Thursday, April 29, 2010


Jacob has used the sign for milk a number of times this week. He has been rubbing blankets and clothes on his face so, Amanda Aswell, we need another My (the name of Matthew's blanky) STAT! Matt and I have been attending a class on the Hanen Program to help us to help Jacob communicate. His receptive language is age appropriate but his expressive language is delayed. Jacob will be going to Hasbro once a week for Aquatic Therapy soon. Matthew is starting gymnastics at the Y tomorrow. (Video anyone?) Matt and I are exhausted...

Sunday, April 25, 2010

April Vacation Shout Out

Some crossed the USA and others the Sakonnet River Bridge to spend some quality time with our boys this vacation...

Little Sister
Big Brother
Baby Cole
Aunt Mary
Aunt Hope
Uncle Sam
Aunt Nancy
Aunt Betsy
The Tiverton Five

To the Island People: Every time is quality time!

Wednesday, April 21, 2010

Tuesday, April 20, 2010


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.

Sunday, April 18, 2010

Untitled Post

Jacob's pediatric neurologist wrote the following report from his appointment last Wednesday: "No signs of encephalopathy... I recommended proceeding with a neurosurgical consultation... surgical evaluation maybe curative for seizures... No evidence clinically for return of [Infantile Spasms]."

Although I have always considered neurosurgery as a possible treatment or cure for Jacob's seizures, this appointment made it all so real for me and it flipped a switch. I realized that I have been driven by fear - fear of the past coming back to haunt us and fear of the future that is unknown. Out of fear I have looked at him like a seizure waiting to happen.

He is becoming fearless, taking steps on his own all over the house. He is riding the Gator with his brother and following directions when I tell him to hold on for his life with TWO hands. He knows where his eyes, ears, nose, and mouth are, eats with a fork and a spoon, sips from a straw, and understands push/pull, in/out, and up/down.

We are going to follow through with a surgical consultation, not out of fear but out of hope.

Saturday, April 17, 2010


Matt Sr. made a seat belt for Jacob to finally
ride in the Gator. Matthew Jr. was upset
because he had to drive slowly.

P.S. We added a crotch strap after filming
this video.

Providence Journal Article

Robots help stroke victims

01:00 AM EDT on Saturday, April 17, 2010
By C. Eugene Emery Jr.

Journal Staff Writer

PROVIDENCE — Using custom-designed robots strapped to the weakened arms of stroke patients, a team led by a Brown University researcher has demonstrated that intensive physical therapy can improve movement in people whose strokes occurred many years earlier.

The evidence is in a study, released Friday by the New England Journal of Medicine, in which Dr. Albert Lo and his colleagues randomly assigned 49 volunteers to robot-assisted therapy.

The computer-controlled robots, first developed at the Massachusetts Institute of Technology two decades ago, allow a patient to sit at a table with his arm strapped to a mechanical arm. As the patient tries to use the arm to play a rudimentary video game, the robotic arm guides the patient, when necessary.

“We looked at very severe, very chronic people who had been living with the aftereffects of a stroke for a very long time,” said Lo. “We now know if you provide this therapy, they can get better.”

But it wasn’t just the robot that made the difference.

A group of 50 stroke survivors showed similar improvement, compared with those who only received limited physical therapy, when human therapists helped move the arms to the same degree the robot did.

In all cases, the three-times-a-week therapy sessions extended over three months.

“We thought the robots would do a lot better,” said Lo. “So the good news is, if you can get a person to help you do that kind of movement, you can get fairly comparable results.”

The problem is, few therapists have the patience to do what the robot routinely did — make 1,024 repetitive movements per session.

During a traditional therapy session, the arm is moved only 45 times.

As a result, Lo said, using the custom-built robot should have its advantages, despite its current $180,000 price tag.

The discovery, if embraced by the medical community, would offer new hope to at least some of the 6.4 million stroke survivors still living with movement problems.

The conventional medical wisdom has been that, after about six months of treatment, most patients have regained as much muscle control as possible.

“When I was in medical school, if you saw someone a year after their stroke and they asked you how much movement they could get back, you would not be very optimistic about it,” Lo said. “Now, we’re not talking about curing the disease or transforming everything in their life, but we are talking about meaningful change.”

Some of the volunteers who showed improvement had suffered from multiple strokes. Some had experienced their stroke nearly two decades earlier, although the researchers are still analyzing whether the degree of improvement depended on how recent the stroke was.

The study was funded by the U.S. Department of Veterans Affairs and conducted at four VA medical centers. When Lo moved from the VA center in West Haven, Conn., to the center in Providence, he brought that robot with him.

Lo said even if the robots were widely used, it would not put physical therapists out of business.

In previous studies, patients preferred working with humans instead of a robot. In this study, a therapist was always there to encourage stroke victims as they worked with the robot.

“Human engagement is very important,” said Lo. “The therapist does the coaching and the robot does its job, which is the high-repetition movement part.”

Friday, April 16, 2010


I think that Jacob is finally learning to shake his head "no" and he has decided that he doesn't need to cooperate during therapy. He is beginning to remind me of his older brother Matthew who says he doesn't know where the potty is when we ask him if he needs to go...

Sunday, April 11, 2010

Sunny Days

Regarding the last post: Some days are dark
while most days are sunny and the blog is as
much about therapy as it is therapeutic.

Friday, April 9, 2010

Happy Anniversary

As we approach one year since Jacob was diagnosed with Infantile Spasms, I am grateful for the progress he has made. When Jacob was seven months old, I was preparing myself to love a different child because according to his pediatric neurologist, if the Spasms persisted, Jacob would become detached and eventually would not know who Mommy and Daddy were. Was seven months old going to be the last that I would ever know Jacob as he was? So I am happy. But I am also unsettled from Jacob's EEG a month ago which showed a modified hypsarrhythmia pattern, characteristic of Infantile Spasms. So while I celebrate his accomplishments, I am always looking for something. I am looking for all Jacob all of the time. What I am seeing is Jacob most of the time. Then there are a few periods of time during the day that Jacob is not there, although his arm is not thrusting forward and his eyes are not rolling to extreme corners. He is not there and I am haunted by this.

Saturday, April 3, 2010

Friday, April 2, 2010

Good Friday

Jacob, Mathew Jr., and I are spending the day together. Jacob has responded well to increasing his medication. We haven't noticed any seizures for a few weeks now. Matt Sr. and I are attending a language class called the Hanen Program to help Jacob learn to use words and he is receiving speech therapy once a week. His Early Intervention provider, Looking Upwards, has increased his Occupational Therapy to twice a week and will supplement his weekly Physical Therapy with Aquatic Therapy through Hasbro's Rehabilitation Department once a week. We are trying to get Jacob physically ready for daycare at Bright Ideas in September. Jacob uses his gait trainer daily although he would rather walk holding hands or take several steps on his own. He wants desperately to climb stairs and to ride in Matthew's John Deere riding toy. We are looking forward to April vacation and spending time with Uncle Chris and Aunt Dianne from Seattle and Auntie Allie, Uncle Lyle, and baby Cole from San Diego.