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!

I love this article.

I found this article on facebook today. When I read it, it brought tears to my eyes. I could have written this article. I feel all the emotions she writes about every. single. day. It's very touching, and hopefully eye opening to people who don't quite understand what my life is like.

http://www.huffingtonpost.com/maria-lin/special-needs-parenting_b_1314348.html

Finn vs Solids

 Things have been going pretty well over the past few days. Since Finn has been acting so much better Ethan and I decided to takeFinn home to my parent's house for the weekend. Something that has never been that much enjoyable because Finn cried the entire 2 hours up to north canton, and then when we got there he would be pretty fussy, and always wanted to be held. But this trip was different. Finn slept the entire 2 hour drive up. It was amazing. He woke up as soon as we got there, and was super pleasant and smiley. The trip over all was very nice. He was able to hang out in his pack and play and play with his toys and did not demand to be held all the time. He got to see a lot of visitors while we were home!

The only bad thing was Finn did not sleep like at all when we were home! He only had a total of 5 hours in a 24 hour period. He just couldn't settle down. He wanted to be up and play. He wasn't crying or fussing...he was just up. It kind of makes sense because the doctor said he is finally feeling better and is actually enjoying his time awake, so do we blame him for wanting to play a lot? He is making up for lost time. It makes sense, but boy I was exhausted this weekend. Finn was too. He fell asleep in the car on the way home too. Which is super. Then he came home, had a bottle and went to sleep in his crib for the next 8 hours! It was awesome. We were both so tired.

He was so good today. We resumed our quest to conquer solids. It was such a better experience today then it ever was before. He did not fuss when I put him in his high chair. He was still kind of confused when it came to the spoon and did not want to open his mouth for me. But we worked thru it. He finished his whole serving of oatmeal (something he has never done before) and it only took us like 20 minutes for the feeding...something that used to take us at least an hour, and in that hour there were many screams and tears. But today was a very positive experience! Just look how happy he is. It is such a relief that he doesn't mind sitting in chairs anymore. The doctor thinks the reason he was so particular about certain positions was because he had migraines due to all the seisures. And anyone who has ever had a migraine knows that different positions can really be painful. But it seems that we have fixed that problem. :)

Finn is now a rolling over machine. He rolled over 5 times in a row today. I was lucky to get one of the times on video.

He was so proud of himself. He was such a good boy today. I keep hoping and praying this trend continues.

Finn's neurology follow up

Well Finn has been on ACTH for almost 2 weeks, so we had our follow up appt. Finn used to see the neurologist whose speciality was strokes in infants, but since they are confident Finn will not have another stroke he was transferred to the nurse practioner who work specifically for the infantile spasm clinic in columbus (apparently it's one of the best in the nation). She was great. Finn and I really liked her. She was actually the person who reviewed Finn's EEG tape when he was in the hospital. As soon as she walks into the patient room she says, 'wow he looks great! So much better than in his film 2 weeks ago'. I told her that Finn is a new person. He's happier, calmer, and just a better baby in general. Finn was so good when she was examining him. He usually is very sensitive when it comes to his arms and hands, and never really lets anyone mess with them. He always keeps his hands fisted (due to the stroke), but today when the NP went to check the tone in his hands he opened them right up and let her play with them. It may sound trivial to people who have 'normal' babies, but that was a big deal for Finn and I. We discussed how well he was doing on the ACTH and what our next step is. Finn will have a follow up EEG on the 20th. Even though his seizures have stopped, there is a chance that his brain is still really chaotic. Hopefully, that is not the case, but if it is then we will have to talk about another medication to replace the ACTH. But if all continues to go well and his EEG is normal then we will finish up the 12 weeks on ACTH and he will be switched to Topamax, an oral anti-seizure drug. Also, the NP told us that his CT scan came back normal! What a relief! :)

The NP was telling me that she thinks that I made the right decision in choosing ACTH even though it is kind of a controversial drug. ACTH is a very effective drug in treating infantile spasms, but it is very expensive...VERY EXPENSIVE. For 1 5ml vile of ACTH costs $25,000!!! No I did not accidentally add a zero in that number. $25,000 per vile, and Finn needs 4 to complete the 12 week treatment. I don't know what we would have done if we didn't have health insurance. Thank God we don't have to pay a cent of that...not even a co-pay. Actually, our insurance called us when they got the bill and asked us if this drug is really necessary. Thankfully, Ethan was the one who took that call because if someone from the insurance company asked me that, I might have gone off on them. This is my son's life we are talking about...so yeah..it's very necessary!

Finn had therapy with his OT and Early intervention specialist on Wednesday, and they were so happy to see the positive changes in Finn. During that session Finn had accomplished all his goals that the EIS had set for him...something we had been working on since October and he just never could achieve. But now that he is feeling so much better and open to learning he did everything she wanted to see from him in that session. Now we are really focusing on getting Finn to eat solids. Finn did well in the carseat AGAIN today. He even fell asleep on the way home from the doctor. I think I am still in shock. Finn continues to do well at night sleeping in his crib. It's amazing. Finn now rolls over from tummy to back. Something he never did...but now that he likes tummy time he is figuring out how to get to his back. He still hasn't rolled from back to tummy, but he is so close. Finn's favorite thing to do is kick his legs...maybe he will be a runner some day. Here is a video I took of him yesterday...

Finnegan Video

Like I mentioned earlier, Ethan and I joined this website www.r-word.org and their mission is to end the use of the word retarded. On their website a lot of families have made videos of their children who are developmentally disabled and posted them on the site in hopes humanize the word 'retarded'. Ethan decided to make one of Finn and post it on the website. Here is the video...

