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My Grandson TommyLee

by TONI H / July 14, 2010 8:47 AM PDT

Many of you will remember that over ten years ago, at age 7 months, my grandson had a massive stroke that left him with only one side of his brain functional. He had to relearn how to do everything he had learned (rolling over, sitting up, eating, swallowing, sucking a bottle, making sounds, etc) and had lost motor function to his right leg and right arm/hand.

He went thru many years of extensive therapy but was able to enter public school and keep up with everybody else except for a few sports activities that he wasn't able to do.

Over the last few years, he began to have a great number of seizures and he got to the point that even massive amounts of medications, including rectal valium treatments were not able to control those seizures and he was barely functioning in school anymore.

He was recommended to the Cleveland Clinic's pediatric neurosurgical team two months ago. After a real barrage of testings, both neurological, physical, and comprehensive, their top man with extensive history as the 'top dog' in his field recommended surgery to cut out the areas of the 'dead' side of his brain that was showing all of the seizure activity. They were able to track that via electrodes over a week long period of time at the Clinic to make sure the seizures weren't coming from the good, functioning half. The seizures were originating from the 'dead' side but traveling to the 'good' side and then bouncing back again over and over again. These tests also gave the surgical team a 'baseline' that they could then compare his recovery to after the surgery itself and know/track Tommy's progress back to what functioned well prior to the surgery and gave them a way to know what he might now need further help with.

Tommy had his surgery two Mondays ago, and two days ago was transferred to their offsite rehab center where he was scheduled to stay for physical therapy on his right leg because of a hamstring shortage, but he has recovered so well that they are releasing him this Friday instead to go home. They have set up outpatient therapy for him at a Medina location since Dusty now lives in that area and are also making arrangements for transportation to and from that location for them. They hope to have him completely back in time for school to start in August so he can again walk without stumbling once in a while.

BUT HE HAS BEEN COMPLETELY SEIZURE FREE SINCE THE SURGERY DATE.

They still have him on his seizure meds, but in three months, they will cut it all back severely and see how he does. A month after that, they will cut back even more on a monthly basis until he is either one of the 75 percentile of patients that never again need to take the seizure meds or he will be in the 25 percentile that can function normally with a bare minimum of meds.

Needless to say, we are absolutely 'over the moon'. Tommy is eleven now, and although it was hard to get Dusty to agree to taking this 'risk', she was finally able to see that this was not about her fear, but rather about Tommy's chance to live a normal life finally without being disabled by seizures to the point of not being able to function in any quality of life environment.

TONI H

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God bless him Toni...
by Tony Holmes / July 14, 2010 9:14 AM PDT
In reply to: My Grandson TommyLee

You know my history,I share your joy!!!!

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(NT) Gosh I hope this works out for him!
by James Denison / July 14, 2010 9:27 AM PDT
In reply to: My Grandson TommyLee
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A real success story
by MarkFlax Forum moderator / July 14, 2010 11:34 PM PDT
In reply to: My Grandson TommyLee

and great to hear Toni.

Mark

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Praise God for a successful outcome!
by Desperado JC / July 14, 2010 11:45 PM PDT
In reply to: My Grandson TommyLee

That's really GREAT!

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Excellent!
by EdHannigan / July 15, 2010 12:02 AM PDT
In reply to: My Grandson TommyLee

I hope the good outcome continues.

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(NT) My wishes for continued success
by Willy / July 15, 2010 1:15 AM PDT
In reply to: My Grandson TommyLee
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amazingly fantastic wonderful news!!!!!
by jonah jones / July 15, 2010 2:35 AM PDT
In reply to: My Grandson TommyLee

Toni.... you made my day!

please pass on best wishes for a speedy (and complete) recovery


jonah

,.

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Update
by TONI H / June 17, 2011 9:11 PM PDT
In reply to: My Grandson TommyLee

It's almost exactly one year later, and Tommy is still seizure free....his medications have slowly been cut back over this past year to to the point where he is now also medication free and still no seizures.

He has a three wheeled bike (low to the ground like the 'big wheels' kids used to have when Derek was small) that he is able to ride, and he does all over the place. Two months ago, surgery was done to correct a hamstring issue because he was growing faster than the muscle could keep up with...and about 8 months ago, surgery was done to cut the tendon at his heel so for a while he was in a cast for both surgeries, but he is able to finally put his foot completely down on the floor and not walk on his toes with that foot. He still wears an ankle brace but there is hardly a limp now.

Next up is to fix his jaw...his teeth are all crooked and overlapping because his jaw isn't lined up correctly. That will be broken and positioned correctly (some time in the next two years since they had to wait for all of his 'baby teeth' to fall out), and then the teeth will all be fixed (perhaps with braces, perhaps with implants...not sure yet).

