As I wrote before, the blog is therapeutic for me. The distance in time and the significant progress that Jacob has made allows for me to share our story. I wrote the following "journal" last November when we were planning the benefit for Jacob's Constraint Therapy Program...
On Tuesday evening, my husband Matt was giving our son Matthew a bath while Jacob was sitting on the rug, leaning against my legs. Suddenly he fell forward and I reached down to steady him. He fell forward again so I placed him on my lap where he continued to fall forward. Matthew came out of the bathtub and we all sat in the living room where Jacob continued the same motion. I looked at Matt and said “Well that’s strange. He keeps doing this”. I moved him in all different positions and he continued the same motion. He probably did it five or six times before he was ready for bed. I thought that maybe he was trying to maintain his balance because he was about 7 months old. I grabbed my What to Expect book and looked up spasms and convulsions and ticks in the index but found little information so I decided to sleep on it as well.
I dropped him off to my father Wednesday morning and went to work thinking nothing of it because it hadn’t happened again. After I picked him up that afternoon, my father went through their activities for the day, said he had been very good, and then added that he did something strange. I froze and then described what he had none the night before. My father said that he did the same thing. Jacob was sitting on the couch with him and suddenly started leaning forward a number of times over a twenty-minute period. I didn’t know what to do. My stepmother thought that I should call his pediatrician. So I called and described Jacob’s movements to the pediatric nurse who put me on hold to speak with the doctor. The doctor then got on the phone and asked us to come in so she could observe Jacob. In the doctor’s office, Jacob began the same movements although less pronounced. His pediatrician left the room to call a pediatric neurologist. She said that she didn’t want to alarm me, that she had been wrong before, but that he may be having seizures. She said that she wanted us to stay there until she could confirm an appointment with the neurologist for the next morning, otherwise we would have to go to the Emergency Room. We got the appointment and my father agreed to take us Thursday morning. I called my husband and told him what was going on. I figured that if he’s having seizures, there’s medicine for that, but it’s probably nothing. No big deal. He’ll be fine. But he started having seizures again after we got home that afternoon. I called my uncle who is a doctor and he told me that if the seizures seemed to increase in duration or frequency, we should go to the Emergency Room anyway. We kept Jacob in our bed that night keeping close watch over him.
Jacob and I went to my father’s house on Thursday morning and he drove us to see the pediatric neurologist. Jacob was hooked up to an EEG machine and shortly after, he began having seizures again, this time much more pronounced and frequent. He was taken off of the EEG and moved to the examination room where the doctor did a number of diagnostic tests. We told the doctor that we did notice a few months earlier that Jacob was really only using his left hand. Finally, the doctor told us that Jacob had a very bad diagnosis, that he had Infantile Spasms. I remember that Jacob was fussing so I was bouncing him in my arms but after we were told the diagnosis and the doctor said that he would need to be admitted to Hasbro Children’s Hospital, I held him close to me and buried my head in his hair. My father and I were sobbing. I called my husband and told him the news. The doctor said that there was no “treatment” for Infantile Spasms, that it would either be cured or not and that we would start with the drug ACTH. I asked what would happen if we had done nothing and he said that Jacob would not know us anymore. We waited at the doctor’s office until we had clearance from Hasbro to bring him there and then hit the road. Jacob was admitted and I called my mother to let her know what was happening. She picked up my stepmother and everyone met at the hospital. Jacob continued to have seizures, which were described as “jackknife” seizures because of the motion of his body. He received his first dose of ACTH at 8:30 pm. Over the next few days, Jacob’s blood pressure would need to be monitored and we would need to test his urine with a dipstick. The doctor ordered an ultrasound of his heart and kidneys as well as an MRI of his brain for the next morning.
Friday morning we headed out for the MRI. I felt some relief because things were happening. Jacob was receiving the drug and we had to believe that it would work. The doctor said that he would come back Saturday morning to discuss the results of all of the tests. Matthew was staying with our parents while we were at the hospital so Matt left that afternoon to visit him and stay for dinner. My mother, aunt, mother-in-law, stepmother, and father stayed with me. But after Matt left the hospital, the doctor came back and asked if we could go somewhere to talk. As soon as I saw him, I knew it must be something terrible. I called Matt to see if he could come back but he was already stuck in traffic so we put him on the speakerphone and went to a small room, the doctor, me, my mother, and my father. He told us that he had suspected some sort of brain abnormality as the cause of Jacob’s Infantile Spasms because Jacob had not been using his right hand and lacked an awareness of the right side of his body. He said that the MRI showed that Jacob had a stroke sometime during the last trimester of my pregnancy. He assured me that there was nothing that I did to cause it, that it was unlikely to ever happen again in his life. He said that Jacob had a large cavity on the left side of his brain; roughly two-thirds of his brain was missing. My first question was will he be able to speak to us? The doctor said that he would probably learn to speak and would probably learn to walk and may even go to school but it was not certain as to how he would comprehend language. Matt could barely hear what was going on with the speakerphone so I called him back and repeated what the doctor said. I didn’t want to see the MRI. It was difficult to understand what had happened to Jacob. His brain had been fully formed at one point and then a part of it was gone just like that. And then I thought how was he born then? And how did we not know all this time? He fooled us for 7 months. As the doctor told us, he had been recovering since before he was born.
On Saturday, my father picked me up at the hospital to visit with Matthew at the Touch-a-Truck in Portsmouth. I was sad. I missed Matthew. I missed Jacob. I went back to my father’s house to get my Explorer, which I had left there on Thursday morning and we cried some more. I went back to the hospital after about an hour and Matt and I spent the rest of the day learning how to draw up the medication with one needle and to give the shot with another. We used oranges to simulate Jacob’s muscle tissue in his thigh and then each of us gave Jacob one of his injections.
Sunday was Mother’s Day so the doctor decided to let us go home. My mother and stepmother had gone to our house the day before to pick up for us and everyone came over to help us settle in. We took all of our plates and bowls out of the cupboard to make room for all of the needles, syringes, gauze, alcohol pads, and band-aids we would need to continue the injections over the next five weeks. We even had our own sharps container. I took Family and Medical Leave from work to stay home with Jacob and all of our parents took turns watching Matthew in the mornings and afternoons. My husband and I leaned on each other and we leaned on our family. We tried to hide the injections from Matthew and hid in the garage when we needed to be afraid or depressed or sad. I thought at times that Jacob at 7 months old was the last that I would know him as he was. The doctor told us to stay away from the Internet but I had to take a peek and was terrified by what I read. Infantile Spasms was likely to result in mental retardation and could result in autistic like behavior.
After our first visit back to the neurologist, Jacob was not cured but his EEG had improved. After the second visit, the EEG showed no sign of the Infantile Spasms. So the five weeks of injections had worked. Jacob was still having seizures however, a consequence of the structure of his brain. The doctor prescribed an anti-seizure medication and after the first dose, the seizures stopped.
We got over what might have been pretty quickly. Jacob was born this way. We were already in love with him and nothing had changed except that we became aware of some of the challenges that we would face as a family. Jacob is a sweet little boy, a gentle giant.