Translate This Page To: Spanish German French Italian Portuguese Norwegian Brought to you From FreeTranslation.com Gracie S. Two years post transplant. Family Portrait Article on Gracie titled "Mary's Baby" Current Page Page One Page Two Page Three UPDATE: 8-1-10 Gracie has been doing really well. She was turned down for the feeding program in Maryland. The investigational program she has been in that studies the disorder that caused her to need her transplant, has been transfered to Maryland from Nashville. She will be starting kindergarten in one week, she will go to a new school and have a new assistant, so we pray all goes well with that. I have also requested a handicap swing because currently there is nothing on the playground for handicap kids which I find very sad. God bless you all! UPDATE: 6-4-10 Gracie saw her specialist at Vanderbilt May 28th, everything went well. She has actually gained several pounds! All her labs that have already came back look good. They also did an ultrasound to make sure her liver and everything looks good and it did! The only thing we do have going on right now that needs prayers lifted up is she has what looks like the begining of the skin lesions that put her in the hospital a year ago, we have already started treating her for it so pray it gets better because when she was hospitalized last year over it the dermatolagists at Vanderbilt said it was the worst case of it they had ever saw! God bless each and everyone of you! We love you all! UPDATE: 4-15-10 The 2010 Help Baby Gracie ride will be Saturday May 8th at Loudon High School, in Loudon,TN. Registration is at 10am with start ride time at noon. Please NO alcohol! Contact info is Paul (865)389-1905 and/or Jason (865)250-3496. UPDATE: 3-14-10 Gracie has been doing fairly well. We're in the process of trying to get her approved for an intense feeding program at John Hopkins up in Maryland. We already know the evaluation appt would be out of pocket for sure and it's over $2000! The program has had a very big success rate so it would all be so worth it despite the family hardship it would cause. If she gets accepted into the program it has a waiting list, then once started it lasts for 6-8 weeks! Please pray if this all works out that Gracie would benefit from this and be successful so she would begin to eat her food, not just put it in her mouth and chew but to also swallow and to also begin to drink. Life would be so great if someday we could get rid of her feeding tube once and for all! We've been in the process of trying to get Gracie into a feeding program at John Hopkins in Maryland, but it's a long process, even if she's accepted theres a waiting list. The big question will be if insurance will pay for it. Lift her up in prayer that things will work out for Gracie and that someday she will eat orally, and therefor can someday survive without the feeding tube. UPDATE: 1-12-10 Gracie has an appt. at Vanderbilt on Friday Jan. 15th. It's a liver follow up appt. with her liver Dr. there. She's doing well, although she seems as though she may be starting to come down with a cold or something cause she's starting to cough, hopefully it will be a simple cold and over in a few days. Pray for a good report from the doctor as well as safe travels to and from Nashville. This family picture was taken Dec. 2009 UPDATE: 1-5-10 This is a picture taken of Gracie in Dec. She's 5 now! 4.5 years Added: 10-29-04 Gracie is 4 weeks of age. Child's condition:Citrullinemia (urea cycle disorder) Comments: Please always pray for her, as there is no cure. If you would like to add a page for your child, click on "Add A Child" below. Please be aware that once a child's page is added to this website the information becomes public. Please keep this in mind when posting information. 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