Twists and Turns.
Yay! Ohhh. :( Grrr! Yipee!
This was my day. It was full of ups and downs again! Let's start with the beginning.
8AM - Another great therapy session for which I was late for! Christian always, always, almost always throws up as soon as we are about to walk out the door in the morning. It never fails. Happened again today. But when we got there he did really well again! The OT gave him "inputs" for which he responded to by moving his leg over by himself while turning from side to side. He also slightly bent his knee and flexed his foot during the rolling exercises. She said at the end of the session that she certainly didn't think he would be responding so much this quickly. Go Christian!
930AM - Received the call from the neuro's nurse. This is how it went...
"The doctor said it looks like seizures. So he wants you to increase his meds from 1mg to 1.3mg. If it doesn't go away in a week increase to 1.5mg." - nurse
"Did he say anything else about the EEG?" - Mama Bear
"No, uh, actually he didn't have time to read it. He just glanced at it." - nurse
"Well, does he know what kind of seizures they are?" - Mama Bear, confused as to why the EEG hasn't been read.
"Would you like me to ask him and call you back?" - nurse
Unacceptable. You didn't read the EEG, but you feel comfortable increasing a dosage on a medication (Keppra) that's side effect could be to cause more seizures??? Irresponsible. I am NOT one of those parents that blindly follows orders without understanding what I'm giving my child and why. And you don't even know what kind of seizures they are? How do you know if he is being treated with the right medication? I'm not asking for much. I just want someone to go over the EEG and show me where it shows seizure activity and what could possibly set it off. It's not that Dr. G doesn't know. It's that he's too busy to read the EEG or even call me to go over it with me or answer my questions. How do I know this, because he told me he was too busy yesterday. In the words of Nanny Joe (Super Nanny), "THIS IS UNACCEPTABLE!"
I was at first devastated. Again, wind out of sale. But then I called the neuro that runs the HBOT place, they questioned the same thing - "He didn't read the EEG? He just glanced at it?" They said, "Have them burn it on a CD and send it over. We'll read it and go over it with you. If they don't give it to you, we'll do another EEG here." Acceptable.
I'm not in denial. I'm not trying to avoid hearing a diagnosis. I simply need an explanation before I pump more meds into a little brain that is still trying to heal. I need to understand. He does get paid by my insurance company, right? Then there's really no excuse for this kind of behavior. I'm so glad I have the HBOT center. And Dr. G's office will burn a CD of the EEG for me. The nurse asked, "...to get a second opinion?" Uh, yeah, that pretty much sums it up.
1000AM - Cranial Sacral/Osteopathy work with Dr. Christian Peters. Awesome name. And he's actually a Christian. He even prayed with me over [my] Christian before he started the session. He's a doctor of osteopathic medicine and he is always so calm and Christian seems to really respond to him. His behavior tends to change after his treatment (this is his 2nd visit). Christian goes back in 2 weeks and I will blog about any changes he's made after his 3rd session.
I discussed the neuro appointment with Dr. Peters. He explained that there may be answers I want and may not get and to just take what I can from neuro, build my team of trusted medical professionals, and move along. On my way out I picked up a little blue slip of paper with a bible verse on it that was on the secretary's desk and put it in my purse.
I felt defeated by the neuro call, I admit. I felt a little lost and like I couldn't find God at that moment. I pulled out the blue slip of paper from my purse and read:
Fear not, for I am with you; Be not dismayed, for I am your God. I will strengthen you, Yes, I will help you, I will uphold you with My righteous right hand. Isaiah 41:10
God has a funny way of surfacing when you need Him most. This was just what I needed and at the perfect time.
3:30PM - A letter comes. It's from our insurance company....and it's a reimbursement check for the hyperbaric treatments we did in Phoenix that we paid for from donations (THANK YOU!) and out of pocket. And this reimbursement check is enough to bring us to the $5000 we need to start more HBOT treatments. It is almost unheard of (although, this is changing) for an insurance company to pay for HBOT. This is a true miracle. And in just two weeks, we have been able to secure funding. Now we can do one hard session a day and one session a day at home, giving him two sessions a day, which is ideal. I don't know if they'll reimburse again, but this is exactly what we needed and when we needed it.
God. Is. Good.