Tuesday, December 20, 2011

sleep study

they called today to set up lexi's sleep study and the date for that is january 2nd. that was really fast to get her in but hopefully she cooperates and they get the information they need.


finally got the dates for the appointments at Rileys. we go down on jan.20th for an appointment with the endocrinologist and the opthomologist. then on the 27th we go for a sedated mri and meet with the neurosurgeon. im praying for answers once and for all. hopefully around then we will get the results back from the geneticist. im anxious to find out what they say is wrong since all drs say there is a chromosome issue but they don't know what it is yet. also on Thursday we went to her developmental pediatrician and she wants lexi to have a sleep study since she snores in her sleep. they think her medicine is making her go into a too deep of a sleep. s

Monday, December 12, 2011

long overdue update

sorry for the lack of posts but between being busy and just not knowing what to write puts me behind. this past wednesday me and my mom took lexi down to riley childrens hospital to meet with the neurosurgeon. she said there is definitly a mass near her pituitary gland but she is not sure what it is. but she said it is her job to figure it out and she will. so we have to go back down to meet with an endocrinologist, an eye dr, have another mri done and meet with the neurosurgeon again. she also said that while the radiologist and her was looking at the scans that her brain receptors are not wired right. so what does that mean right now we dont have a clue. we are hoping to get some answers when we get the results from the genetiscist because she said there is definitly something wrong with lexi they are just not really sure what at this point. the good news is she hasnt had any seizures in almost 2 months. bad news is she still isnt talking and shes almost 4 yrs old.