingness to help, pray, bring food, do laundry, etc. We are truly blessed!
Jon and Lisa
His ouchies!
