Wednesday, January 23, 2013

kinda long update

so today lexi had her follow up mri. the neurosurgeon said it looks the same and that she will see her in one year and if its still the same size then we will not worry about it again. yay so happy to be able to move on from that. the neurosurgeon wasn't happy that they didnt get us into neurogenetics so now we have an appointment on feb 22nd with regular genetics and if we dont see the doctor that the neurosurgeon wants us to see then we will go to the appointment on march 25th. so hopefully we will get some answers about whats going on with her. while we was there i got the call from the gi's nurse and they scheduled the upper gi for friday at 7:45. and she said that for the g tube we will have to be there at 8am on feb 4th. plus on top of everything else lexi has therapy on friday and a dentist appointment. i also need to call at some point and make a eye doctor appointment for her and a hearing test just to make sure those are still good. 

Tuesday, January 22, 2013

g tube

so today i went to lexi's developmental peds appointment and told her how we are still fighting to get lexi to take her meds. her dr then decided enough is enough and got us in to see the gastro interologist today. they decided since we have tried every way to get her to take her meds its time to just place a g tube. so on feb 4th we will have the g tube placed. im still waiting for them to call with a day and time to do a upper gi on lexi before the g tube placement. i also need to schedule a eye dr appointment along with a hearing test as well for lexi. lots of appointments but it all needs to be done. pray for us as we go to rileys tomorrow for lexis mri and appointment with the neuro surgeon. i know there isnt changes but still praying we make it down safely

Friday, January 18, 2013

busy week ahead of us

Today is a day of doing laundry and just relaxing. Surprisingly Lexi didn't have therapy today because they had some kind of meeting so all therapies were cancelled. So for the first time in a very long time me and Lexi are just relaxing today. Its nice since next week is going to be very busy. I work Monday then Tuesday Lexi has school and has an appointment with her developmental doctor. Then on Wednesday we have to travel down to Riley's for an mri and to see her neurosurgeon. Then Thursday is back to school for Lexi and work for me. Friday is a day of therapy and a dentist appointment for Lexi as well. so next week is super busy. This week has gone good though I got her progress report and she is progressing very well. Speech however is very difficult for her. They say she understands more than she can say which i believe is very true. Still no word on the results of the eeg last week but we will probably get the results the 29th when we go to the follow up appointment with her neurologist. Another thing new this week is she refuses to go to sleep now until very late. last night it was after 1030 and she was up early. Not sure whats going on with the sleeping schedule

Thursday, January 10, 2013

update on hospital visit

i honestly have to say i love parkview regional medical center. they are so friendly and the nurses actually care. i was told by the nurse this morning that they wanted to keep lexi because she was a quiet patient and they like the quiet patients to stay along time lol. during the stay she got a barbie, a stuff animal and a book. the book came from an organization called if you have time you should check out the website. very cool that they provide a book to children for free when they are admitted. i got to see lexis neurologist and not the nurse practitioner and she said because lexi had a seizure in september or october she must still be on meds so depending on the results from the video eeg they will decide what to do. i can not say enough about this hospital and the nurses. i mean the nurses and even the people who brought up the food and the cleaning lady was so very sweet. they treated lexi like a person and not like a child who doesnt matter. now i believe lexi has an ear infection because shes been crying in pain and saying her ears hurt. poor girl cant catch a break thats for sure.

Wednesday, January 9, 2013


we are admitted and currently having the eeg done. Lexi fought like I knew she would but they got the leads on so hopefully they will catch something. The nurse practitioner came by and said once again that there is nothing they can do about her not taking her medicine but they are hoping they can catch something on the eeg. i hope so as well since i really don't want this to be a pointless admission. I do have to say I do like this hospital its very nice and they gave lexi an ariel barbie so she is increasing her barbie collection here latey. and they also gave her a stuff animal so that was nice of them. i can tell the nurses her cares for each patient because they treat lexi like a person and not like its just part of their job. my view from the room sucks though lol. its of the roof so not much to see lol. well that is all i guess. im bored but lexi is doing good and not trying to escape lol

Monday, January 7, 2013

well now lexi is sick

well now lexi is sick with a 101.5 fever. shes coughing and has a runny nose like as well. what ever this is hurts so bad and i cant stop coughing to where im not gagging from coughing so bad. i think it has moved into bronchitis or something. this crap needs to go away because if i feel this bad still i can only imagine what lexi feels like. but i guess everyone has it and if they dont have this one then they have the other kind. im so over winter already. it seems like everyone is sick now and its not going away. another thing is on wednesday lexi goes to the hospital to be admitted for her 24 hour video eeg which im hoping will catch something and not be a waste of time.

Friday, January 4, 2013


of course wouldn't you know that when I tell people I don't get sick I actually jinx myself. I've been sick now almost 4 days but 2 days with high fevers. luckily i went to the doctor and was diagnosed with the flu and started on tamiflu so hopefully i start feeling better soon because i feel like crap to say it nicely. i just hope and pray lexi dont get it because it might not be good for her.