Tuesday, June 29, 2010


At our appointment last Tuesday, Jacob's epileptologist asked for his EEG records on disc to be FedExed to him so he could present at their neuro department conference today. When I called on Friday, the records had not yet been received so I drove for hours to pick up the records myself at Hasbro and in Seekonk and then overnight mailed them through the post office. The records were received yesterday so I have no idea if there was enough time to review them in order to present today... Of course I'm going to call this afternoon but I don't want to hear that we have to wait until next Tuesday because then we still have to wait for the scheduling process to begin. Life is on hold until we have a date. My 0-3 years old clock is ticking.

Update: No news. Maybe next week...

Thursday, June 24, 2010


We found another image of Jacob on Hasbro's website, as part of a slideshow.

And... I borrowed it from the website.

Wednesday, June 23, 2010

About That Stroke

The epileptologist also said that Jacob's stroke must have occurred very late in the pregnancy if not at birth because of the symmetry of his body. If the stroke had occurred earlier in the pregnancy, then the right side of his face and his right leg and foot would have developed abnormally. Also, while Jacob delivered quickly, the process was more difficult than with Matthew. If the stroke occurred prior to birth, Jacob may have had trouble pushing himself out during the delivery. What is upsetting to me is that I went to the hospital two days in a row the week before Jacob was born because I thought my "bag-o-waters" broke... twice. I was still teaching at the time and called my father to pick me up from school. I was a bit frantic. The "waters" were tested... no amniotic fluid... twice. I was also hooked up to a fetal monitor and I was given apple juice to stimulate Jacob. I may have to order my own medical records to understand what happened to Jacob. I know it doesn't really matter but I do need closure.

Finally, after reading my own post from yesterday, I thought it was weird that I used the word "cheer" in the same paragraph as neurosurgery and developmental delay. Jacob will lose the potential for fine motor control of his right fingers. I was playing with those fingers this afternoon then sobbing for those fingers. But he has so much to gain - the potential to be seizure-free and medication-free and therefore to develop to his fullest potential cognitively. It is all about perspective.

Tuesday, June 22, 2010

Here's to Jacob

Jacob's epileptologist also agrees that he should have neurosurgery. He said that the left and right hemispheres compete for dominance and that the electrical activity in the left is interfering with the right's ability to take over the functions of the left hemisphere. He said he should have the surgery as soon as possible. The neurology/neurosurgery departments at Children's Hospital Boston will meet next Tuesday to discuss Jacob and to make a formal recommendation. Jacob also had his gross motor skills evaluation and although he is delayed, his scores have improved since last year. Finally, we received the results from Jacob's Constraint Therapy and he went from a percentage score of 2% to 26% for use of his right hand! I feel like I'm writing one of those Christmas newsletters except this one is about Jacob's brains. Nonetheless, it's full of cheer.

Monday, June 21, 2010


Jacob's one year evaluation results... receptive communication and social emotional no delay, expressive communication delay, adaptive skills delay, fine motor delay, cognitive delay, and gross motor not yet evaluated but delay. Since last year, Jacob has improved in his adaptive skills and his receptive and expressive communication. Tomorrow is our big day in Boston. We'll keep you posted...

Thursday, June 17, 2010


During OT and PT Jacob has been working on transitioning from one position to another. For about a week he has been responding when I ask him "how do you get down" from our bed or the couch by rolling to his belly and moving backwards until he slides off the edge. This is very exciting because before he would just scoot forward and attempt to fall off. We are also working on Jacob transitioning from sitting to standing by getting to his knees, bringing one foot up to push off on, and then pulling up with me holding his hands. This is much more difficult for him and he needs a lot of support but he understands what he has to do and with practice he will be able to do this as well. For about a month, Jacob has been able to hold on to a railing with his left hand, lift his left leg up to push off on, pull up with me holding his right hand, and lift his right leg up to climb up stairs, again with a lot of support but he understands how to do this.

It is a testament to his self-determination that he is able to learn these gross motor skills in such painfully small increments, and once learned, to will his body to perform these tasks. This extraordinary child just wants to be an ordinary little boy.


Jacob's orthopaedist prescribed a right articulating AFO, a brace to help him keep his right leg and foot forward rather than turn out when he is walking. The structure of Jacob's hips is normal. Our next big appointment is on Tuesday when we see the epileptologist in Boston. He will help determine if Jacob should have neurosurgery. While the neurosurgeon looks at Jacob's MRI scan and EEGs, the epileptologist will also be looking at Jacob's developmental progress through Early Intervention.

P.S. My Father's Day t-shirts came in... this one is inspired by Jacob of course!

Disclaimer: I didn't design the t-shirt myself, I just ordered it because it looks like Jacob. Sorry Nana Ripa, I'm not THAT amazing!

Monday, June 14, 2010


This afternoon Jacob will have his annual evaluation for his IFSP (his service plan). I am keeping my fingers crossed because last year his scores were so low except for social and emotional skills. The truth is I am hoping that his cognitive scores have improved. We all know that he is an intelligent being but I guess I want to see it in writing.

Saturday, June 12, 2010

The Week in Review

On Monday afternoon, Jacob had OT and Speech. In the evening, we were honored to receive the proceeds from the Oil Heat Institute of Rhode Island's Annual Charity Golf Tournament. Thank you Julie, Roberta, and Dennis for a special night.

On Tuesday morning, Jacob had PT and walked up Grandpa's street in his gait trainer.

On Wednesday afternoon, we saw Jacob's pediatric ophthalmologist who again suspected right hemianopsia but could not do a formal visual field test because he is still too young.

On Thursday morning, Daddy took Jacob to attend his first session of Aquatic Therapy at Hasbro Children's Rehabilitation Center. He loved it and worked very hard. The therapists thought he was adorable.

On Friday morning, Jacob had OT. In the afternoon, Grandma and Grandpa brought Matthew and Jacob to gymnastics at the YMCA. Mommy went home to do a load of laundry and dishes and to stuff her face and watch tv.

Tuesday, June 8, 2010

Saturday, June 5, 2010

Tuesday, June 1, 2010

A Few of My Favorite Things

The fuzzy hair at the back of his head and the pile of curls on top, the gap between his front teeth, the lopsided gait, the sign for milk, and the sound of "aei" (airplane).

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