Pseudo Tumor is Back

38 June 07, 2006 at 12:45 PM EDT
Well we have had alot of testing done in the last 2 days and so far everything is coming back clear and no signs of blockage. Which is really good. Simon had another spinal tap last night and is on diamox now. We hope this does the trick. We have no real answers beside he might be sensitive to steroids so we hope and pray it doesn't come back. His head is still bulging on top so I'm not sure why that is happening and they say it may take a day or two to go down. In the meantime he had an upper gi scan today and we are working on getting his G-tube in this visit so we don't have to go back. The girls and I were able to have breakfast out this morning with Grandpa and Grandma Terri and we are heading to the hospital now so the girls can see Simon as they miss him alot. We posted some new photos so check them out. They are when Simon had an appetite and it is good to see him wanting to eat, gives me hope for that to happen again. The photo of all of us is my newest niece, Olivia, and its a wonderful photo of her. Please continue to pray for better vntrs and that we don't have to go through this all again. Thank you and God Bless. Tracy and David

37 June 06, 2006 at 10:25 AM EDT
Seems Simon was missing his nurses too much on 4 West and he needed to get his flirting time in so we are back at Childrens this morning. He woke up yesterday with a swollen bump on his head and vomitting so I called and they wanted to get an MRI and CT scan with dye and check his spine as well for blockage. We are still waiting for the results. They did this last night and he was in recovery until almost 10:30 pm. He slept pretty well but is irritable and not himself today. They most likely will do another LP (spinal tap) to relieve the pressure and hopefully just need to add meds to keep it at bay. Its very scary but still, Simon smiles. He is an amazing, tough kid. Tougher than I. Dave will be coming up here tonight as I have an appointment for myself and we are hoping to get Simon well and out of here in a day or two. VNTRS are getting drawn today and I talked to Dr. Uzell from Texas last night as she was flying back to Washington, shes such a jet setter, and she assures me this pseudo tumor has nothing to do with NEMO and nothing to do with the transplant so we are not sure still if Marriana will have to be reharvested but its looking like Simon will need a boost, so that stinks for her. Please keep praying, God is listening, its just taking time and we have to get through this. Please keep us in mind for your daily prayer. need a mocha frappacino (I know I never used to drink coffee, now I"m hooked on these things) Take care, Love Tracy and David