Wednesday, July 5, 2017

a month has gone by oh my

so last friday we went to riley childrens hospital to meet with the neurosurgeon. she didnt say no completely to the vns but she said because of what happened she wont put it in yet. she wants us to see the epileptologist and have the video eeg the 14th and see if her seizures are still coming from the right side. if they are coming from the right side then lexi might be a candidate for epilepsy surgery. but her seizures must come from the right side. if they arent then there is no chance for epilepsy surgery. she agreed october was to far to wait to see the epileptologist so we went to the scheduling desk and they emailed the epileptologist and she agreed to see lexi this friday (7th). im hoping she will agree to wean her off the banzel and maybe try different meds but we will have to wait and see what she thinks. im hoping she will take over care since they have more things they can do at this hospital than at the one her current neuro is at.

Saturday, June 3, 2017

school is over

last friday was the last day of school which really stinks for kids like lexi. lexi thrives off of going to school so summer break is always hard. but she made progress this year with the communication device they have for her at school. the speech therapist is going to try and get another device approved since medicaid denied the one we wanted. the one she is trying to get approved is almost like the one we wanted but cheaper so we are hopeful. we did get an appointment with the neurosurgeon for a second opinion on june 30th. im nervous but hopeful this dr will help us figure out what to do for lexi or will know who to refer us to for help. lexi had a 10 minute plus complex partial on thursday night which freaked me out only because i have never seen one last so long. her seizures usually only last a few minutes. the dizziness is also bothersome because she gets so dizzy before one that she cant walk and then afterwards stay dizzy and cant walk either.

Sunday, May 14, 2017

the good and the bad

so good news last week is i talked to the person with vns again and lexis neuro has agreed for a 2nd opinion about the vns. we want to make sure every option has been looked at for lexi and if shes able to have the vns then lets go for it. we will see dr smith down at riley but it wont be for a while most likely due to the fact dr smith is a very good neurosurgeon and is very busy. so thats that. yesterday i went to change out lexis g tube like i have been doing since she got it and i cant get it out. so now i have to call gi and see if we can be seen and see if he can get it out without having to go in for a procedure to be removed. its never been like this so im not sure what is going on. also here lately lexi is picking at her skin and making herself bleed which is in turn messing scaring her skin. i dont know how to get her to stop. iv gotten her fidget toys but that dont seem to help which sucks cuz shes hurting herself

Sunday, May 7, 2017

addie update

addie is now 20 months on this coming tuesday. she has grown so much in the last yr and a half. she now weighs 25lbs and is 32 or so inches. she is talking up a storm. she loves to play with babies, and blocks. she loves the outdoors and will sit herself down if you say its time to come in. she is a great helper and loves to get into everything lol. her favorite saying is uh oh and baby. she started daycare last month and absolutely loves it and has since day one. i love the fact she gets time with peers her own age. she has such a great personalty i love it. parenting a child with non special needs is so much different.








dr appointment update




so tuesday we went and saw ent to see about the vns being placed again. basically he said he wont do it again because he feels her body would reject it again. the vns rep said we might look into allergy testing but honestly it could be a foreign body rejection and not allergic reaction to the metal. so i then called neuro and she is looking into other options since lexi is still having seizures. we havent been able to get the banzel yet because one pharmacy says they cant give it to us a specialty pharmacy has to. well called the specialty pharmacy and says a different pharmacy has already filled it. but cvs never filled it. so who knows whats going to happen. i also kinda demanded a longer eeg than the few hr one she had in august because i want to know what is going on over a period of days. so we shall see what they come up with. they are suppose to let me know tomorrow.

Sunday, April 30, 2017

long over due update

so since the last update we moved lexi to a new school for mix ability kids. it is a better school for her but her epilepsy has gotten worse since moving to the new school. at first she was having more dizziness and throwing up but now its absence, complex and more recently she is having tonic clonics again. the last one being yesterday. she scared the daylights out of me last sunday when she had a tonic clonic in the car that lasted over 5 minutes. we ended up going to the er and they gave her ativan before sending her home but that didnt stop the cycle she was in. she had seizures m-w and then went 2 days without any noticable ones and then the tonic clonic on saturday. this coming tuesday we will go meet with ent and see if its logical to put a vns back in lexi. im curious to see what he says since she had alot of problems the last time and had to have it removed. so we shall see. we did add a 3rd medicine in hopes it helps her somewhat. i know its a fact of life she will have seizures but the fact that they are coming more often is disheartening. school is going good for her when shes not having dizziness to where she has to lay down so thats a plus side. we are currently trying to get her a special needs stroller and communication device but so far both items have been denied. i guess just because lexi can walk they assume she doesnt need a stroller but she is 60 lbs and about as tall as me so when she has a seizure its hard for me to carry her. so im praying we will get them soon. ill try and keep you updated but heres an update for now