Sunday, January 29, 2012
well we went down to rileys for a mri on friday and to meet with the neurosurgeon. the neurosurgeon looked at the mri and said its one of two things. the mass could be a lipoma or a hamartoma. the lipoma is just a fatty tumor and the hamartoma is around the hypothalamus. we believe it could be the hamartoma because it would explain the seizures, the behavior problems and the developmental delays. but we wont know what it is for a while because they have to watch it to see if it grows or if she starts having gelastic seizures. they cant take it out because if they was to remove it it could cause more problems than what its causing now. so for now we are just waiting and seeing what happens. let me tell you its hard to just wait and see and not know what is going on with your child. i want answers but they cant give me any answers
Friday, January 20, 2012
we went to rileys today and at the endocrine dr they did blood work and said that unless anything comes up with her blood work then they will see her back in 9 months to make sure shes growing fine. the eye dr said her eyes look good but she wants to see her back in 6 weeks unless the neurosurgeon decides to remove the mass and then at that point the eye dr wants to see her back in 6 weeks after the surgery. so for now its a wait and see kind of thing like everything else. also i got the call and we have to be down at rileys next friday for a 930 check in and a 11:00 mri scan. i really hope this mri will give the dr alot of info and they will be able to tell what it is better.
Wednesday, January 18, 2012
tomorrow we leave for Indy. we decided to go down a day early so we can have a little fun before her appointments on Friday at Riley's. Friday she goes to Riley to meet with endocrinology and ophthalmology to check and make sure everything is OK. i'm hoping eventually the doctors will figure out why shes having chronic diarrhea. i know it cant be all that good for her to constantly having the craps. i dont think we will find out anything on friday but we will have a somewhat fun day.
Saturday, January 7, 2012
today has been a hard day for me. autism really stinks, i want lexi to be able to talk and play like all the other kids. i know god made her unique and i need to just deal with it but its hard. especially when everyone around me still says she doesnt have autism even though 2 different doctors have diagnosed her with it. i mean come on.and then the staring when we go out is bad. i just want to be like stop starring at my child she has feelings just because she cant talk and has a meltdown when she is frusterated dont mean you can sit there and stare at her. how would you like it if i starred at you. probably wouldnt like it. and then there is the potty training. i really pray she will be potty trained soon. and will start talking this year. i want so bad to make life easier for her but i cant and it sucks
Friday, January 6, 2012
we did the sleep study and omg that was an experience i'll never forget. she didn't like the tube they put in her nose so she kept waking up screaming. i felt so bad and wanted to pull it off and say i'm done stop hurting my baby. but i didn't because i need to make sure she has no issues sleeping. next week is kinda a calm week with ot, and speech and maybe pt if i can reschedule it to next week instead of the 19th. shes making progress with pt but not with speech.