This past week was a really hard week for Leah and when Leah has a bad week we kind of all struggle too. Lots and lots of seizures!!! She got into many loops of seizures (this is when she seizes and falls asleep for an hour only to wake up into another seizure, this happens about 5-8 times in a row) we have tried many rescue medications for these loops and we finally found out that an extra dose of phenobarbital is the only thing that works. When we give her that extra dose I basically say see you tomorrow baby girl. She then sleeps and sleeps and sleeps. I am mentally and physically exhausted when she gets into loops. When she has had a third seizure in a row I really start to get anxiety. Sometimes she pulls through and doesn't start into a loop and of course sometimes it goes into a loop. By the fourth or fifth seizure they have turned into full blown bad tonic clonic seizures where she foams at the mouth and she is completely frozen. What seems like an eternity when she is unconscious and not breathing... is really only about 15-30 seconds! These are the seizures that make me cry! Unfortunately these loops happened almost daily this past week.
I will be honest the week really got to me. By Wednesday my heart was broken for her! I completely broke down in tears. I also read a story that morning about a sweet little girl less than two years old in New Jersey who didn't come out of a seizure and passed away. Her parents were actively trying to get the CBD oil for her and they worked very close with Governor Christy to try and get medical marijuana legalized. They told him please don't let our daughter die, please help us! This little girls life could've been saved. I cried and cried reading this article. It took me back to when Leah was in ICU a year ago and she wasn't coming out of seizures and was having such bad reactions to medications. I clearly remember looking our doctor and asking him if Leah would come out of this and wake up and he said so sadly "I don't know". Why do we and these other families have to continue the hell when a plant from nature is there for all of these kids. It can save their lives. I am angry right now at the politician's saying what my daughter can and can't have to save her life. I am so mad that we have to continue to wait for these stupid people on the hill to say whether my daughter gets to live or not. CBD oil is her only hope!
Anyway.... My dad got to my house right when the tears started flowing. He told me I needed to go escape for awhile. Man I would've loved to go to a spa but...come on now I am a mother of four kids. I needed to run to the bank, get gas and go grocery shopping. As I was driving home from the store my husband called me and said "bad news" my boss just got laid off and I got the news that I am suppose to stay home from work tomorrow and that I will be getting a phone call tomorrow. What? I said. Are you serious Chad? Where did all this come from? We didn't see this coming. He continued to tell me that this goes for the whole company everyone is staying home and getting a phone call. I immediately started crying again but only for a minute. I then said "It's okay Chad we can do this, we can make it. We have made it through the worst hell of our lives we can make it through a job loss". We then hung up and all that was going through my head was...we can live off top roman but Leah's medical bills and medical supplies will bankrupt us if we don't have insurance.
Well...Thursday came and all morning no phone call. By noon he received many calls from his associates that they were indeed laid off. He was sick to his stomach for their news and nervous for his news. Later in the afternoon his call came...They kept Chad. We were so relieved but so sad for his friends. Chad works for a Dermatology Pharmaceutical company. He is very happy there and best of all they have awesome insurance. We are feeling so blessed!
I need to end this post positive:
The day before Thanksgiving Leah had an awesome day. She moved all day and when we talked to her she tried to talk back to us. We cherish these days. Here's a video: Her voice is really soft so you have to really listen for it.
Here's a cute picture of her that day!