Finn's neurology follow up

Well Finn has been on ACTH for almost 2 weeks, so we had our follow up appt. Finn used to see the neurologist whose speciality was strokes in infants, but since they are confident Finn will not have another stroke he was transferred to the nurse practioner who work specifically for the infantile spasm clinic in columbus (apparently it's one of the best in the nation). She was great. Finn and I really liked her. She was actually the person who reviewed Finn's EEG tape when he was in the hospital. As soon as she walks into the patient room she says, 'wow he looks great! So much better than in his film 2 weeks ago'. I told her that Finn is a new person. He's happier, calmer, and just a better baby in general. Finn was so good when she was examining him. He usually is very sensitive when it comes to his arms and hands, and never really lets anyone mess with them. He always keeps his hands fisted (due to the stroke), but today when the NP went to check the tone in his hands he opened them right up and let her play with them. It may sound trivial to people who have 'normal' babies, but that was a big deal for Finn and I. We discussed how well he was doing on the ACTH and what our next step is. Finn will have a follow up EEG on the 20th. Even though his seizures have stopped, there is a chance that his brain is still really chaotic. Hopefully, that is not the case, but if it is then we will have to talk about another medication to replace the ACTH. But if all continues to go well and his EEG is normal then we will finish up the 12 weeks on ACTH and he will be switched to Topamax, an oral anti-seizure drug. Also, the NP told us that his CT scan came back normal! What a relief! :)

The NP was telling me that she thinks that I made the right decision in choosing ACTH even though it is kind of a controversial drug. ACTH is a very effective drug in treating infantile spasms, but it is very expensive...VERY EXPENSIVE. For 1 5ml vile of ACTH costs $25,000!!! No I did not accidentally add a zero in that number. $25,000 per vile, and Finn needs 4 to complete the 12 week treatment. I don't know what we would have done if we didn't have health insurance. Thank God we don't have to pay a cent of that...not even a co-pay. Actually, our insurance called us when they got the bill and asked us if this drug is really necessary. Thankfully, Ethan was the one who took that call because if someone from the insurance company asked me that, I might have gone off on them. This is my son's life we are talking about...so yeah..it's very necessary!

Finn had therapy with his OT and Early intervention specialist on Wednesday, and they were so happy to see the positive changes in Finn. During that session Finn had accomplished all his goals that the EIS had set for him...something we had been working on since October and he just never could achieve. But now that he is feeling so much better and open to learning he did everything she wanted to see from him in that session. Now we are really focusing on getting Finn to eat solids. Finn did well in the carseat AGAIN today. He even fell asleep on the way home from the doctor. I think I am still in shock. Finn continues to do well at night sleeping in his crib. It's amazing. Finn now rolls over from tummy to back. Something he never did...but now that he likes tummy time he is figuring out how to get to his back. He still hasn't rolled from back to tummy, but he is so close. Finn's favorite thing to do is kick his legs...maybe he will be a runner some day. Here is a video I took of him yesterday...