Yesterdays post was written after being woken up at 4:50am and unable to go back to sleep. Then followed by an AM fight with Andi and taking Lily to 3 therapies by 11am. Then 2 seizures within hours apart, I was a little upset. She ended up having 3 seizures total yesterday which is upsetting, but we all took a long nap and I went to my yoga class last night and I feel refreshed. Plus I got about 9 hours of sleep last night, so yeah, I’ll take those reigns back.
Yes I have those days where I want to be told what to do and just follow, but that isn’t how epilepsy works. It is numerous medications and a lot of gut reactions and interestingly enough a lot of parental advice goes into what the neuro decides. At least in our case and at times I want to walk in the office blindly and let them tell me what to do, but I know too much and unfortunately our neuro knows I know too much and he relies on me with every decision.
Maybe it is time to try keto again. Ugh. I don’t know. I hate keto. I hate not feeding Lily what she loves, but I do remember she did do pretty good on it. Not perfect for sure. It was never a cure all for us, but it has been many years. I guess whatever we decide we better do it soon since I need to have this thing flowing smoothly before a new member boards this family plane.
I don’t know. Send some prayers this way. Pray for wisdom for me and for Lily’s neuro that we make the right decision regarding seizure control.
Have I mentioned I hate seizures? Not today at least, right?
Calm Amongst the Chaos
Mama of 5 seeking calm in the chaos
Calm Amongst the Chaos 
Sending prayers your way…I am so sorry to hear about Lily and her seizures, we are dealing with the same thing here. Hope your week goes a little better 🙂
Hi Kim,Am still visiting you everyday, sometimes more just to see how you are doing. I’m really sorry you are having so many problems with Lily just lately, especially as things had been going so well in comparison.As I have said before, I truly admire yourself and your husband and family, this is an amzingly hard job you have been given both physically and emotionally. My thoughts are with you all everyday.How is Andy doing, how old is she now and is she at school, and if so how is she doing and does she enjoy it. How are you doing with your pregnancy, I can’t believe you are nearly halfway through already. I hope you have been keeping well through it as that would certainly help. I hope you have some extra help available to you as you get further on with your pregnancy. I know you have to lift Lily as she can’t do that for you but my concern is that she is going to be a bit too heavy for you the farther on with you pregnancy you get. As you may remeber from previous comunication I am a Midwife, specialised in Neonatal Intensive Care. What was concerning me was the extra pressure exerted on your uterus whilst lifting Lily. I think you have my e-mail, and you are most welcome to use it to write and have a chat any time you wish. I will try to answer any questions you may have and if I don’t know the answers I can find out for you. I’ll quit rabbiting on for now and look forward to hearing from you.Take CareLots of Love to you all Carolynn xxx 🙂