It is so hard for me to keep up with this blog...emotionally and physically. We are still in limbo regarding IVIG treatments as we have to meet with a neurologist at the Epilepsy Center at Children's Hospital as our regular neuro is not familiar with IVIG treatment. Of course, nothing is ever easy. It took 3 phone calls to the Epilepsy Center and a phone call to our regular neuro before we finally got an appointment. When the receptionist at the Epilepsy Center finally called us back with an appointment, the earliest appointment they could give us was April 21st. So then I had to call our regular neuro again since he said they should be getting us in within the next couple of weeks NOT in a couple of months. I am still waiting to hear back from our regular neuro. Of course, nobody is in a rush to get things done because it's not THEIR CHILD HAVING DAILY SEIZURES!!! Can you tell I am frustrated??? I am just so tired. Tired of always being Sophie's advocate. Tired of fighting. Tired of researching new treatment options. Tired of watching Sophie having seizures everyday. Tired of all the therapy sessions. Tired of not living a normal life. Tired of wondering what Sophie's future will be like. Tired of working with Sophie everyday to get her to do things that she should have been doing a year ago. Tired of feeling guilty. But Sophie keeps me going. That precious smile of hers. She is just so incredibly adorable. I love her so much.
3 comments:
Hi, We spoke awhile back on the yahoo support group. My daughter also went seizure free for 6 days only.I can totally relate.My daughter is 8 months old and has 5-8 spasms a day, spite 4 different seizure meds.I wonder all the same things you do!It is sooo hard.Just remember what doesn''t kill us only makes us stronger!She is going to get through this and so are you!Keeping you in my prayers!
Keep your chin up and keep fighting. You are not alone and we need to lean on each other whenever possible. We will be praying for you and hope that in that you will find a peace that only God can provide you
I'm just catching up on your blog. I'm strengthened by your honesty. It's exhausting to be the advocate for your epileptic child day in/day out.I remember telling the neurologist how frustrating & painful & exhausting it is to pull the docs into every aspect of treating my child.I was not going to accept that his life had to be daily seizures.To some extent,I expected more than they were capable of- considering their case load. But,at some point,I told them we weren't a team and being totally honest with them about how I felt.In fact-I talked to the head of neurology at our hospital during a status seizure hospital stay. Things changed.I prayed for a long time about how to talk with them. It worked out really well.I just didn't have the energy to fight the system when I was already fighting the epilepsy beast daily. We are praying for you.
Cathy
Noah's Mom
www.ketokid.blogspot.com
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