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

Friday, March 4, 2016

6 months without an update oh my

starters since its been 6 months since i apologize iv been extremly busy.

lexi: shes been doing ok in school now that we have found ways to help her better. her beginning of 1st grade was really hard she was being disruptive and not doing her school work. we had her iep in february and since then a huge change has happened. we have decided to add in play time after she does some work and that has been a major improvement. we have also decided that she needs to focus on how to be socially appropriate and how to act right socially so they are working on that as well. health wise its been up and down. seizures have been occuring more and she had a 3 minute tonic clonic a few weeks ago. shes been referred to the mayo clinic but i havent heard from them. we are working on getting a communication device for her as well. the holidays were hard on her but we got through them and she celebrated her 8th birthday 3 weeks ago.

my sweet addalynn. she is now almost 6 months old and is getting so big. in october she was diagnosed with milk protein allergy after having blood in her stools. so we switch her to nutramigin and then her reflux hit hard. so shes been on zantac since. she still has bad reflux but overall shes a happy little baby. she is sleeping mostly thru the night waking at 2:30 to eat. she learned how to roll over at 13 weeks which shocked me but since then she is content in rolling all over. she laughs and smiles at everything and has found a love for putting her feet in her mouth. she loves her nana papa auntie and is fond of her daddy when she sees him. she is growing so big and i cant wait to see what life has in store for this sweet little girl.

Monday, September 21, 2015

welcome addalynn

let me first back track and update the last 2 months. lexi started vimpat after having an increase in seizures again and since putting her on that med her seizures have calmed down again which is good. we never did the eeg because i was having complications with my pregnancy so i canceled it and will hopefully reschedule it or get a eeg scheduled for around here closer to home. lexi started school in august and loves being in 1st grade. they are working with sign language and trying to figure out the best way to help her learn. at the end of august she went and seen neurogenetics and he decided to do an extensive epilepsy panel that will take 4 months to come back. lets hope something shows so we can finally figure out whats going on with her. other than that everything has been status quo with lexi. now with my end of my pregnancy i hit a really rough patch. during a routine visit in august my blood pressure was really high, so they started to really watch it. the next one was high again so they decided to do extensive blood work and had me do a 24 hr urine collection to see if i was going into preeclampsia. during that time i was getting nst 2 times a week which showed she was happy but i was having contractions which at first i wasnt feeling. then the 5th when i went to the hospital to have my nst my dr decided it was time to put me on blood pressure meds because it was only getting higher and not any lower. at that time he said he didnt think i would make it much longer due to the contractions i was having. that monday i went back in again for a nst and again was having contractions and he once again said he highly doubted i would make it much longer and wouldnt be suprised if i came back that night. instead of relaxing that day i went to the flea market with my mom and continued to have contractions but around bed time they died down and i was able to sleep. tuesday the 8th i went to work and started to have bad contractions around 4 but i figured they were braxton hicks and worked the rest of my shift. that night my mom was like call me if u need me i really believe ur in labor. so i went home and during the whole night i contracted hard and finally around 9am i texted my sister inlaw and asked her how i would know if i was in true labor. she decided to come take me to the hospital. we got to the hospital where they hooked me up and the monitor showed i was having very strong contractions. the nurse paged my dr who after talking with my other dr who delivered lexi decided it was best for me to have my c section that night. so they got me prepped and at 8:23pm on september 9th addalynn was born. she weighed 5lbs 9.6oz and was 18 1/2 inches long.  when the dr went to cut me my uterus started to shred but they dont know why it did that. addie did have a hard time learning to breath and her blood sugars took a few days to finally even out. but now 12 days later we are getting into a routine and she is a huge blessing to my family. she is gaining weigh but very slowly so hopefully she starts to gain more soon