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!!