Pointless Story Part III

If 4.5 million children were born in a year, maybe 1,500 of these children would develop Infantile Spasms (IS) in their first year of life. And maybe 1,200 of these children would have symptomatic IS in which an underlying condition would be identified, of which maybe 400 children would be diagnosed with a brain malformation. Only about 100 children with various forms of epilepsy including IS would have hemispherectomy surgery and of these children, 2 may die.

To all of the families and children who came before Jacob, we thank you. Jacob is only 1 child. Our child.

Epilepsy surgery, particularly hemispherectomy surgery, seems to be a primitive measure. Even so, hemispherectomies performed today are more advanced than a decade ago - thanks to the children who came before Jacob and advances in diagnostic imaging. Perhaps when Jacob has grown to be a man, stem cell therapy will be available because of children like Jacob whose brain tissue was donated for epilepsy research.

I travel in small blog circles - infantile spasms and epilepsy surgery. I have been troubled by the stories of children who had been diagnosed with IS and had relapsed and from the number of drug trials that these children had endured before being considered for epilepsy surgery.

Jacob's epileptologist characterized Jacob's seizures as "relatively mild" and during the conference at which Boston would determine whether Jacob was a surgical candidate, there was discussion about proceeding with additional drug trials because Jacob had only been on phenobarbitol and depakote. However, the panel considered our wishes - to prevent seizures, however mild, and anti-seizure medication from impinging upon the development of the right hemisphere of his brain.

Jacob's neurosurgeon intimated that all roads would lead to epilepsy surgery whether we decided to proceed with additional drug trials or wait and see if Jacob's seizures became more severe. Although Jacob has significant developmental delays, he did not regress after he was "cured" of Infantile Spasms. He came back to us and we were unwilling to experience losing him ever again.

There is no cure for brain malformation however. The point of this seemingly pointless story? I unequivocally believe that every single 1 of the children who develop IS as a result of a brain malformation should be considered for epilepsy surgery upon diagnosis.

What are your thoughts?

Dip Dip

Jacob's swallow study was this morning and he does not appear to be aspirating food or liquids. He does appear to be eating everything however as long as it's been dipped in thousand island dressing. He has started an antacid "drug trial" to see if acid reflux is creeping into his lungs.

He has been on breathing treatments every four hours except at night (which would be a six hour stretch when he wakes in the middle of the night and ends up in our bed AGAIN) for about three months. He has an ear infection. He had one about six weeks ago. His oxygen level in the doctor's office this week was in the low 90's, which is stable but upsetting because he used to register at 100. We will see the pulmonologist again in two weeks to discuss what to do.

Pointless Story Part II

I was definitely shopping around for brain surgery. I had seen Jacob's MRI. I was convinced that the only explanation for how well he was functioning with seizures was a healthy right hemisphere. I hated the left hemisphere as if it was a parasite rather than a part of Jacob. I would have pushed for surgery sooner except that we were told that Jacob would have to fail at least two medications before a neurosurgeon would even look at him. When Jacob was switched from Phenobarbitol to Depakote following the EEG in February 2010, I started pushing. Jacob's MRI convinced Boston as well. I cancelled our appointment with Detroit for a few reasons - Boston, travel and expenses, and Constraint Therapy II scheduled during the time that Detroit would see us. Boston was not interested in doing any additional testing (not even an EEG), which was a source of anxiety for me.

I rewind, fast forward, and play all of the time to be sure that I am acting on behalf of Jacob and not my own anxiety. This is a monumental task and as I wrote in Part I, hopefully I have been in God's hands.

Pointless Story Part I

I feel like telling a story and like all of my stories it is told through my tired eyes, my own experiences, and my own perceptions. Jacob has always been in God's hands. Hopefully, I have been too.

I created this blog, originally titled "The Jacob Fund", as an informational website for a benefit held in December 2009 to raise money for Jacob's Constraint Therapy in February 2010. I documented his daily progress in the program to share with everyone who supported our family. The blog was intended to be hopeful. I did not intend to interject my own feelings. However, during the Constraint Therapy, Jacob began to show increasing signs of seizure activity and I was scared. I was scared because Jacob continued to have seizures after his Infantile Spasms were resolved in June 2009.

