Monday, August 30, 2010

Reassurance

I wanted to share the following emails between me and Jacob's neurologist...


Good morning Dr. B. I don't know if you have had any correspondence with
Boston, but we did get a call that they will move forward with his surgery. We
are supposed to get another call this week to schedule a date. If you can
believe it, I am more anxious than ever before. I'm having a hard time letting
go of his brains because my understanding of the brain is so limited. So I have
a few last questions for you and if you prefer, I'll schedule an appointment to
discuss... again. I'm also going to meet with Dr. M again to talk about
the particulars of the surgery and recovery process.

Given the extent of damage to Jacob's left hemisphere, how do you explain his
progress?

We think that he is normal even better than normal in terms of his social,
emotional, cognitive, and receptive communication skills. We only see deficits
in his motor and expressive communication skills but he is improving in these
areas. Would disconnecting the left hemisphere stop his progress in these
areas? I read his EEG reports and recall our office visits and have the
impression that most of his seizure activity was coming from the front and the
back. Does the middle strip of tissue remaining contain motor and speech
functions? Can the right hemisphere assume expressive communication functions
including written language? Would he plateau at some point anyways even if we
left that tissue to function? During Constraint Therapy this time, Jacob has
been able to move his index finger independently although very slightly. How is
this possible?



Lots of questions...

His progress is reassuring. You need to remember that it is occurring in spite
of his brain malformation.

Freedom from seizures will only accelerate the developmental gains you have
seen.

The malfunctioning brain tissue is not contributing one bit to his development.

children who have entire hemispheres removed are capable of considerable
positive development, due to the normally functioning other half. that includes
the non-dominant hemisphere assuming functions normally delegated to the
dominant half.

remember that the front and back portions of the seizing hemisphere are the only
portions "visible" to the EEG. there is no brain tissue in the middle.

I understand your anxiety. I would never have suggested moving forward with this
had i though for a moment it would not help or worse, would hurt.

He is in good hands.

Saturday, August 28, 2010

The End is Just the Beginning

Constraint Therapy II has ended. For 21 days, Miss Casey was a regular for breakfast and lunch. She pushed Jacob, challenged him, worked his muscles and his mind. He learned to say "eee" for eat, "sch" for chip, "hah" for hot, "tsh" for shhh, and "bpe bpe" for pee-pee during the last month. He learned how to get up on his knees and get down on all fours. He also learned how to get out of his cast... twice. Once the cast was off, he reverted to using his left hand. At his daycare's Open House yesterday, I watched him carry around a plastic cell phone in his left hand and as he walked by the toy kitchen, he slammed the microwave door closed with his right. He walked by the Elmo restaurant at home last night and slammed the refrigerator door shut with his right. Just as we noticed from the first round of constraint, the skills are never lost. They are retained but they are difficult to maintain. The brain knows and when he calls upon the skills that have been learned, they will be there for him. He has not yet learned to play with both hands together because he has never needed to. He adapts. He'll use his feet or his mouth. But as he grows and develops and desires to play with more challenging toys, his muscles will remember. I believe this. So my feelings are bittersweet right now. So happy constraint is over but so sad that Jacob's whirlwind of progress will not always be so apparent. So sad not to see Miss Casey on Monday morning... but it will be Jacob's first day of school.

Friday, August 27, 2010

Day 26

I forgot to bring the video camera...

Thursday, August 26, 2010

Tuesday, August 24, 2010

Faith

I always wish for Jacob to be healed. But I never pray. I don't know how to pray. He must be listening anyways.

Day 23

video

video

Monday, August 23, 2010

It's Time

Appointment with neurosurgeon on September 14th.

Pre-op appointment on October 12th.

Neurosurgery on October 13th.

Sunday, August 22, 2010

Day 21

Jacob made several attempts to crawl today!

video

Day 20

Friday, August 20, 2010

Neurosurgery

Jacob has been approved for neurosurgery at Children's Hospital Boston.

Day 19

The pediatric model of Constraint Therapy was developed in 2007. Jacob first had the therapy when he was 16 months old. He is now 22 months old. He likely is the first child with his particular diagnoses to have participated twice before the age of 2. In the following clips, whipped cream is used as motivation for Jacob to extend his right pointer finger. We have been told that Jacob will never have independent use of his right fingers because of the extent of the damage to the left hemisphere of his brain...


video


video

Thursday, August 19, 2010

Wednesday, August 18, 2010

Day 17

Jacob is a paradox. He is perfect. He is damaged.

Tuesday, August 17, 2010

Day 16

We are pooped.

We need to find someone to assist Jacob at daycare during playground time in order for him to participate safely. He has scraped his skin and has bruised his face when he has fallen in my presence and my ratio is only 1:2. He needs 1:1. He can do everything with assistance - run, jump, climb, slide, swing. Without assistance, he cannot do any of these things. So if you know of anyone...

