Baby Treadmill

Finn had his physical therapy on friday and she hooked him up to a baby treadmill to start him getting used to the walking process. Finn's legs are very strong and he loves to stand so that is why his PT decided to play up his strengths and get him on the path to walking. Crawling continues to be a struggle and we think he will have more success walking. He did so good for the first try. He walked 47 feet and actually took 2 steps all by himself! That was very encouraging. Here are some pictures of him on the treadmill

His PT thinks that in a few months he will be a good candidate for one of this walkers.

He probably won't get one until the fall, but it's nice he has this option to help him walk. It can come with everything he needs (like arm and back supports) and will grow  with him. We go back in few weeks to do the treadmill again.

Finn likes playing with all the equipment at the center. Look how much fun he had in this tumble toy

Neurology Update

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!

Eye doctor follow up

Today we had Finn's follow up eye doctor appointment. It's been 3 months since we have seen Dr. Rogers. Dr. Rogers was able to get a look at the cyst in his right eye and concluded that it has not changed in size. So that is real good news. I was able to talk to Dr. Rogers about how Finn appears to see much better with his glasses than his contacts. He explained that his contact needs to sit just right on the eye for him to be able to see correctly, even though his contacts are weighted, there is still a possibility for them to shift their position which would totally screw up the way Finn sees. Plus, some kids just do better with glasses...so for right now we will stay with the glasses. Maybe when Finn is a little older he will tolerate the contacts better. When Dr. Rogers was doing his eye exam he said that it looks like Finn's left eye is his dominant eye, which is interesting because that is the side that was damaged by the stroke. Dr. Rogers said that Finn's right eye will continue to turn in towards his nose, and will eventually need surgery in about 5 years to realign it. There is no amount of patching that can be done to correct this. He was also able to speculate that Finn's vision is about 20/100. I asked Dr. Rogers if a cornea transplant would benefit Finn down the road, and he said no. Unfortunately it's Finn's optic nerves that are the problem and that is because of the stroke. So even though the cornea transplant could help the right eye not have scarring or the astigmatism it still would not help him see better because of the optic nerve damage.

Its really hard to hear all these things. To think that there have been so many breakthroughs with vision and not one of these procedures will help him see better. The good news is that the cyst has stayed the same in size, and that my baby can see. All the staff just love Finn. They have been seeing him since he was 2 days old. Dr. Rogers is just fascinated with Finn. He finds it amazing that Finn can move all of limbs. Dr. Rogers was the doctor that discovered that Finn suffered the in utero stroke and he always tells us that he will never forget that day and that it was one of his toughest days because he had to break that news to us. I always respond with 'You think that day was bad for you..!' I am really a big fan of him.

Therapy continues to go well. Finn is doing remarkable with the vision toys they gave us. It appears he is slowly grasping the concept of cause and effect. His OT wants him to start wearing hard splints on his hands to get his hands really opened up. I notice that when Finn isn't wearing his soft splints he keeps his hands open a lot more often. Finn is hard to predict. We will be starting speech therapy in a few weeks. I am looking forward to that. next week is a big week for Finn and I. A lot of therapy and doctor appointments. So I am sure I will be updating soon.