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.