Dietician appt

This morning Finn saw a Dietician in hopes we can figure out how to get a little more meat on his bones. First thing they did was a weight and height check. Since May 10 he has gained 1.1lb and grew 1.75inches!! This was surprising to hear since it takes Finn like 2 months to gain 1lb. Now on the growth chart Finn is in the 5% for weight (he used to be 3%) and 50% for height. The doc said she thinks Finn is going to be tall since he has big feet :) Anyway, she gave me some guide lines to follow diet wise. The main thing that's going to change is how I make his bottle. I now have to double the scoops that go into his bottle to add more calories to his diet. This is kind of hard to hear bc his formula is so expensive and now we are going to go through a case even faster than before. But it's what needs to be done to get Finn healthier. We hope to get Finn to gain about 2-3lbs in 2 months. So we shall see how this new diet helps!

Pictures from Finn's 1st birthday

I can't believe it's been a whole year since Finn has been born. It has been a year full of emotional ups and downs, full of heart break and hope. I want to thank all the family and friends who were able to come to his party, and those who couldn't make it you were missed

Baby Treadmill part 2 and a little bit of OT

About a week and 1/2 ago Finn went on the baby treadmill for a second time. This time he was miserable. He cried the whole time BUT he walked more on his own than he did the first time. Which was very encouraging to his PT. She still wants to go ahead with our plan to get a consultation with the pediatric doctor who specializing in making these special walkers. We have an appt in July, unfortunately we found out this particular practice does not accept our health insurance. If our medicaid and BCMH acceptance letters come through then they will be able to help us, if not we are not sure what we will do. From what I have heard this place is the only place that makes this particular kind of walker...and out of pocket for this will be like thousands of dollars. I guess we will just wait and hope that our assistance will come through. I would hate to think that Finn will have to go without something that is critical in his therapy because of our financial issues.

Our little family has been on vacation for the past 10 days to celebrate Finn's birthday and spent time up at Atwood lake. Finn loves it up there. He loves being outside and being around all the family. Today was his first OT session in like a week. I was so impressed with how well he did today. His arms, hands, and shoulders were so easy to get loosened up. He was happy with the new toy his therapist brought for him. He was reaching out and touching it not just with his left hand but with his right too. He was very accepting to all the oral stimulation we were giving him. He just never stops amazing me. His OT even said today that he keeps exceeding their expectations of him. There is just no stopping him!

Also, it has been over 2 weeks since we stopped the ACTH and still no signs of seizures :)

Speech Therapy

2 weeks ago Finn had a Speech Therapy consultation. She came during one of the home visits with his OT. She asked me a lot of questions that were similar to the developmental tests the neurology office did, but since Finn was in his own environment I believe he performed so much better. The speech therapist was able to watch how Finn and I interact together, and how he responds to his OT. After she had seen enough these were her exact words, 'I am so impressed with him'. She kept saying how smart Finn actually is especially considering everything he has been through and what he has to work with, and how much he understands what we say to him. She said she would put place him in the 6-9 month range of his receptive communication. That made me feel like such a proud mommy. She was very sweet and told me I am doing everything right when it comes to his language...she really liked the way I talked to him and how much I talk to him. If anyone is around Ethan, Finn and I on a regular basis you will know we talk to Finn all the time...we sing to Finn all the time and apparently it has benefited him so much. This consultation was just so encouraging. It is amazing how his language was the main thing I was worried and concerned about since the left side of the brain is responsible for language, but it is actually one of his strengths. He knows so many words and responds so well when you talk to him. I seriously think he understands more than I know yet. She also said she is confident that we will get him saying more words. I almost cried when she said that. The way to get him to say more words is getting his mouth desensitized. Normal babies always put things in their mouths, which gets them ready for solid foods...which helps them learn to close their mouths, swallow, move their tongue...Finn doesn't do any of this. His OT and I are working so hard to desensitize his mouth. I am always sticking my finger, food, toys in there in hopes to achieve that. I just think back to like 4/5 months ago when I thought he would never get the hang of pureed foods, but he did. I am confident he will get the hang of more solid foods...it will just take some time. But overall I was very excited to hear how positive the speech consultation was!

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.