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Justin and his dog Sparky 
Welcome to Justin's webpage. This has been designed so we can keep you updated on Justin's progress. Justin was diagnosed with a Mitochondrial Cytopathy/COX Dificiency in April, 2005. In March of 2008 we found his exact mutations. These mutations gave a more specific diagnosis of Alpers Syndrome; one of the many Mitochondrial diseases. Some of the symptoms he goes through are uncontrolled seizures, chronic constipation, GERD, cyclic vomiting, migraines, he is ataxic, has hypotonia, and we have been struggling with him to gain weight. He got a g-tube in May of 2006 to help with hydration, meds and supplemental feedings.In July of 2007 the G-tube was changed to a G-J tube as his tummy is not digesting properly and we are hoping for better nutrition. In March of 2009 he started on TPN(IV nutrition through a central line in his chest) because his tummy and intestines have slowed down even more. He can no longer walk on his own and usually uses a wheelchair or can scoot or roll across the floor. We pray every day for a cure. Please pray for a cure too. There has been a medical fund set up for Justin and you can go to any Key Bank and donate to the Justin B. Wishing Well Fund. The address to the bank for those who wish to send donations: Justin B. Wishing Well Fund, c/o Key Bank, 2920 HArrison Ave.NW, Olympia, WA 98502. Thank you for helping our family.
 
Journal
Sunday, July 5, 2009 1:21 AM CDT It is actually 11;20 pm on the 4th of July. We are still at Children's and Justin had surgery yesterday. What you say???
See I really need to update more frequently.
So at our Care Conference it was decided to do an upper GI with small bowel follow through. Their idea was to use a G-J tube to do it and I said that they should do it with out putting in a g-j tube and just use the g tube to get a better reading and so they agreed with me. Well from doing that it lead us to surgery. They thought he may have malrotation of his duodenum but when they went in they found a hairpin turn in his duodenum and it was in a serpintine position and it should be more like a c. So they straightened it out and tacked it down moved his small bowel to the right and his colon to the left, took out his appendix since it wouldl be in the wrong place and they put in a new g-J tube. We are hopeful we will be able to do tube feedings again. Yeah!!! That means we may be able to get him off tpn or reduce the amount he needs.
We are here for at least another week or so to get his gut moving again. Pray that this surgery worked.
I am off to go finish my laundry now so I will update later this week!!
Happy 4th!!
Read Journal History
Links: http://www.umdf.org Mitochondrial Disease
http://www.heartbeatsformito.org Webpage dedicated to those with Mitochondrial Disease
http://www.nwmito-research.org mito research guild in seattle
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