My friends continue to amaze me. Yesterday I received two very nice packages from one of my best friend couples, Michelle and Bob. The doorbell rang and it was an ice chest filled with dinners from Omaha Steakhouse. She knows how hard it's been and all we are going through with the Doodle and has been there for me, supporting me, listening me and letting me cry on her shoulder. She also sent a package to Dom, a nice set of puppets. He loves putting things on his hands, like socks and shoes, so this was the perfect gift for him. Her reaching out and helping me was so very thoughtful and if you knew all she had on her plate right now, you would understand even more how very generous this was.
Thank you Michelle and Bob. I love you guys and truly appreciate you.
The Doodle's health has taken a turn for the worse. His seizures each day have almost doubled. It's become a huge challenge to try and keep him from running around. All he wants to do is play and get down but when we let him down, with no warning, he crashes to the ground. The helmet has saved his life, I'm sure of that. But, it can't protect the rest of his body. He hit his chin pretty hard last night and now has a big bruise. He's crying a lot more now right after a seizure, even if he doesn't fall down. He must have a terrible headache or sharp pains. I wish so much he could talk and tell me what he is feeling. I find myself apologizing to him all day long.
We're tapering the Doodle off the Trileptal. He's down to 1 ml twice a day. Could this be why the seizures are increasing? Stanford says no. I called our neurologist's office today, even though he's been out of town for 3 1/2 weeks. I was hoping they could put me in touch with the on-call neurologist. But, he doesn't have one so the lady on the phone told me to hang in there until the Dr. got back. Hmm. Hang In There. So I called our pediatrician. The once who doesn't give a crap. In the coldest tone without a care or concern about the Doodle, he told me to increase his Depakote. Since none of the medications he's tried are working and he's been on 7different meds now, it would appear that Brain Surgery may be our only other option.
The nurse was supposed to start today. They sent someone out yesterday to get oriented here. Unfortunately, I had to call them and ask them to send someone else. She was not a good fit. Although really sweet, she was not capable of chasing the Doodle around the house or shadowing him like he needs to be shadowed. I feel bad, but we need someone who can keep up with him. Even I have a hard time keeping up.
We're going to get his blood taken today so they can check his medicine levels and see if the Depakote has destroyed his liver yet. Drawing blood is like torture, they can never find a good vain.