PLEASE PRAY FOR TRENTON DUCKETT! He is a local little now 4 yr old boy that has been missing since August 27th,2006.Please pray for his safe return. Click on the banner above for more information and please pass this Amber Alert along.....
Welcome to our Joshua's Web Page. This page has been provided to keep family and friends updated about Joshua, his health, his milestones, and our effort to find answers about his condition. In June 2006 Joshua was diagnosed with Mitochondrial Encephalomyopathy and has defects in Complex 1 and Complex 3. This is the best brief description that I have come across so far to help you understand his disease.
"Mitochondrial diseases result from failures of the mitochondria, specialized compartments present in every cell of the body except red blood cells. Mitochondria are responsible for creating more than 90% of the energy needed by the body to sustain life and support growth. When they fail, less and less energy is generated within the cell. Cell injury and even cell death follow. If this process is repeated throughout the body, whole systems begin to fail, and the life of the person in whom this is happening is severely compromised. The disease primarily affects children, but adult onset is becoming more and more common.
Diseases of the mitochondria appear to cause the most damage to cells of the brain, heart, liver, skeletal muscles, kidney and the endocrine and respiratory systems."taken from umdf.org website
He has secondary SCADH, a fatty oxidation disorder, or FOD, there are links below for more information on his conditions. Joshua has been in the hospital numerous times in his short life. His symptoms were present at birth. Hypotonia, swallowing difficulties, temperature regulation problems, feeding problems, breathing problems, heartrate problems, chronic diarhhea, excessive urine,chronic yeast (thrush and intestinal yeast),and Erb's palsy. He came home and has chronic lung disease, and has been diagnosed with reflux,chronic aspiration, delayed gastric emptying,impaired gut motility,chronic lactic acidosis,and severe tracheomalacia. He sweats alot and is prone to dehydration if he is outside for as little as five minutes which has at times led to seizures that induce retching and feeding intolerance.He has been diagnosed with macrocephaly,high blood pressure,asthma,ventricularmegaly,hepatomegaly, and hydrocephalus,pancreatic insufficiency,autonomic dysfunction, seizures, acidic urine, polyuria,moderate severe obstructive apnea,and autonomic dysfunction.He is g tube fed due to reflux and silent aspiration.Due to all the scar tissue he has in his lungs and his areas in his lungs that are still collapsed along with him being ineligible for a lung transplant if he ever needs one down the road he will probably always have to be fed through his feeding tube,when his airway noises are clear he does on occasion have a small amount of goldfish or cheetos which he started being able to have this summer. He has had liver involvement, and gall bladder and ductal involvement during his metabolic crisis'.His kidneys are also monitored closely due to his inability to maintain necessary protein levels.In April of 2006 Joshua had several surgical procedures done all at once. He had tubes placed in his ears, a bronchoscopy, a lavage, nissenfundupflication, gtube placed, pyloroplasty, inguinal hernia repair, and an umbilical hernia repair.He currently is 4yrs old, and is developmetally delayed in some areas which tends to wax and wane according to his health.His most frequent regressions when he is ill are in his speech and fine motor skills. He also has some sensory integration issues as well. He is talking now and is still working with the speech therapist to become understandible, we can only understand about 50-60 percent of what he says at the moment.He is really making strides with his speech therapist and is getting very good at attempting to say almost anything, though not all can be understood. He is walking and running on his good days, boy can he move! Joshua has regressed mentally and physically when he is stressed or ill but in time seemingly regains most of his lost abilities. There have been some areas but we are in hopes that his therapies will resolve them.He receives therapy several hours a week. He is also receiving horseback therapy which has truly been amazing!But most of all he is the sweetest , most adorable little man you'll ever meet. He has earned his name and is our little warrior.
A very BIG thank you to Troy Christian School in Troy, Ohio. Our family would like to thank you for all your love , prayers, and encouragement shown towards our family. Thank you so much!!
This is my favorite picture! Joshua was checking out some love birds in the hospital lobby.
This song has truly come to touch our hearts as God continues to be so faithful to our family and answered prayers have been abundant.
Joshua in his new hat, boy does he love it! I just love this picture, even Josh takes time to smell the flowers! Mommy and Joshua among the tulips in the Public Gardens, Joshua is making one of his famous silly faces! :)
Journal
Monday, September 29, 2008 12:35 AM CDT
We pray as you read this update that all is well with you and your families and want to thank you for stopping in to check on Joshua. Since our last update Joshua has been in the hospital three more times.All of which seem to start with his heat intolerance which leads to seizures and him remaining post-ictal (post seizure state) for long periods of time, when he wakes he has been having retching and feeding intolerance which has lead us to take him into the hospital. They usually have to put him on just fluids and iv's and do bowel rest and he usually comes home on continuous feeds with decreased formula and calorie intake and increased pedialyte and we slowly adjust it back towards normal as his tummy allows. He has pretty much no telerance for heat at all anymore and we go to great lengths to keep him cool so that the girls can still do their sports. He is attending preschool and i have been attending with him to do his meds and watch him at play, he is going to be released soon to the nurse and will be able to go for a few hours each day. He loves school and every one is his "best friend". We are having insurance issues right now and having dificulty getting Joshua's testing, labs , and specialist follow ups right now and would ask for prayer that God will make a way for him to be seen and monitored the way that he needs to be.We very much appreciate your prayers in this area. Joshua also needs prayer for his belly distention which is frequently causing him discomfort, and his weight gain as well.(he has been swelling alot and at times it also makes him uncomfortable as well)....Joshua is turning out to be every bit a boy-lol- and is really keeping us busy...he is extremely active and loves to get into every thing and rough house with his sisters-lol!!! he also is enjoying his x-box and blows everyone away in the games :) He is truly a blessing and brings us much joy and keeps us on our toes.... we thank you so much for checking in and we will be posting some new pics and trying to update his info as time allows... God bless and we love you all!!!
http://quiltsoflove.com/quilt_2005/joshua_dk/joshua_dk.html Come and see Joshua's quilt of love, made just for him by some very special ladies! http://fodsupport.org Contains information of SCADH , Joshua's secondary diagnosis. http://umdf.org United Mitochondrial Disease Foundation-Gives some insight about what we are dealing with and has descriptions of the other condition they are looking at for Joshua- Electron Transport Chain ( respiratory chain)
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