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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
Tuesday, July 22, 2008 5:57 PM CDT Wow, it's been too long since I've updated, huh??? This summer has been FAST and FURIOUS! June was basically full of basketball stuff......camps and summer league. Then all of a sudden it was July, which has been full of traveling.
Caden didn't get to go to the WTRC summer camp, but we'll try again next year! He's had a blast this summer and seems to love swimming more than ever! His babysitter/girlfriend, Mackenzie has a pool, so she's been taking him swimming this summer a lot. She's sooooo amazing and we thank God everyday that she loves Caden sooooo much!
July started out with our annual 4th of July trip to my sister's house. She lives on the lake, plus she has a pool & hot tub, so there are lots of activities at her house!! It was a fun trip and the only tragic event was that I jumped in the lake to water ski without realizing I had my good shades on......so they rest at the bottom of the lake now!
The week after the 4th, we were off to Arlington for Jermy's coaching school. Caden got to stay with his Mamaw & Papaw (my parents) while we were gone. It was a good trip, but Caden got a stomach bug while we were gone and threw up all one day. It doesn't make for a very relaxing trip when you know your kiddo is at home sick!
We finally got to stay home for about a week after that, and then we were off to the annual lake trip with all Jeremy college buddies and their wives. This time Caden stayed here at our house and his Mimi & Pops (Jeremy's dad and step-mom) came here from NM to keep him. Our time at the lake was a blast! Caden also had a blast with his grandparents!!! He ran a slight fever on Saturday, but not too much to worry about.
Now we are home until Sunday, when we will be off to Levelland for the girls basketball team camp, and from there, we will go to NM for a few days with Jeremy's family.
Caden has had a really good summer! He hasn't been too sick (knock on wood). He has had some congestion that has been hanging on for a couple of months, and he's been on nose spray, Claritin, and inhaled steroids to fight it. It seems a little better than it was earlier in the summer. He isn't doing anything new and exciting to talk about right now, but we're waiting everyday! He has been approved for a walker that will have enough support for him and hopefully it will give him a little freedom. We are also in the process of getting him a new wheelchair. The first one we picked out wasn't approved because it wasn't techinally called a "wheelchair", but this new one we are trying for should be approved!
He's still his same ole crazy kid who loves playing in the floor with all his toys and going outside to swing or slide. He's still been going to daycare most of the week so he can see his buddies. They are so cute when he gets there! They all scream out "Baby Caden" when we take him through the door. It cracks me up because he's the same age as them, but they still think he's a baby.....I guess because Veronica or Prissy have to hold him still. Still, they are always sooooo excited to see him! One day, I went to pick him up and 2 of the girls in his class were standing by his chair and each one had one of Caden's hands and they were doing Patty-Cake with him. He loved it!
We are very excited that he will be with the same teacher (Ms. Liz) that he had last year. She is amazing, so it's really important that he will have her for a full year! He starts back the same day we start....Aug. 25. We hope he has his new chair to start school in!! He'll be excited to get to ride the bus again! I hope we have the same drivers as last year because they were soooo sweet!
We are a little concerned that we can't find Caden's formula very easily anymore. See, he still drinks about 3 bottles a day that are liquid formula mixed with 2 scoops of dry formula for added calories. This is where ha gets most of his calories (even though he's sooooo skinny!). I think Similac is discontinuing the type Caden drinks. He drinks the plain ole Similac with Iron (not Advance) because that is the type that made him throw up the least when he was a baby. He's been drinking it for 4 years! The only thing we are hoping for is that he's old enough that we can switch to something else and it won't upset his tummy too much. We are buying up all we can find while we can still get it!
Tomorrow starts the Fill the Boot campaign for San Angelo, so everyone get out your change and find a firefighter at an intersection in town!
I guess that is about all for now. Sorry it's taken me so long to update. I hope you're all having a fun summer!
Hugs & Love,
Vicki, Jeremy, & Little 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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