Last but not least will be his hand. He has full function and mobility with his wrist, forearm, and bicep/shoulder, but the hand, without the brace, still curls badly and even with the brace the fingers don't work and barely are able to move. Some thought has been going into, as gruesome as it sounds, removing the hand completely, giving him a fully functional mechanical hand, and finally give him dexterity in both hands so he will be able to hold down a job of his choice (I'm optimistic that jobs will be back) and ability.

He may or may not be able to drive...he has no peripheral vision on the right side of both eyes...corrective glasses at this point in time are not as successful as they hoped they would be, but technology is really leaping all over the place, so he still has time to see what comes down the pike for him.

In any event...his dad has a boat that is docked on Lake Erie, and for the first time in Tommy's life, he is spending the entire summer with his dad, kicking back, riding his bike all over the place, playing video games without having the game throw him into seizures, and being a kid. Tommy never saw his leg and arm as his disability...the seizures were his disability and he never believed he would be able to just hang like a normal teenage boy.....but he was gutsy enough to keep trying anything doctors threw at him to get that simple dream to come true.

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Good to read Toni.
by MarkFlax Forum moderator / June 17, 2011 10:21 PM PDT
In reply to: Update

The little lad is going through a lot isn't he. But he seems amazingly resilient and strong, and keeps bouncing back.

Great to see that he is improving all the time.

Do you get to see him much? I can't remember how far away you are from the family.

Mark

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(NT) Sorry, not wishing to pry or anything like that.
by MarkFlax Forum moderator / June 17, 2011 10:24 PM PDT
In reply to: Good to read Toni.
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I saw him
by TONI H / June 17, 2011 10:51 PM PDT
In reply to: Good to read Toni.

last September when he and some other family members all went to Manassas for Derek's son's (also named Derek) first birthday party. We were there for the weekend, and Tommy was in great shape but still on quite a few of his meds since his surgery was only done a few months previously. His meds have been getting cut back slowly every two months to see how he did so they could be brought back to the last level without seizures if that needed to be done. He gets his meds cut to zero next week and everything is indicating that he will do well without them.

I live about 400 miles from my daughters and their families...about 150 miles less from Derek. Derek and Heather get stationed in Norfolk in November for his next duty station, and although the miles are roughly the same, there is no clear interstate giving a straight shot from me so the time to travel there will be a little longer (closer to the 6-1/2 to 7 hrs it takes me to travel to the daughters instead of the 5 it takes me to travel to Manassas).

Tommy still has a ways to go but he's still young enough to heal quickly after each procedure and have most of it over with while still a teenager before graduating.

BTW...Derek and Heather just gave birth to their second son on June 5th...Carter. He will probably be the bigger of the two boys because he weighed in at 9-7 which is nearly two pounds heavier than Derek Jr was and was 20-1/2 inches long..about an inch longer than Derek as well. Carter looks more like his dad when he was born than Derek, Jr did but Jr has a real nice blend of both parents. Both had no 'wrinkled' skin appearance but instead nice full bodied 'meat' already in place...heheheh. Jr is short statured with full torso from hips to shoulder, but shorter legs...Carter is equally proportioned with legs being the length you would expect with a long torso. Jr already believes that Carter is a great little stuffed animal that he can lay all over and has to be reminded often that he has to lie next to him and not on him. lol

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Oddly enough
by James Denison / June 18, 2011 12:45 AM PDT
In reply to: I saw him

My daughter's heights are in exact reverse of their birth order. The first is the shortest and the last will be the tallest, she's already within an inch of her taller middle sister and just had 12th birthday. She's stolen all her oldest sisters clothes she could scrounge while Niki's overseas and starting to sneak her bigger sister's clothes that have been left at the house. It's kind of funny hearing Niki on the phone from Japan saying, "She took what?! My Converse All Stars?!! I'm gonna kill her when i get back!"

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So you're a Granny again?
by MarkFlax Forum moderator / June 18, 2011 9:43 PM PDT
In reply to: I saw him

Excellent, and you've still got all your marbles, Devil

Mark

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(NT) That's Good News Toni...Happy for you and your family.
by JP Bill / June 17, 2011 10:37 PM PDT
In reply to: Update
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Glad to hear the good news.
by Roger NC / June 18, 2011 12:49 AM PDT
In reply to: Update

Best wishes for continuing improvement quickly.

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(NT) That's fantastic
by Diana Forum moderator / June 19, 2011 11:28 AM PDT
In reply to: Update
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That is wonderful news
by James Denison / June 18, 2011 12:38 AM PDT
In reply to: My Grandson TommyLee

Epilepsy can be so disabling and it's amazing what they can do with those electrodes in stopping errant electrical activity that causes it for some people. We've had some great advances in medicine in that area. I've tried talking a friend whose grown daughter has frequent epilepsy attacks to consider that electrode therapy, but so far her daughter is very resistant to doing it. I think for many there's the fear of losing some of who you are, although I think that may be an unreasonable fear.

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