The Good, The Bad, and The Ugly

It's been over 2 months since I last updated, and so much has been going on! The month of December was filled with doctor appointments and therapy sessions so my free time has been limited. So much information has been given to us over the last month that I would like to share. Let's start with the good news...

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.

Photo Contest

So I entered Finn in a photo contest for kids with Cerebral Palsy. All you need to do to vote for Finn is have a facebook account and click on the link below. The winner gets a free ipad that includes language technology apps. I think you can only vote once a day. We all know Finn is pretty darn cute so lets prove it to the facebook community!

Cerebral Palsy Photo Contest

It was nice while it lasted...

Well a lot has happened this past week and I wish I could say it is all positive. It all started last Wednesday. Finn started acting very strange, a lot like how he was back in January and February. Very needy, crying as soon as I would put him down, not sleeping, and very twitchy. At first I thought it was lack of sleep. He didn't sleep very well Tuesday night so I just went about our day, keeping a close eye on him but didn't see anything too disturbing...until Wednesday evening. When I was getting Finn ready for his bedtime bottle I saw it...a seizure. He had 2 seizures within minutes of each other. I was scared. I was alone (Ethan was out of town) and I wasn't sure what I should do. I gave Finn his bottle and he seemed to be ok. Still very twitchy but not having seizures. I decided to try really hard to get Finn a good nights sleep and I would call his neurologist in the morning. Trying to get Finn to sleep when he is acting like this is near impossible. His twitches wake him up and make him cry. Wrapped in his weighted blanket and the weight of my arms I was able to get him to sleep. I decided to have Finn sleep with me that night since it was essential he got some sleep and I just couldn't risk putting him down and waking him. Finn was able to sleep through the night wrapped in my arms. Me on the other hand, I did not sleep at all. I cried silently to myself all night. Terrified of what was happening to Finn, what other challenges we were going to have to face in the morning. Morning came and Finn appeared to be a little more normal and less twitchy. I still called neurology first thing in the morning in hopes that they could get him in right away. I called Ethan and my mom very sleep deprived and crying. Ethan left his business trip early and came home. My mom called off work and came down. We all waited together to hear back from his doctor. Finn seemed fine. He was happy and smiley and started to act totally normal. I started to think that maybe I had overreacted. Maybe he was just having a bad day. Maybe I didn't see him have a seizure. Neurology decided not to take any chances and wanted him to come in to have an EEG the next day. Even though Finn started to act normal I noticed that he felt very hot. I decided to take his temperature and sure enough he had a fever of 102. This was the first time in 16 months that Finn was sick. That would explain his strange behavior. Feeling a little relieved I went into the EEG appt feeling pretty confident, since fevers can cause seizures in kids who are already susceptible to seizures. Finn's fever went away, we had a nice family weekend, Finn was back to normal. Everything seemed fine again. Until I got a call from neurology on Monday evening. Finn's EEG came back abnormal and showed that he started having seizures again. They want to start him on Topamax. I was heartbroken. I was so confident he was ok. Even though I had been preparing for this news for 7 months it still came as a shock to me. So we started Topamax last night and it will take a month for him to get up to the dosage that they want him on.

Another bit of shocking news happened yesterday. Finn had an appointment with physical medicine. These are the doctors that will be getting him all his adaptive equipment that he needs. The doctor examined Finn and told us that based on what he is seeing in Finn he has a new diagnosis for him. Cerebral Palsy. When he said that, it felt like my heart was ripped out of my chest. Up until this point the only medical diagnosis was developmentally delayed...they didn't know how else to categorize Finn. But this doctor said that based on Finn's motor skills (or lack thereof) that he meets the Cerebral Palsy criteria. This also helps for insurance purposes and helps us get all the adaptive equipment that Finn needs. The doctor also talked about putting Finn on medication for his tone issues. Since Finn's seizures started up again he does not want to use Baclofen, since that med can affect the anti seizure med. So he wants to start him on Valium. This was the drug that I do not want Finn on. It's a very strong drug and it makes me nervous.

We have a lot of decisions we need to make in the next few months and I just hope that we will make all the right ones. Finn continues to be his happy, smiley self. He never ceases to amaze me.

Moving on up!

Well Finn has had 2 doctor visits since I have last updated. And both have gone great! At the end of August Finn had his "12 month" check up, (it was supposed to be in June but because of his steroid shots they made us postpone it b/c of the affects the steroids have on his immune system) and I was very happy with what we found out. Ever since Finn has been born his weight and head circumference have been big concerns. Finn has always been in in the 3-5% in the growth charts for both categories. But I am happy to announce, that with a help of a dietitian and all of the therapists we work with Finn is now in the 10-15% in weight and 10% in head circumference! This is HUGE news for us. It's just always nice to see physical evidence of all the hard work Finn has been doing.


