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This website was created as a continuation of our family website to keep everyone up-to-date on Michael's progress.
Michael was diagnosed with tuberous sclerosis on January 7, 1999. Tuberous sclerosis is a genetic disorder that causes non malignant tumors to grow in any vital organs of the body, such as the heart, brain, kidneys, lungs, eyes, and skin. Michael has a seizure disorder and Autism as a result of tuberous sclerosis.
You can read about Michael's earlier experiences with TSC on our family website: http://home.comcast.net/~mjorski
Michael’s banner made with love by The Big Brave Banner Site
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Click here to watch a video of pictures of our friends with TSC
Click here to watch another TSC video
New TS video 11/05
I Often Sit and Wonder
I often sit and wonder what you would say.
I have a feeling that you would talk for days.
Would you tell me that it hurts so bad,
Or would you say I love you mom and dad?
Don't worry my son I know what you want to say
You tell me in your own special way.
The way you wrap your arms around me tight.
The way you smile as we cuddle every night.
I often sit and wonder what you would want to be.
I have a feeling you would say
I just want you to be proud of me.
A teacher, a great leader, a sales man or a fireman?
But there was someone who had a much bigger plan.
Don't worry my son I know what
you were sent here to be.
A special gift to love and cherish just for me?.
No, you had a special mission from the day of your birth. A special angel sent to teach of peace
and love to all of us on earth.
I often sit and wonder how I can be so blessed
And If I am passing this very important test.
To love and protect someone so special and dear
To trust in God's will and trust that he is near.
Don't worry my son I will walk beside you every step
And when you are weak in my arms you will be kept.
You are my special angel and were sent to me on loan
But for all eternity a family we will be known.
Written by Julie Presley for her son Collin
 
Michael with ex-Mariner Jay Buehner
Julianne Moore appears before the House Appropriations Labor-HHS-Education Subcommittee on April 19th, 2005, with Tom Lindsey (father of Tommy Lindsey who has TSC) and Nancy Taylor (TS Alliance CEO)
Pictures provided, with permission, by Jaye Isham
Please click on the link above and sign it so we can see where our friends are from, and please sign our guestbook.
Journal
Friday, June 29, 2007 11:08 AM CDT I can't believe it's been almost 10 months since my last update! What a busy year it has been! There are so many of you that I haven't had a chance to keep tabs on and for that I am sorry. I am planning to visit your Caringbridge sites here soon to surprise you!
First of all, the MRI that Michael had last year showed what the radiologist thought looked similar to Sturge-Weber Syndrome and was questioning this diagnosis. Michael's neurologist calmed my fears and told me he was pretty sure Michael didn't have Sturge-Weber. So that is now behind us.
Michael is doing really well. I am so proud of his accomplishments this year! His speech has really taken off and he is able to start telling us what he wants. He can say Go Outside, Go Upstairs, Bus (for bed), Get Up -- these are the ones that come to mind at this time. I really need to sit down and make a list. The one thing I am trying to work with him on is saying All Done. He says GoShana (?). It's very consistent. Michael is still not potty-trained but we are working on that.
Michael can now identify all of the alphabet and can count to 10! He is showing interest in being read to and loves looking at his Disneyland photo album. He still loves sports balls and has a multitude of sport ball shirts. He insists on picking out his shirt every morning and his sleepers (also sport ball) every night.
Michael is also starting to take interest in his peers, something he's never really done before. He's been quite the little flirt at school and enjoyed holding hands with two girls in his class. Michael learned how to make those sucky, kissy, popping sounds with his mouth from Logan who is his friend on the bus.
The best news I received at the end of the school year is that everyone will be returning next year! Michael will have the same teacher, therapists, and bus drivers! They work with Michael so well and have done a fantastic job with him.
I hope to be able to update Michael's website soon with new pictures.
Susan
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