Scheduling all 3 neurology appts on the same day seemed like a good time until the day got here. I am thankful for God's timing so that Marlee Anne was busy today. Thanks to our precious friend Kendra for keeping her busy all day & for our sweet nephew & family for going to ball practice with her & bringing her home.
In Michala's typical personality she wanted to go first. After Dr. Flamini saw the pinches & scratches on Michala & me, he agreed it was time to try some medicine for her. We are starting her on respiradol. It's used regularly for patience with Autism so hopefully it will help with her aggression & pain. Please pray that this is a step in the right direction.
Her seizures are getting progressively worse so we are increasing her Sabril again. If this doesn't work we will decrease & try onfi. Every time we think we are running out of options a new med is approved. So thankful for that. As we were discussing her seizures Dr. Flamini coughed & Michala had a startle seizure. He adjusted her VNS. She has about half a battery life. Not sure how long that will last before she has to have surgery to replace it with her new adjustment.
Abe was next. Within a little while of talking about him he started having a seizure. Not something we wanted to happen but glad it happened in the neurologist office. His last EEG showed activity all over. That's typical for his Lenox gastaut syndrome but so hard to control. The truth hurts so bad sometimes. He is having several seizures a day. We are increasing his banzel. Praying this will help & give him some more seizure free moments. His VNS was adjusted & is also at 50% battery life. Dr. Flamini said your children are so complex.
We saved our sweet angel Mary Elizabeth for last. He has never treated her so we went through her history with him. That's always hard but such a healing time for me. After examining her he said he does think she has had another stroke. This is when I took a deep breath almost like a gasp. Again the truth hurts & my mind started wondering when would the next stroke hit, how would it be & how would it affect her. That one I need some time with. He said that he would be glad to order an MRI but was concerned about putting her to sleep for it. He went on to say the results wouldn't change anything. These words rang in my ears & still are. The results won't change anything. He is concerned about how tight she is. We are going to try baclofen. Please pray this helps her.
Thankful we have made it through another day by the grace of God. Thankful for all the love, support & especially the prayers. Thank you!!!