In other news yesterday Finn had to be put under anaesthesia to get his eyes checked. Dr. Rogers still likes to take a look at the cyst in Finns right eye, as well as get an exact measurement of Finn's eye. The good news is that the cyst in Finn's eye remains the same size and...the most exciting news of all...Finn's prescription has gotten a little bit better! His right eye went from a 7 to a 6 and his left eye went from a 3.5 to a 2.75. I was super excited to hear this news. Even though it's still pretty bad eye sight, it is still encouraging to hear. Today we went to get Finn some new glasses and I have to say these glasses are amazing. We got him little square hipster frames and they are made of this rubbery looking material and these glasses are indestructible plus they grow with him, which is great because Finn outgrew his old glasses in like 6 months. Here is a photo of the glasses (but we decided not to get the round frames because he looked too much like Harry Potter)

Here are some other pictures of Finn. His OT made him a sensory bin that is filled with different kinds of beans, and he likes to get his hands in there and play around. He was sitting up by himself the other day, which is a new task he is close to achieving!

 

Summer Morning walks...

I am so pleased to see how well Finn is doing with this walker!

So much to blog about!

So many things have been going on for my little family the last month I haven't had a chance to update the blog until now! Between therapy appointments, doctor visits, and trips up to the lake, it has been hard for me to find some free time to update.

First, occupational therapy has been pretty fun for Finn and I lately. We have started to incorporate music therapy into our routine. It's a special kind of music that uses special tones that relaxes the nervous system. While this music is playing, I put Finn in a flexed position to help get his body used to being in that kind of fetal position. Finn hasn't been in the fetal position since he was a fetus! We have been doing this music therapy for about 3 weeks, and we have been seeing big changes in Finn. His trunk has become stronger, his arms have become less stiff, and he has started to understand how to sit like a toddler (of course he still needs assistance). But it's really nice to see things change in him. I have to do this a hour a day, and it's nice to see results when we are both working so hard. Not only are we doing music therapy, but we have been doing a lot of sensory play with Finn. Since Finn still pretty much keeps his hands fisted most of the time, he doesn't get input into his hands. So it is important for us to put a lot of different kinds of textures in his hand. Today, Finn got to play with shaving cream and he really enjoyed it. He was able to use both of his hands to paint a picture for Ethan and I. Finn had so much fun that he started to cry when it was time to stop.

In physical therapy we have been continuing working on getting Finn to walk. Last Friday his PT brought us a walker for Finn to borrow until we get our very own. Finn has been doing so great with this walker. I didn't think he would get the hang of it so soon! He loves to stand and I think he is really going to enjoy this independence. It is kind of unusual for a toddler Finn's age to get a walker this early, since the experts really prefer a baby to be able to crawl before they get put into walkers, but it doesn't look like Finn will crawl any time soon. His arms are so weak. He wants to walk, he wants to stand. So I am glad that me and his PT are on the same page when it comes to playing up Finn's strengths. I actually think that this walker has helped Finn with his trunk control and balance.

In the end of July I went with Finn's PT to a medical equipment place to see about getting some adaptive equipment for Finn. It's amazing how much this stuff is. The walker we want to get is 'several thousand dollars' and that is not the only thing I would like to get for him. Since Finn still can't not sit on his own, bath time is becoming kind of hard. He has out grown his infant tub because he is so tall and I was looking at something to help me for when Finn gets bigger. This simple looking mesh incline that fits in the tub is $1200. And I found out that on a federal and state level that hygiene products are not covered under insurance or assistance programs. That is amazing to me. I think the lawmakers would feel differently if they had to sit next to a stinky person. I am hoping my dad could make something for us because I am not going to pay that much for bath equipment. The good news is Finn was approved for BCMH so they will help pay for certain adaptive equipment. The walker is a must for him.

We saw the neurologist a couple of weeks ago. Everything continues to go well. Finn is still seizure free. Finn's head has actually grown over 1 cm in the last month and a half which is very exciting news. It's proof that he is learning and growing. His doctor thinks it is time for Finn to go on tone medicine. He will probably start a medication called baclofen in the next 6 months. I am waiting until I get a consultation with physical medicine before we decide on that medication for sure. His neurologist also suggested we put Finn on melatonin since he has such sleep issues. He takes 1mg before bed and I think it has been helping him in some aspects. He falls alseep pretty soon after taking it, but he still doesn't stay asleep. The past few days I have been putting him on his tummy to sleep. He has been giving me about a 4 hour stretch in his crib before he is up. I will take it for now.

Finn has just been doing so great lately. He appears stronger, he's more independent, and been very talkative. All very positive changes in my opinion. He is still has the sweetest disposition and seriously all he wants to do is love you and get a little love back.