Roid Rage

Well I thought I was able to dodge this bullet, but I think Finn is showing signs of irritability from his steroids. It started 2 nights ago Finn screamed and cried from 11pm-12:45am. There was just no comforting him. He eventually cried himself to sleep. This trend has continued for the past 2 days and it doesn't matter what time of day it is. I am hoping this doesn't last the rest of the 11 weeks we have on ACTH, but I survived the first 3 months of Finn's life when he was super fussy so I guess I can handle it again. At least this time he is sleeping so much better!

Yesterday Finn had his 9 month check up. I always hate going to the pediatrician, because I always end up leaving feeling like a terrible mother. I get too hung up on those stupid percentile growth charts. Finn is doing great in the height department. That has never been an issue for him. But yesterday I found out that he has dropped off the chart for weight. Finn gaining weight has always been an issue for him. But now he is finally at the point where he is eating all his bottles and actually enjoying it. He's gaining weight, sure its slow, but I feel like that is all that matters. He is still not eating solids so I think that should factor into this too, but my pediatrician just looks at me and is like 'well we need to work on getting him to gain more' Really? I am feeding him! I can't force him to eat more at a time. So I really don't know what else to do. He is tall and skinny, so what? I would LOVE to be tall and skinny! He is still on the chart for head circumference too. Which surprised me. That was the main thing the doctors were worried about, making sure his head is growing. It still is, which is a good sign. Granted his head only grows like a centimeter every 3 months, but we are doing everything we can to make sure his head continues to grow. I am just so disappointed in my pediatrician. Finn has not been in to see him since December, and in that time a lot has happened to Finn. The pediatrician knows what Finn has been through, and yet he didn't even ask me how Finn was doing with the new medication, if he is still having spasms. Nothing like that. I would think seeing that this kid has been through hell and back, and as a doctor and a father, he would be concerned for him and wonder how he was doing. But he didn't want to talk about any of that. He just wanted to lecture me about Finn not gaining enough weight? Really?! Whatever. I have been meaning to find a new pediatrician, but I have had a lot on my plate and that just kinda fell on the back burner. But Finn has a neurology appt. on Thursday and I plan to ask if they can recommend a pediatrician who might have had experience with someone like Finn.

Finn got no sleep Sunday night and barely slept during the day on Monday. Last night he did great. Granted he had a huge crying fit before he fell asleep, but he slept from 11:30-4:30. Then he got up and had a snack, then he went back to bed at 6. That's when Ethan's alarm went off so we could start getting ready for the swallow study that Finn had at 8. But the last thing I wanted to do was wake Finn up after he just fell back asleep. We decided it was in Finn's best interest to reschedule the swallow study. I am glad we did because Finn ended up sleeping until 10! Poor little guy needed sleep so bad. Now he has been his pleasant self smiling and talking up a storm.

End the word

I used to be guilty of this. I used to use the word 'retarded' in a derogatory sense. I never meant anything by it, it was just something I said because everyone said it. But since we found out about Finn I have stopped. That word has a whole new meaning to me now. And I'm not going to lie when I hear other people say it, whether it be in person or on tv, I get tears in my eyes. I don't ever want anyone to refer to my son as retarded. He's not retarded, he has a developmental disability. Ethan and I have joined this website to help spread the word to end the use of the r-word. I have posted the link below so people can check it out if they are interested, and I hope more people are made aware of just how hurtful that word truly is.

http://www.r-word.org

New and Improved

So Finn has been on ACTH for 9 days and I can not believe the improvement he has had. It's just amazing. For the past few nights he has been sleeping in his crib at night for 4-5 hours at a time, something he NEVER did. For the past 4 months I have been co-sleeping. I never wanted to co-sleep. I cherish my bed and sleep too much. But you do what you gotta do to get some sleep. Finn needed that reasurrance that he wasn't alone since his spasms and ticks woke him up and scared him. But with the ACTH doing it's job and relaxing his brain, he is finally able to get a decent nights sleep. I remember reading all the sleep books when Finn was like 3-4 months old, and they all said to put the baby in the crib when they are drowsy so they learn to fall asleep on their own. Well each time I tried that it was a huge failure. Finn would never fall asleep. So I gave up trying to sleep train and I switched to co-sleeping. But now things are different, Finn is different. Finn has been able to fall asleep on his own without being held and without his binky. His ticks no longer wake up, because he no longer has any ticks!



There have been times where I thought I saw a few seizures here and there but they don't look like how they used to. Which the doctors assure me is normal. That is how we know the drug is working. The seizures should be hard to spot, and eventually (hopefully) disappear all together. Now that we are down to 1 shot a day instead of 2, I am getting a little paranoid that the seizures will come back in full force. Finn and I have a busy week ahead of us. We have his 9 month check up appointment on Monday followed by a visit from his Early Intervention Specialist. I am so excited for her to see Finn. She will be so pleased to see the improvements in him. Tuesday we have the swallow study. Something that I am nervous about. Wednesday Finn has his Occupational Therapist appointment. Thursday we go back to see the Infantile Spasm expert. At that appointment we will go over the CT scan and make sure everything still looks ok in his head. Apparently, Finn has part of his frontal lobe on his left side, something I did not know until last week. The doctors were concerned that the left side was pushing too much onto the right side. So lets hope that is not the case. So yeah, busy week.

Everything about Finn is better right now. He enjoys playing by himself. He loves to lay on his back and talk to his toys. He is even better on his tummy now. Tummy time has been something we have been struggling with. He doesn't want to be on his tummy and if you put him on his tummy he would just lay down and not attempt to push himself up or roll himself over. But now look at him!

Dreaming of a binky

Want more information on Epilepsy?

Finn suffers from a very uncommon form of epilepsy called infantile spasms. If you want more information or would like to donate visit the link below!

Epilepsy Foundation