Marilyn’s Musings Weblog

A Minister’s Wife Just Rambling

Tanner my son has Beckwith-Weidemann Syndrome October 29, 2008

Filed under: Uncategorized — marilyn4him @ 3:19 am
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I just wanted to share a little about Tanner’s story. I won’t go into all the details you can check his early life story out on the Beckwith-Weidemann site http://www.geocities.com/beckwith_wiedemann/tanner.html

Tanner was in NICU at birth and had many problems. Even while I was pregnant they had discovered that something was wrong with his kidneys. Needless to say his first glimpse of life was a struggle. He was very sick and spent several days in the NICU. This was not a new experience for me since Cody my middle son had spent the first week of his life in the same NICU and was transported by the same Angel III ambulance and the same crew, should I say deja vu. The only difference was that when Cody came home he did not have any ongoing health issues to deal with.

Tanner on the other hand spent several days in and out of the hospital over the next few years. We saw many specialist trying to find out what was wrong with him. Final when he was 3 we were told he had Beckwith-Weidemann Syndrome he also had Hemi-Hypertropy which meant one side of his body was bigger than the other. Now we know what to call his disorder. We try to learn all we can about it. We get involved with National Institute of Health’s research program. We even met Dr. Beckwith himself.

Tanner had many visits to specialist. He saw Nephrologists, Orthopedic Surgeons, Pediatricians, Lung Specialist, ENT’s, Oral Surgeons , Orthodontist, Chiropractor, and now we add Physical Therapy. You can read about his oral problems on my blog about the Orthodontist.

The main concern through the years was for his chance to develop wilms tumors. He had pre-cancerous tumors called Nephroblaustoma-Tossis. He had to have ultra sounds and CT’s every 3 months for several years to check for cancer. It was always so nerve wracking everytime we had another appointment to see if it was cancer. Thank the Lord so far it has not been. We still go once a year to make sure he is cancer free.

He has had many health problems through the years with his lungs, he was hospitalized over 8 times because of breathing problems, he has had his tonsils and adenoids out this was a big help with his breathing problems. He even went code blue one time when he was 1 year old. We spent many a night under a croup tent.  He had a breathing machine for years. He finally outgrew most of these problems by the time he was 5.

One of the main struggles has been in school with learning disabilities. Tanner has processing problems. Beckwith is considered to be a cousin to downs. He has struggled really hard in school. He had so much trouble with kids picking on him and not fitting in that we have homeschooled him for most of his life. He thrives in homeschool. He is a happy and full of life child. He loves NASCAR, Diesel trucks, tractors, and most things with a motor. He loves people and loves to talk. He usually has a big smile on his face.

He is now 16 and we have had a new problem. He is 6’4″ tall. He grew so fast that his bones grew faster than his muscles which has caused him to have so tight of muscles that he is slumped over and can not even bend his muscles. He can not even touch his knees not to even think about his toes. He can not turn his neck very much at all. So is what lead me to blog tonight. We have been taking him to AQUA Therapy and the physical therapist thinks she will be able to stretch his muscles to where he can get back to normal. He loves going to AQUA Therapy. He goes 3 days a week. Here are some pictures I took tonight while he was working out.

 

I believe God has great things in store for Tanner. He is such a joy and a blessing. He loves the Lord and can’t wait for Jesus to come back. Wherever he goes he brings sunshine and laughter.

 

No, dear brothers and sisters, I have not achieved it, but I focus on this one thing: Forgetting the past and looking forward to what lies ahead …

~ Philippians 3:13, NLT

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One Response to “Tanner my son has Beckwith-Weidemann Syndrome”

  1. wanda Says:

    So cool! Aqua therapy…..that’s awesome!

    Now Tanner…..no splashing all the water out with those flippers!

    I know how you like to pretend those things are feet…..but I know you’re part duck! Those dudes are flippers!

    Great post…..what a neat way to chronical a life well lived!
    You’ve been the best parents….and Tanner’s proof of it.
    I love him!

    I heart you too!


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