No sleep for Finn

Finn is going through a no sleeping phase at the moment. It might be because of teething or it might be because of tone issues. The fact is Finn hardly ever sleeps in his crib...He wants to be held all night which is wearing on me. I haven't had a decent nights sleep in 13 months. I have discussed the sleeping issues with his OT and we decided to try a few things. 1.) we will be getting a weighted blanket for him. Finn still has these startle reflexes that wakes him up during the night. We are hoping the blanket will minimize these reflexes so he can stay asleep. 2.) I am going to talk to his neurologist about putting Finn on melatonin to help Finn get into a deep sleep. Finn is the lightest sleeper I have ever encountered. One little creek from a floor board he is wide awake. So hopefully melatonin will help him get deep quality sleep. 3.) Ethan and I have been kicking around the idea of putting Finn on medication for his tone. I rejected the idea back in May, but with how stiff Finn's arms always are and the fact that his tone issues could be the reason why he can't sleep I want to bring that topic back up for discussion. I go back and forth all the time about this decision. I don't want to just put him on medication for the wrong reasons...like the fact that I myself am very sleep deprived. I am afraid of going down this path when Finn is still so young. We see the neurologist next week and I plan on talking to her about all my concerns and hope she can offer some advice to help me decide what path to choose.

Not only does Finn have a terrible time sleeping...but the car rides are also a huge problem. I have no idea what else I can do to help this situation. We got him a new car seat, he is facing forward, I try to time the car rides when Finn is fed and sleepy...nothing ever seems to work. Imagine listening to this every time I want to drive to see my parents...which is a 2 hour drive...and it's not just part of time he cries...its the whole 2 hours

Another curious thing has come to my attention during Finn's therapy sessions. Finn's right arm has become lose and very easy to manipulate unlike how stiff and rigid it was just a few months ago. His left hand is still his dominate hand, but it has become stiff just like the right one used to be. Very weird. Also, when using the baby treadmill or practicing walking, his right leg does better than his left. Now Finn's stroke affected his left side of the brain which in theory should make his right side be the side that is stiff and not working properly. But that isn't the case with Finn. Just when I think I have figured him out, he changes on me.

Full of laughter!

Finn and I had a great fun-filled weekend up at the lake. Finn got to try out his new floaty toy, go on a boat ride...and the best news ever, Finn laughed for the very first time! This is huge news for us. Something I have been wanting and waiting for over 12 months. But it happened. Finn gave us that gift...even more reassurance that my son is a little miracle and will always keep surprising us. He did it on Saturday afternoon while on the boat...then again sunday evening for Ethan and I. I was lucky enough to get a video of it!!

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.

New updates

Well we are over 1/2 way done with our ACTH injections and so far so good. Still no sign of seizures (yay!) but slowly Finn has reverted back to some of his old habits. Nothing compared to what he used to be like, but Finn is back to wanting to be held when he sleeps. No matter how hard I try he just won't sleep in his crib. So we are back to cosleeping. Which I am disappointed about. I know some people will suggest sleep training, but Finn is a special baby. He does not know how to soothe himself. He still can not keep a binky in his mouth by himself, he still isnt aware of his hands so he does not suck on his thumb or anything like that. Finn's main problem is his hyperextention. When he is upset he gets so ridged and archs his back, and when that happens there is no calming him except to pick him up. He will seriously cry for hours and hours until he is picked up (trust me, we have tried). His Occupational therapist said that as of right now I am his only calming mechanism. So for the time being I will be what he needs me to be until we can find another alternative. Other than the sleeping issue, he continues to be his normal self. I have noticed that on the days that he has his shots, he is a little bit more needy than the days that he doesn't. But nothing I can't handle and still nothing compared to what he was like before the drugs. He is doing really well with solids and actually likes sitting in his high chair. Car rides continue to be hit or miss. Some days he likes the car and other days he doesn't. As far as I can tell there is no way to predict when he will be good in the car. I am thinking (and hoping) that once I turn him around to face forward he will be more comfortable. But we shall see.

Another thing that is going on is Finn's vision. He has been wearing hard contacts every since the doctor gave them to us back in December. He said that this will be Finn's best chance for optimal vision. But I have noticed that Finn constantly keeps his head to the left when he has his contacts in. His therapists have trouble getting him to come to the middle as do I. However, when he does not have his contacts in or when he wears his glasses he seems more alert and more inclined to look at toys, faces, and keep his head centered. I really don't know why this is. Maybe he doesn't like the way the contacts feel, maybe somehow his contacts got switched and they are in the wrong eye (there is no way to tell which is left and which is right). I purposely had Finn wear his glasses when he had therapy yesterday and he did so well keeping his head centered and looking at all the toys they were putting in front of him. So until we go see the eye doctor next month I am not going to make Finn wear his contacts.

