Trying To Stay Positive Through It All

It has been a rough few weeks

This last month and a half have been a real struggle for us....all 4 of us! We have really tried to stay positive but it is so hard when you watch your 23 month old have 20 plus seizures some days and wonder what you could have done different. Knowing that even if you could go back and change things would something else be the problem or would this have happened no matter what. Trying to pray and hope someone is listening only to be interrupted mid prayer to run to your baby to help soothe her through another seizure. Faith starts to dwindle and it is so hard to wonder how someone can let these littles suffer so much and why...why does this have to happen to her! Why is my 6 year old accustomed to watching her little sister have seizures, why does my 6 year old know what to do when she's having a seizure; she knows to tell us, roll her to her side (or make sure she is safe), rubs her chest and tells her it's ok she's there for her all while putting frankincense essential oil on her and then waving the bottle of it under her nose. When I was 6 I didn't even know what a seizure was, heck I never seen a seizure until my baby was 3-4 days old ( I was 33 not 6!) Life throws us all curve balls but sometimes it is so hard to stay positive after being exhausted and seeing no change after adding medication after medication.

Snuggling after school - they miss each other so much

We met with Emma's neurologist last week and she helped us to decide on which new med to try and which one to start weaning off since we don't want her on meds that aren't working. So we started Emma on a med called Onfi and decided to start weaning her off zonisamide. So now Emma is on Keppra, Onfi, CBD Oil, and weaning zonisamide. We had to call to get insurance to even cover this med because it is so expensive glad we finally got it covered though. We sadly haven't seen much improvement yet but we have to dose up to be at her full dose which will take 3 weeks. We are also awaiting an appointment to discuss the Ketogenic diet. Emma was starting to feel better this last week but last night 3:00 AM woke up congested and struggling to breathe, but her oxygen was 98%. Emma has a hard time clearing her throat which makes it sound like she is really struggling to breathe when in reality her oxygen is great. Sadly, she isn't feeling well again which again can result in a higher volume of seizure activity, can't this poor girl just catch a break....PLEASE!!!

We also got some bad news this last week our insurance will not cover or even help to get Emma into Intense Physical Therapy (4 hours a day, 5 days a week, for 3 weeks http://iptitherapy.com) and sadly it costs $6,000.00. I am not sure about you but we don't just have that money laying around :( and sadly we can't do a gofund me, etc. due to her social security. We are going to reach out to a local foundation to see if they can help with the cost but it's just so sad that she is double covered with insurance and she can't get the help she needs and DESERVES! We met with the therapists http://iptitherapy.com for a consultation 2 weeks ago and they really thought Emma would be a great patient and really benefit from this. Praying we can find a way to make it work.


On a positive note we got a phone call today and Emma's AFO's arrived (after a week of fighting with insurance again to cover them) we get to pick them up on Thursday. We are so excited cause she has been missing her stander and play time with sister (she couldn't use it cause she was standing on the side of her foot and it was really hurting her so these AFO's will help keep her feet aligned).

All in all we are trying to push through this rough patch and hope to come out stronger when it's over. Summer time and nice weather cannot get here fast enough. Keeping this cutie healthy is huge, with that being said remember if you are around a medically complex child please make sure you are not sick. A simple cough to you, could be a hospitalization for them. Praying we stay out of the hospital and that her seizures start to slow down.


Why, Why, WHY! I believe we will always ask WHY??? and I pray one day we will know the why and until then... we will Embrace it and never take one second for granted. Love you all!