Finn had his neurology appointment last thursday, and every thing continues to go well. His doctor is still happy with the way he looks and how we are still seizure free. He only has 3 injections of ACTH left! We discussed the next steps after medication. One possibility is Finn's infantile spasms could come back, if they do, we will probably go back on ACTH in hopes that a second round will totally wipe them out. Another possibility is that Finn will develop a new kind of seizure, which he has an increased chance of doing because of his brain injury. If this happens then we will be going a different anti-seizure medication route. I am becoming increasingly nervous the closer we get to finishing the ACTH. Every little movement Finn makes I am terrified that it's a seizure. But we have to take one day at a time and I am very lucky that I am with Finn 24/7 and that if I do see something that doesn't look normal I can rush him to the hospital.
Another issue we talked about is Finn's tone. He is pretty much in a constant clenching state. This is why his arms are so stiff and why Finn has trouble gaining weight. He is burning off pretty much everything he takes in. Finn only weighs 18lbs. He eats the average amount a kid his age eats, but it's not enough. His neurologist says his weight will continue to be a struggle until we can decrease his tone. So the steps we are taking to fix this are going to a dietitian in hopes we can increase Finn's caloric intake so that he can gain weight. Right now he is in the 3% and we want him to get to about the 15%. Another way we can help lessen Finn's tone is medication. The downside to that is once you start medicating him for his tone he will be on medication for the rest of his life. Ethan and I decided against this for right now. Finn is doing so well in therapy and it takes about a 1/2 hour but eventually he loosens up and is able to do his activities. I am pretty confident that we can lessen the tone with just therapy alone right now. However, if later down the line the tone continues to be a huge problem and prevents him from advancing in his therapy then we will discuss our medication options for that.
His neurologist wanted to see where Finn was developmentally. So they were able to administer the Bailey's test which evaluates infants to see where they fall. It may not come as a shock but Finn is pretty delayed. The test breaks down into 4 categories.
Fine motor skills-Finn is a 1 month old in this category. Which didnt really surprise me because of his poor vision and the fact that he keeps his hands fisted most of the time.
Basic motor skills-Finn is a 4 month old in this category. He still can't sit up by himself (because of tone) and he can only lift up onto his elbows during tummy time.
Receptive communication-Finn is a 6 month old. I was very encouraged to hear this. This means Finn understands certain words that we say to him. He knows his own name, daddy, eat, spoon, mommy...I am confident that the more we talk to him the more he will understand.
Verbal communication-Finn is a 3 month and 21 days. He talks all the time, but he still only says vowel sounds, Gahs Goos, and yeah's. He has not progressed onto the B's or M's and again it's because of his tone. He keeps his mouth open alot and so when we start speech therapy next month that is going to be a big thing we are going to be working on.
After hearing these results I was pretty heart broken. I mean my 11 month old basically is a 4-5 month old. But after the initial shock wore off I realized that this is good news. It shows that Finn is learning. He is doing and understand things that he probably shouldn't be able to. I am confident that with all the therapy he is getting that he will just continue to learn and grow. Sure it will take him longer than the rest of the kids, but he can do this!
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