Right now in therapy we are concentrating on getting Finn to understand cause and effect. The ipad is going to play a huge roll in his therapy. I am so glad he has that technology available to him. Finn's strength is music and sound. So we are working with a bunch of apps and computer programs that center around music. Here are some pictures I took yesterday of Finn actually interacting with toys (he never plays with toys)

Finn has also started physical therapy. Since Finn is not showing signs of crawling anytime soon, and since his legs are so strong and he loves to kick we are going to work on getting him to walk. In a few weeks we are going to hook him up to a baby treadmill to get him accustom to walking, and if that goes well we will be looking to get Finn a special walker. A lot of very exciting things are on the horizon for him, and I feel so lucky that we have all these great programs, people, and equipment available to him.

Also, I just had to post this picture of Finn...Ethan was singing to him...and apparently Finn did not like it.

Easter

Articles that give me hope

Girl with half a brain retains full vision

Born with half a brain and living full life.

baby boy born with half a brain teaches himself to walk

Great news!

This morning we got the news that Finn's EEG came back normal!!! I can not tell you how relieved I am. I swear i thought I was going to throw up on the drive to the hospital. Then our doctor was 10 minutes late coming into our exam room. I thought that was a sign of bad news. Terrible thoughts were racing thru my head...I already had tears in my eyes by the time she came in. Then she said 'I'm going to make this quick, his EEG looks great!' I just started bawling right there. The doc actually hugged me bc I was pretty much a hot mess. I was just so overjoyed! I already had myself preparing for the worst. I am just not used to getting good news from doctors. But finally a little ray of hope has shone upon us. Don't get me wrong, there are still a lot of hurdles to overcome, and just because his EEG looks normal now doesn't mean his seizures won't come back. The thing that is scary is no one can tell me anything certain. Finn is a very special case. He might be one of the lucky ones who never experiences any more seizures for the rest of his life, however, odds are he will but we don't know. Last time we saw the doc 2 weeks ago she talked about putting him on topamax after the ACTH ran its course, but she feels differently now. Since he is doing so well she wants to give him a chance to see if he can be drug free. So after ACTH he will not be on any medication. This kind of scares me bc what if he does start to have seizures again. More than likely they won't be infantile spasms but they could be a different type of seizure. And what if that seizure causes huge damage...? It's all these what ifs but like the doc said nothing is a guarantee but she wants to give him a chance to be drug free.

I just want to thank anyone and everyone who has been praying for Finn. The positive responses to the blog, to finn, everything has been so overwhelming. I am truly blessed to have you all in my life. I get strength from all the love and support. Plus, I'm lucky enough to witness a miracle everyday. Finn is truly a miracle baby.. Again thank you. My cup runneth over.

Follow up EEG

Today was Finn's follow up EEG since he has been on the ACTH. Unfortunately, we will have to wait until Thursday for the results. I watched the EEG machine the whole time, but it was hard for me to determine if the brain waves were any better. I know what to look for when he has a spasm, but he was crying most of the time during his EEG today so his waves were still kinda chaotic looking. I don't know. Like Tom Petty said 'the waiting is the hardest part'.

We are in week 4 of the ACTH treatment, he is down to every other day and a smaller dosage. I have been getting super paranoid about the meds not working anymore. I have noticed that his newborn reflexes have come back to a degree. They only happen when he is laying flat on his back, and they are not even close to what they looked like before the ACTH, but still is this a sign. I keep trying to tell myself the doctors told me not to pay attention to those things, they are benign and he will eventually grow out of the them. But I can't help it. They stopped all together for 3 weeks, and now they have sort of came back...is this foreshadowing...? Finn also has been an awesome sleeper the past 3 1/2 weeks, but the past 3 days he has been horrible. He has only been sleeping a total of 4 hours, and not even in his crib...It has been on me. Could we just now be seeing the side affects of the steroids?? My body got used to sleeping for 8 hours a night, and it is not handling this 4 hours a night crap very well.


Finn continues to do well in other aspects. Like tummy time. He is a champ at that still. His head control gets stronger every day. Here he is sitting in his bumbo seat, something he could only sit in for like a minute before his head would fall back. But look at him!






Also, his car seat. He doesn't fuss when he is in it and usually ends up falling asleep in it. I might start driving him around at night to get him to sleep...something I never thought would work for him. Also he is getting better with solids every day. He has moved on from oatmeal to carrots, and so far so good. I took this video of him today. It's amazing. He would never sit in his high chair long enough for me to even attempt to get any food in him, but now it's different. It is seriously like night and day.

Here's hoping we get good news on Thursday!

Fun in the sun

Just thought I would share some pictures of Finn enjoying this beautiful weather!