Welcome to Jordan's Page. It has been provided to keep our friends and family updated about Jordan's progress.

Jordan Michael

Born: Sunday, July 11, 2004, 4:57 pm

Weight: 5 lbs, 14 oz Length: 16 1/4 inches

Jordan has a rare condition, caudal regression syndrome. He was born with a dislocated knee, clubfeet, dislocated hips, a strange cyst on his nose, and ear tags. He also had the most peaceful and knowing look ever since the day he was born.

He has had eight surgeries:
1. on both his feet to correct his clubfeet (2/2/05, age 7 months)
2. to remove two small cysts in his sacral area (4/12/05, age 9 months)
3. on his dislocated left knee and right foot (9/12/05, age 14 months)
4. on his left foot to put it into alignment with his newly aligned knee (10/13/05, age 15 months)!
5. urology surgery to remove extra skin plus, done on the same day, removal of more of the extra ear tag skin and removal of cyst on his nose (3/6/06, age 20 months)
6. Ear tubes (don't really consider this a "real" surgery!! :) (5/??/08, age nearly 4)
7. Surgery on both legs for tibial torsion and to recorrect clubfeet (11/24/08, age 4)
8. Root canal (9/18/09, age 5)

When he was born, the doctors were clueless and told us he might not even live to age 1. But now he is 5 years old and is doing so well. He is in kindergarten and loves it and has made a lot of nice friends. He now READS a little, he takes drum lessons, and he is in an acting program. It’s amazing to watch him every day, knowing all we have been through as a family to get him to the point he’s at now. To see him just run around on the playground with his crutches, doing all kinds of stunts that take my breath away, is just an amazing feeling and something I never could have imagined 5 years ago.




I get up. I walk. I fall down. Meanwhile, I keep dancing.
--Rabbi Hillel

Fall down seven times, stand up eight.
--Japanese proverb

There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle.
--Albert Einstein

Disability is not a “brave struggle”¯ or “courage in the face of adversity” ...disability is an art, an ingenious way to live.
--Neil Marcus, artist, 1993

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THE JORDAN RIVER
The significance of the Jordan River begins when Jacob falls asleep beside it and has the dream of the ladder that goes to heaven. Angels descend and ascend while he is dreaming, as though to say that the power of God, the revelation of God was moving into those waters, making the River Jordan a special place of connection with God. It was as though the river provided the sustenance and the strength that God would have for God’s people. And all through history the Jordan River would water the crops, would provide a boundary for the Kingdom of God, a boundary of safety. It is almost as though it is the vein of God’s power that the people of God could tap.

...The people passed through the waters of the Jordan to arrive at the Promised Land, a land that was not alienated from God, not far away from God, but a land that was close to God and God’s love.

And then there was the occasion of Jesus’ baptism. Jesus walked into the river Jordan. The heavens opened, and the Spirit of God poured into our Lord; and from that moment on, our Lord gave his ministry in this world, healing people, caring for people, providing a willingness to die for people. Likewise, if you would like to have the power of God move into your heart, then you walk into the waters of Jordan, because that is when the heavens open and the power of the Spirit of God moves inside you.

From "The Waters of Jordan" by Rev. Samuel G. Alexander



JORDAN'S PALS







Jordan's Montage: Jordan's Life So Far

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Journal

Sunday, October 9, 2011 10:40 PM CDT

It's been FOREVER since I've updated!! Jordan is doing really well and is in second grade now. He is on a soccer team now and was on a baseball team in the spring and summer. He LOVES both sports. He is also still taking drum lessons and is still in that acting program. They just performed "Annie" last week.

Medically, he has been doing really well, too, and we've made some progress on the bowel front. Everything isn't 100erfect but is much better than it was before. We just saw the orthopedic doctor, and Jordan might need surgery on his feet in about a year. We are trying to put that off as long as possible. This past summer he had serial casting done again. I'm not sure how much it did, but we like to try that to avoid surgery as long as possible.

We've had some annoying things with his school but also some progress in some things. Hmm, don't know what else, and I guess this is why I never update!

Update, Monday, October 10, 2011, 3:55 pm
I found out last night that a child of someone in my caudal regression group has died. His name was Sebastian, and he was only 13 months old. This has hit our group really hard--as someone wrote, it hits a little too close to home. Sebastian's grandmother wrote to me when she and her family first learned Sebastian had CRS. They are a wonderful family with fully involved grandparents. If only love were what would keep someone alive. I am just so upset over this and can't imagine what they are going through. The thoughts and prayers of everyone in the "CRS family" are with them.

Read Journal History

Hospital Information:

AI duPont Hospital for Children
Wilmington, Delaware

Links:

E-mail Author: twxee@aol.com

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