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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!!!
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Journal
Friday, September 26, 2008 1:39 PM CDT Well, I guess first of all I should ask you all to say a little prayer for the Little Man. He's taken the stomach bug and has been throwing up for 3 days now. Well, he didn't throw up yesterday, but did late last night. It started Wednesday morning early. He is holding down water and Pedialyte pretty well, so I feel he is staying hydrated. He kept down some mashed potatoes and a little formula yesterday and then threw up again about 1:30 am this morning. It seems like he's lost 10 lbs. in the last 3 days! He looks soooooo skinny!
Please also pray for everyone around Galveston, TX that were effected by the hurricane. It's a long way from us, but lots of people lost all their belongings and property.
Can you all believe we are getting ready for his 5th birthday????? I can not believe he’s getting so old! Our little family party is going to be a western theme this year. “Sheriff Caden” will be an old man!!! I can’t find anything to get him for his birthday so if any of you have any great ideas, please let me know. It’s so hard! You can’t buy him 5 yr. old toys, and the baby toys are........well, just that – baby toys! Plus he has most of the ones he could actually play with, so what is left??? Help, please!!!
We have been super busy with school and cross-country. I can’t believe the 1st six-weeks is almost over. Each year flies by more quickly until it’s hard to tell where one ended and a new one began! They just all run together! The cross-country girls and guys are running really well! They’ll get a real test this weekend when they go to the meet in Lubbock. I was going too, but it looks like I will have to stay home with Caden.
Caden got his KidWalk walker in! It’s gotta have a new headrest for him to use it, but it’s great! It's so cool.....it's bright green and the back wheels light up when they move!! I’ll get some pictures when it’s ready for him to “walk” around in!
I guess that is about all for now. Thanks for checking in on Caden. We really appreciate it and I’m sorry if you often find there is no new update. Sometimes, there just isn’t much to talk about!
Here are a few new pics!
Hugs & Love,
Vicki, Jeremy, & The Old Man
Read Journal History
Hospital Information: Home Sweet Home
2545 Colorado Ave.
San Angelo, TX 76901
Links: http://www.mosaicinfo.org/redwine/ Mosaic Redwine Childcare Center
http://www.umdf.org/ United Mitochondrial Disease Foundation
http://quiltsoflove.com/quilt_2005/caden_LW/caden.html Caden's New Quilt of Love
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