The blog was not intended to be about epilepsy and as such most of Jacob's seizures are not documented here. This I regret. I did not take videos of Jacob's Infantile Spasms because they came on so fast and within a few days he was diagnosed and admitted to the hospital. By the time we were discharged, I don't remember if we were still seeing the spasms. I do remember our first follow-up EEG two weeks later. It was still showing Infantile Spasms but it was improved from the first EEG. And two weeks after that, the EEG pattern had resolved.

I have dozens of videos from June 2009 until his surgery in December 2010. I posted one. Jacob's EEG in February 2010, during the Constraint Therapy, convinced his neurologist that he was having seizures when my video did not. The EEG report stated "Infantile Spasms imminent". To read those words... difficult to process, reality is lost. The surgical consult became my reality.

My coping strategy was to stay up late and read and I came across a number of blogs that mentioned Detroit and a Dr. C. I read an article by Dr. C and decided to email him about Jacob. He graciously offered to review Jacob's medical records so I sent them and within a few weeks his assistant called to schedule an appointment. We also had an appointment in Boston. My thinking was that in the event that Boston rejected Jacob, we would go to Detroit. I had never been resigned to medicating Jacob for the rest of his life.

My tired eyes are "wrinkly" as Matthew says when he is sleepy so this seemingly pointless story... to be continued...

Transition

Jacob is special. We surround him with people who know that he is special. He is the center of attention. He is never ignored. We celebrate everything that he does. So I should not have been surprised when he went BERZERKO at a birthday party last weekend during the Star Wars themed yoga instruction. There were children younger than him, older than him, the same age as him, and he was the only child yelling "ME ME ME" and chasing after the instructor and walking all over the other childrens' floor mats. But I was surprised - pleasantly surprised to see him so engaged. When it was time to jump, he stomped around. When it was time to run, he squealed and turned in circles as the other children ran by him. But he was run over a few times and one little girl didn't like him on her floor mat so she pushed him off. He doesn't know that he is special in a disabled sense. Most people don't know, which brings me to a conversation I had with Jacob's Early Intervention service coordinator during our first transition meeting - Jacob's transition to the public school system.

Jacob has always been a paradox. No one would ever believe that the Jacob at the Star Wars birthday party had a left middle cerebral artery infarction, infantile spasms, or a left functional hemispherectomy. He has made significant neurodevelopmental progress, which did not happen by magic, but by blood, sweat, and tears (literally) and medication. One of my concerns about transition is how much "progress" will determine the frequency of Jacob's therapy once he turns 3 and begins attending the public schools. Jacob's progress also includes mechanisms by which he compensates for or mediates his disabilities. To me, this is more a measure of functionality rather than true ability. For example, he has begun to combine thoughts.

Jacob - Mommy

Me- Yes Jacob

Jacob - Jhuvoh (shovel)

Me - You want to shovel?

Jacob - Yah

Jacob - Mommy

Me- Yes Jacob

Jacob - Dig dig.

Me- You want to dig outside with your shovel?

Jacob- Yah. Me.

Me- Okay, when we get home.

Jacob - Mommy

Me - Yes Jacob

Jacob - Jhuvoh

Me- Okay Jacob. When we get home we'll go outside and play with your shovel.

This may be very similar to combining words but he still needs speech therapy. He still needs physical therapy and occupational therapy. He is special AND he is disabled.

Whose Been Sleeping In My Bed?

Since I don't label my own posts, I had to search through the archives to find when Jacob first slept through the night in his own crib. It was last May when he was 19 months old. By October, he was sleeping in our bed again which prompted us to finance a king-sized bed for Christmas.

Jacob is an enormous two-and-a-half year old. He is restless in his sleep, often laying horizontally with his toes searching for bare skin or warm crevices like butt cracks. And so, the king-sized bed has grown smaller and smaller and I have relegated myself to the couch.

But last night, Jacob reluctantly slept in his crib. And again tonight. So I have reclaimed my side of the bed.

Sweet dreams.

Happy 4th Birthday Trevy - my inspiration for changing the course of Jacob's life.