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.

dates

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

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.

well now

so after a second mri it turns out it is still a tumor but its a fatty tumor and its most likely not causing her problems so they most likely wont take it out. but the neurologist wants me to take her down to rileys anyways just to meet with the neurosurgeon and get his opinion. also while at the neurologist she sad her eeg came back abnormal so they started her on keppra and will also do another eeg in a couple weeks. they also scheduled an appointment with the genetisitst to see if maybe there is something wrong in lexi's chromosomes. i kinda hope maybe they can shine some light into why lexi is the way she is.

mri results are in

lexi had her mri today and they found a mass in her brain, most likely a tumor. tomorrow we are going back to have a contrast mri and then monday we are having blood work done and most likely be sent to riley childrens hospital soon after

hospital pics

this is when they did the eeg on 10/7

 this is when she was in the er on 10/6 waiting to be admitted

discharged

on Thursday the 6Th i took lexi to the park with her father and my friend maryia. we was walking around and lexi was a little bit behind me when all of a sudden i heard her fall flat on her face. i picked her up and realized right away that she was seizing. so right away i layed her down and yelled shes seizing and a guy at the park called 911 for me. they came and got her and took us to the hospital. once at the hospital we figured out that she started seizing before she fell and we knew that because she didn't try to catch herself. her Dr admitted her right away since she didn't have any reason to have a seizure. they did blood work, and an EEG. they also started her on kepra so she wont have anymore seizures. i have to schedule a MRI under general anesthesia and she has to see a neurologist in fort Wayne plus have a follow up appointment with her pediatrian this week.