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Welcome to Caden's Web Page. Caden has a MITOCHONDRIAL disorder with defects in Complex I & IV. He went through some extensive testing to find out his diagnosis. This page has been provided to keep family and friends updated about Caden and his progress.
Children are living jewels dropped unsustained from heaven.
~Robert Pollok
Caden Lane Williams
October 8, 2003 ~ 1:50 pm
8 lbs. 3 oz. ~ 21 in. long
For those of you that do not know us or Caden personally, I would like to take a minute to tell you more about Caden. Caden started his life out with some trouble. After he was born, he had trouble with low blood sugar and jaundice. We were kept in the hospital for 6 days and were finally allowed to go home. The first 2 days at home were pretty difficult and Caden began to projectile vomit the soy formula they had put him on to help with his spitting up. After those 2 days, we were re-admitted into the hospital because Caden's jaundice was coming back and he was dehydrated from throwing up so much. On day 12 of his life, he and I were flown to Cook Children's Hospital in Ft. Worth to find the cause of his throwing up. Jeremy had to drive up to join us. I think he set a record time of getting to Ft. Worth!! After many tests, 3 medicines, and the diagnosis of severe GERD, gastroesophagial reflux disorder, we finally came home to stay. Caden was almost 3 weeks old. Besides the need for SEVERAL burp cloths every time Caden ate and a very fussy baby, everything went pretty smoothly.
At the age of 3 months, Jeremy and I started to notice that Caden wasn't doing the things other babies his age were doing. Mainly, we noticed that he wasn't tracking objects with his eyes and his right eye seemed to drift out a little from midline and he couldn't hold his head up for more than a few seconds. At that point, we were sent to our first observation at West TX Rehab Center and we were sent to our first ophthalmologist appointment. That was the beginning of many doctors, tests, and therapies. Caden was diagnosed at WTRC with hypotonia ~ low muscle tone~ and this was the cause for him not being able to hold his head up. At 3 months of age, he was at about a 1 month development. We began physical therapy 2 times a week. The ophthalmologist chalked Caden's vision delays up to lack of development also and wanted to evaluate him a few times to see if it got better. Thank goodness it has! We are working on getting an appointment with a new ophthalmologist to evaluate Caden's vision. More on that to come.
We have seen 18+ doctors and specialists including an ophthalmologist, a geneticist, 4 neurologists, a metabolicist, a gastroenterologist, and we have a physical therapist, an occupational therapist, a speech therapist, 2 vision instructors, and an ECI specialist. We will soon be seeing a new ophthalmologist and a cardiologist. Caden has had an EGD and ph probe for his reflux, two EEGs, a CT scan, two MRIs, an MRS, 2 spinal taps, a head sonogram, a swallow study, 2 UGIs, an ERG, a muscla biopsy, many hearing tests, MANY blood and urine tests, and will soon have an EMG. No reflexes can be found in Caden's arms or legs. We returned from our trip to Atlanta, GA for Caden's 2nd spinal tap and his muscle biopsy in March. According to the muscle biopsy, everything muscle and skin wise is normal, but 1 enzyme test was abnormal. Every other test, except the hearing tests, that any of these doctors and specialists have done have come back NORMAL. Our first neurologist thinks Caden has a MITOCHONDRIAL DISORDER. But, every test he did to tell him that it was mitochondrial came back normal. There are no cures for mito disorders. We have been searching for another opinion. Our latest doctor, Dr. John Shoffner, in Atlanta seems to think Caden probably indeed has a mitochondrial disorder, a mitochondrial encephalomyopathy with defects in complex I & IV, in fact. Encephalo means "of the brain" and myopathy means "of the muscle." He is basing this diagnosis on the single abnormal enzyme test. Dr. Shoffner had told us that Caden didn't have anything degenerative, but as far as I know ALL mitochondrial disorders are progressive and degenerative. Caden has started taking a combination of vitamins and supplements called the "mito cocktail" that will hopefully keep him pretty healthy and slow the progression of the disease.
As of now, Caden is 4 years old! We started this journey over 3.5 years ago and finally have an answer. Caden still can't hold his head up for very long, can't sit up, crawl, stand, or walk, but we all hold out hope that one day he will be able to do some of these things. He is getting stronger everyday and is making slow progress. Caden has never regressed, or lost any skills. He has the sweetest smile and laugh and babbles all the time. He has decided he can throw temper tantrums to get what he wants......as if he doesn't get anything he wants anyway! He is the ONLY grandchild on my side and the only baby on Jeremy's side! He gets his share of spoiling!! He is eating more and better. He is becoming more interactive with us and is so much happier! He has the sweetest personality and is the best kid ever! He is the LIGHT OF OUR LIVES!
One Day at a Time
One day at a time sweet Jesus
That's all I'm asking of you
Lord give me the strength to do everyday
what I have to do,
Yesterday's gone sweet Jesus
and tomorrow may never be mine...
Lord help me today, show me the way
ONE DAT AT A TIME
by Marijohn Wilkins
For those of you who have asked "How can I help?" First of all, we would appreciate your prayers for Caden and our family. Please pray for Caden's healing and God's wisdom for his doctors and specialists so that we may one day have an answer. Secondly, a fund has been set up for Caden to help defray some of his medical expenses. This fund is listed as:
Caden Williams Fund
First State Bank of Paint Rock
402 Smith Blvd.
San Angelo, TX 76905
Please do not feel required to make a donation.......your prayers will be enough! But if you do feel compelled to make a donation, please know that it is very appreciated.
Photos by Morrill Photography ~ Hobbs, New Mexico
 
*HUGS* TOTAL!
give Cadenlane more *HUGS*
Get hugs of your own
Eli's Angels
a non-profit organization for children with mitochondrial or metabolic disorders
Caden is an Eli's Angel!!!
Please sign the guestbook and let us know you were here!!
  
Journal
Monday, April 13, 2009 1:52 PM CDT
Caden has the new version of this classic CaringBridge page. Please go to his new site:
www.caringbridge.org/visit/cadenwilliams
for all the latest news about our Little Man!
There will no longer be updates on this webpage. Thanks for keeping up with Caden, and sorry I fell behind on the updates!
Hugs & Love,
Vicki
Read Journal History
Hospital Information: Home Sweet Home
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