The Good:
Finn had a follow up visit with his Physical Medicine doctor. If you remember, he was the doctor that wanted to put Finn on Valium because of Finn's high muscle tone. I was super stressed out about this because I was worried about what the medication would do to Finn. Anyway, when the doctor examined Finn this visit, he couldn't believe how much Finn changed since the last time he saw him. Finn's tone has decreased so much that the doctor said that medications like Valium and Baclofen would not be good options for Finn. HURRAY! I was so excited to hear that! Finn's muscle tone has improved so much in every body part except for his hands. No matter how many exercises, stretches we do with his hands they just never open up. So the doc suggested Botox injections in Finn's hands to help decrease the muscle tone in hopes that Finn will start being able to open his hands and grasp toys. Botox is often used with kids who have high muscle tone in a particular body part, like Finn's hands. The Botox will loosen the nerves in his muscles so it will be easier for Finn to move them. Finn will be getting 8 injections in February and it should last him about 4 months. The doc said that some kids just need a few rounds of Botox treatments and the nerves sometimes never stiffen back up, other kids need their injections every 4 months for years and years. I am hoping for Finn to be like the former.
Also, Finn has been doing so well during his therapy sessions. His trunk control has improved so much. He is so close to sitting I can feel it! Right now Finn only has therapy once a week, but after the first of the year he will be starting therapy about 3-4 times a week. I feel that with all the extra therapy we will be getting results out of him. Finn is such a hard working and determined kid. I am very confident that Finn will eventually be able to sit by himself, grasp and hold toys, and I truly believe Finn will be able to speak someday. He tries so hard!
The Bad:
Finn saw his opthamologist earlier this month and the news was heart breaking. He determined based on examining Finn and going off the anatomy of Finn's eyes that Finn is legally blind. Being blind and legally blind are 2 totally different things. Finn can at least see lights and colors. At least he is not in complete darkness all the time. The normal person's focal point is the size of a pin. This is why we can see things so crystal clear. Finn's focal point is the size of a dime, which means basically everything he sees is blurry. 20/200 is considered legally blind. When I asked the doctor if Finn's vision is 20/200 the doctor responds "worse" and that is even with glasses. We won't know just how bad it is until Finn can read an eye chart. It's heartbreaking and there is nothing that can be done to fix his eyes. Maybe I am just stupidly optimistic, but there are times where I think Finn can see more than what the doctors say. He makes eye contact with you...you have to be pretty close to his face but he does it. We will just have to wait until he can tell us more.
We had a follow up with the neurologist as well. Finn has been doing great on his topamax. It has stopped his seizures which is good, but it has totally disrupted his sleeping habits. Finn has never slept very good, but before his seizures started back up he was at least sleeping in his crib and for 4-6 hour stretches. Since the topamax, it has made him super awake at night. One night I was up with him from 1am-6am! Not only has it made him more alert at night, but he has stopped sleeping in his crib. Co-sleeping used to work when Finn refused to stay in his crib, but now that has stopped working. He just won't sleep! It's been very hard on all 3 of us. I begged the neurologist to help me! I requested a sleep study done on Finn since he has never ever slept well. She agreed to do a sleep study on him only after we try a few things. First, we will move around his topamax dosage to earlier in the evening instead of at bedtime and increase his melatonin dosage. If that doesn't work there is a medication we can try to put him on that they use to help aid kids with sleep. I am nervous about that bc Finn always seems to have the opposite effect! I need to give him caffeine or sugar...maybe that will make him sleepy. We have adjusted his topamax for about 3 weeks now, and I think his sleeping has improved, but it still isn't great. I am crossing my fingers that some day not too far into the future that my house will sleep at night!
The Ugly:
Finn is now supposed to wear braces on his legs. We first got them to help decrease the tone in his ankles. However, he has no tone in his ankles anymore but the Physical Medicine doctor still would like him to wear them since it will also help improve his trunk control and help him learn the correct way to walk. Finn hated wearing them at first. He still isn't thrilled about wearing them now, but I can tell a difference in his trunk control since we have been wearing them.
Finn continues to work hard and impress everyone will his determination. He continues to surprise me daily, and everything he does whether it be going to doctor appointments or therapy sessions he always wears a smile.