Monday, August 16, 2010

Sunday, August 15, 2010

The Washington County Fair




Day 14

Washington County Fair today!

Jacob's art smocks for daycare...

Saturday, August 14, 2010

Day 13

I swear I saw Jacob moving his right pointer finger towards the ketchup on his plate. He loves ketchup.

Friday, August 13, 2010

Wednesday, August 11, 2010

Day 10

Jacob wore his AFO (ankle-foot-orthotic) for an hour today. I will post pictures tomorrow.

video

Tuesday, August 10, 2010

Monday, August 9, 2010

Day 8

video

"P" "h" "D"

I was studying discourse analysis in a doctoral program. I have been on a leave of absence and will probably have to withdraw from the program. No regrets. I am learning so much about language through Matthew and especially Jacob.

I wonder how the neurological pathways developed through Constraint Therapy affect the development of speech and language. During his first week of therapy, Jacob has been vocalizing more than ever before. He attempts to imitate consonant sounds like "s" and "p" and "h". He is telling us stories without words but uses his mouth and his voice. He responds to words with actions - for "pee-pee" he walks to the bathroom and gestures towards the toilet and for "Naughty Chair" he laughs at us and looks to find the Thomas the Train chair.

The right hemisphere of Jacob's brain is assuming the speech and language functions of the left because the tissue simply does not exist. I am hoping that the right hemisphere is also assuming the motor functions of the left that we are seeing through Constraint Therapy.

Sunday, August 8, 2010

Day 7 - Freedom

Jacob managed to wiggle out of his cast today. He has taken to hitting Matthew and everyone else with it. Matt and I were able to put it back on after giving him a bath of course.

video

Saturday, August 7, 2010

Sleepy, Sleepy

After three and a half hours of therapy, 6:30 am - 10:00 am, Jacob falls asleep in the glider while Casey stretches his arm and hand. He naps for two hours and resumes therapy from 12:00 pm - 2:30 pm.

video

Friday, August 6, 2010

Thursday, August 5, 2010

Wednesday, August 4, 2010

Tuesday, August 3, 2010

Monday, August 2, 2010

Day 1

I have a feeling that Jacob is going to ROCK the clown in the Constraint
Therapy II post-evaluation. Watch Day 26 before watching the following clips...

video

Sunday, August 1, 2010

Sharing a Moment

I read this post in May after bringing Jacob home from the hospital. I wasn't able to get past the second line at the time because I was a different mother then. Tomorrow Jacob will begin Constraint Therapy II and I am nervous and excited and know that he is a wonder.


Mothers Lie
By Lori Borgman





Expectant mothers waiting for a newborn's arrival say they don't care what sex the baby is. They just want to have ten fingers and ten toes.





Mothers lie.






Every mother wants so much more.She wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin.






She wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly.






She wants a baby that will roll over, sit up and take those first steps right on schedule.






Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions.







She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class.






Call it greed if you want, but a mother wants what a mother wants.








Some mothers get babies with something more.







Maybe you're one who got a baby with a condition you couldn't pronounce, a spine that didn't fuse, a missing chromosome or a palate that didn't close.








The doctor's words took your breath away.







It was just like the time at recess in the fourth grade when you didn't see the kick ball coming, and it knocked the wind right out of you.








Some of you left the hospital with a healthy bundle, then, months, even years later, took him in for a routine visit, or scheduled him for a checkup, and crashed head first into a brick wall as you bore the brunt of devastating news.








It didn't seem possible.









That didn't run in your family.







Could this really be happening in your lifetime?








There's no such thing as a perfect body.








Everybody will bear something at some time or another.








Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, therapy or surgery.









Mothers of children with disabilities live the limitations with them.









Frankly, I don't know how you do it.








Sometimes you mothers scare me. How you lift that kid in and out of the wheelchair twenty times a day. How you monitor tests, track medications, and serve as the gatekeeper to a hundred specialists yammering in your ear.








I wonder how you endure the clich├ęs and the platitudes, the well-intentioned souls explaining how God is at work when you've occasionally questioned if God is on strike.









I even wonder how you endure schmaltzy columns like this one-saluting you, painting you as hero and saint, when you know you're ordinary.







You snap, you bark, you bite.








You didn't volunteer for this, you didn't jump up and down in the motherhood line yelling,"Choose me, God. Choose me! I've got what it takes.








You're a woman who doesn't have time to step back and put things in perspective, so let me do it for you.








From where I sit, you're way ahead of the pack. You've developed the strength of the draft horse while holding onto the delicacy of a daffodil. You have a heart that melts like chocolate in a glove box in July, counter-balanced against the stubbornness of an Ozark mule.








You are the mother, advocate and protector of a child with a disability. You're a neighbor, a friend, a woman I pass at church and my sister-in-law.








You're a wonder.