Guest guest Posted January 26, 2004 Report Share Posted January 26, 2004 Hi Kathy, How is Audrey today? Has there been any change. Have been thinking of you and praying for improvement. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2004 Report Share Posted March 30, 2004 Glad to hear Audrey is feeling better and had a few giggles! Geri-Anne and Wyatt, complex I > Tammy, > > First I would like to welcome you to this group, they are absolutely > wonderful, however, I am sorry to hear you have to ride this rollercoaster. Hang on, > because it is going to be the wildest ride of your life. > > My granddaughter, Audrey, 31 mos., has been dx as unspecified mito by Dr. > Cohen in January 2003. She has had many problems since she was a newborn, poor > eater, very floppy, didn't meet her milestones, seizures, severe reflux, G-tube > feed, unable to sit, walk, roll over, talk, ear tubes, fluctuating vision, > many infections, stroke like episodes, but the most beautiful blue eyes and a > smile that will melt your heart. > > Last January my daughter and her husband went to Cleveland with Audrey to see > Dr. Cohen. He confirmed she had mito but didn't know what kind as her > mitochodria were different from he had ever seen before. Anyway, he started her on > the cocktail and within 2-3 days she was having the worst seizures she had > ever had and we almost lost her. Of course we had to stop the cocktail > immediately. Now, she is only on meds for her seizures, meds for her reflux, and > Motrin and Tylenol as needed. As everyone on this list knows, she has had a very > bad winter but for the past few days she is doing great. Many smiles and even > a weak giggle now and then. We have learned to enjoy the today and not think > too far in the future. > > I hope this group of wonderful people can help to comfort you in this journey > you are embarking upon. They are great for whatever reason you might need. > If you need to blow off steam or pick their brains for new answers for some > answers, they are terrific. Hopefully you have a good supportive family as well. > > Again, welcome, > Kathy, grandma to Audrey, 31 mos Quote Link to comment Share on other sites More sharing options...
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