mri/hospital visit

so friday we went to rileys to have lexi's repeat mri. after her mri we went and saw her neurosurgeon who i love. when dr ackerman walked in she looked at lexi and was like you look stoned from the general anesthesia. her mri looked good the mass is still the same size. however while we was there i mentioned that lexi drinks close to 90oz a day. dr ackerman then told me she would be right back and called endocrine. endocrine came down and went over her records and it was decided to admit her to be safe. they did testing for diabetes and that came back fine. the dr said its just in her head and i have to limit her drinking. so tomorrow im calling dr luzzi and asking to switch her medicine because i feel since we ruled out diabetes its her medicine making her drink. so we shall see what goes on with that. i do have to say that rileys is an awesome hospital and i do recommend it to anyone
waiting for her mri

in her room 

playing peek a boo with her nurse

finally asleep after a hard day 

the view from our room.

i need sleep

the past couple nights have been exhausting. Sunday night/Monday morning Lexi decided to get up at midnight and stay up. i'm so not use to not getting barely any sleep. then on Tuesday she decided to only sleep a few hours as well as on Wednesday. then of course today she was up at 5 wanting to play. i believe its her medicine   kicking in because shes also very thirsty, needing to pee alot, and being very whiny. i'm glad that this week was her off week at school because i have no idea how she would make it through school with as little of sleep as shes been getting. i'm gonna say something to the neurosurgeon tomorrow to see what she says. getting kind of nervous for tomorrow but i know it will be ok plus my friend Lauren is going with me so that will be even better. maybe i wont snap on her like i did my mom when my mom took me down last time. lol well ill update you all tomorrow after her mri and neurosurgeon appointment

random things

so i decided to make something new last night for dinner. i made taco salad with doritos which i thought was really good but lexi decided to take one look at it and start acting like it was chocking her. there goes my healthy eating lol. my friend is giving me a gorge forman grill so ill be making more delicious foods. if you have any recipes you would love to share i would love them because i'v been wanting to make different things and not just the same meals over and over again.
secondly how do you get this child to be potty trained. i thought for a while i was getting somewhere but now she thinks its funny to go in her pull up. shes still using the potty but she will intentionally go in her pants as well. so any ideas are welcome.
third thing iv been spring cleaning and getting rid of a bunch of stuff. i think i got rid of almost a trunk full of stuff and sold quit a bit of lexi's baby stuff and clothes that are way to small for her. i have no idea what has gotten into me but man i keep looking for more stuff to get rid of. well i think thats all for today

one week

we are one week away from lexi's mri and i am more nervous than ever. i know that she will be ok and nothing different will show up but it still worries me especially since there is so much going on with her and i have no idea if its her medicine or if theres something else going on. this next week will be hard but i will have to just have faith in god.

when life throughs you lemons make lemonade

so we went to lexi's developmental pediatrician today and she told me to tell her therapist to stop using sign language. i'm very confused because she is using signs really well but her doctor wants her to instead use an i pad which she loaned us today. so i told the speech therapist what she said and she strongly disagrees with the doctor and feels like lexi should sign as well as try to talk. the doctor told me if lexi's therapist doesnt agree then we should find another therapist. however i think her therapist makes a good point at lexi learning sign. also the doctor feels she does have severe apraxia and thats what her therapist things so at least they agree there. also the doctor will be doing some research to see if there is any other genetic testing they can do to see if its causing all of this. finally to top it off her doctor has told me that they must do labs before lexi has her tonsils out otherwise something bad can happen cuz her meds cause her blood to be thin or something so they need to make sure its ok to do surgery plus her billirubin level was high the last time she had blood work done

signing

last week lexi's speech therapist talked to me about signing and we both agreed to start working harder on signing with her since she's still not communicating the best. but i'm not too sure how thats going to go because she seems to not be able to make her fingers do what needs to be done. i'm hoping she can get into signing but i'm not sure. tomorrow we go to see her developmental dr in south bend. hopefully this time she will be there and not make me have a phone conference with her like the last time. plus i have a paper for theraputic horse back riding that i need her to fill out for me. easter was good. she got playdough and some new books which she loves reading. she also got a very beautiful dress to wear and new sandals which made her extremely happy. only 16 days until we go to rileys. ill leave you with some pics from easter.

raising awareness for girls