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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. Some of the symptoms he goes through are uncontrolled seizures, chronic constipation, GERD, cyclic vomiting, migraines, he is severly 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. He can no longer walk on his own and usually uses a wheelchair or crawls. 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, August 17, 2008 1:38 PM CDT Okay I just realized it has been a while since I have updated! Life has been very crazy here. We have been traveling fools lately!LOL!!
Last weekend was our big campout up at Lake Cushman. I went up Thursday and Justin came up Friday. By Saturday it was pouring down rain so I sent him back home so I wouldn't stress his body out since I knew we were going on a road trip and had one day of all day doctor appointments the following week.
Last Monday he had PT and we are really working on stretching him out. Then Tuesday was our big day we had to be in Seattle by 9am for a renal ultrasound and he was great for it! He just layed there and let them take the pictures! Then we had breakfast and were off to our Neuro/Mito doc appointment! We are still continuing to wean off the Topamax!! Then we had a break and got a snack and then were of fto our last appointment with Nephrology! This was the most concerning appointmant of the day. We dicussed his ultrasound from the morning and his bladder was so full it was back pressuring into his ureters and that means he is at a higher risk for infections. Nothing we can do about this as he is not toilet trained and so timed voiding is not possible. We are also concerned about his RTA and wether or not coming off the Topamax will affect this. I have to get a urine sample into the lab this week and we will see what he is peeing out! Then it was off to the lab for a quick blood draw and on our way home!
Tuesday night we headed out on a 7 hour car ride to see my sister, my niece and two nephews! We got in to her house at 3:30am! We had an awesome visit and even got to watch my nephew Alec's last soccer game! What I discovered is I would be the embarassing soccer mom on the side line cheering and yelling at them to run the other kids over just to make a goal!!LOL!!! My nephew was thinking of not claiming me as his aunt!!LOL!!! Oh well it was exciting! We came home Friday night and got to sleep in on Saturday before we headed up to the MIto Family Picnic!! Which in itself was a very fun and wet experience! Justin soaked himself with water balloons! It was more fun for him to pop them on himself then to throw them at me!! I am happy about that!!!
Today is a fun filled day of unpacking and catch up on laundry and cleaning! We are getting ready for another weekend of camping over labor day weekend!
I hope you all are having a fun filled summer and and are enjoying life as it was meant to be! Love to all of you!!!!
Karen
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