Jadon's Infantile Spasms Story

I created this blog so that our friends and family will be able to follow Jadon as he fights to overcome Infantile Spasms. I also hope that if anyone else is going through this, they will find this site helpful. I have posted a video of what infantile spasms look like, as well as everything we are going through. I hope by posting this I am able to get help for other children who are having these spasms. The earlier this is diagnosed the better. Feel free to leave me comments. I love to hear from you. If you have any questions just email my mommy. She likes to help people in any way she can.

Monday, January 30, 2012

Catching Up

So I have alot to caught you up on. First of all I'm still doing amazingly well. I'm trying to repeat everything anybody says. No I can't say all the sounds but I try so hard. I can now say 18 words. I only had 10 before surgery. My speech is just taking off which is so amazing being that we took out the part that your speech would normally come from. I did have a little set back. I started running a low grade fever Wednesday. My mommy took me to the pediatrician Thursday and she said that I had a little discoloration in my nose. She went ahead and started me on antibiotics just to be safe. Well Saturday my fever went up to 104. My mommy called my neurosurgeon in Detroit. He said that it should not have anything to do with my surgery but to follow up with my pediatrician on Monday. He also said it was safe to go ahead and give me motrin. They told us no motrin after surgery but it had been long enough. Thank God because tylenol wasn't working. My fever continued to get worse. Sunday morning it was 105.4. My mommy and daddy decided to bring me to the ER. Fever that high is very scary and it was causing me to vomit. They did lots of test on me. All the test were negative. So we ruled out RSV, pneumonia, and flu. They decided to admit me overnight for observation. They also wanted to run more test. Today we found out that I had adno virus. I have been in the hospital 3 times due to this virus. The good news about this time was I did not have any seizures. Yes 105 fever and NO seizures. I was released from the hospital this afternoon and I'm doing much better. My fever is still going up to 102 but we will take that over 105. My fever should go away by tomorrow or the next day. Thanks to everyone who prayed for me. I have some videos of me doing some amazing things that I will try to post tomorrow. It's the same ones I have on facebook but I know some of you do not facebook so I'll try to get them up. Please continue to pray for me. You know me I"m fighting hard and I'm not going to let this virus get in my way. Love you all, Jadon

Tuesday, January 24, 2012

2 weeks

It's been two weeks since my surgery and I continue to do extremly well. I'm scooting all over my mommies house. She said I make her nervous but she lets me go. I'm getting stronger and stronger everyday. I have regained all except three of my skills prior to surgery. I'm not crawling, I'm not pulling up and climbing on things, and I'm not walking in my walker. I try to do them but because of my right sided weakness I can't. I'm sure I will get them in the next few weeks. My smile is still a little crooked but it gets better every day. I'm talking and trying to repeat words. Not only can I repeat my words but I'm doing it much better than before surgery. It's really unbelievable. My main problem right now is sleep. I do not want to sleep. I'm up all during the night and I'm only taking one nap a day. I just want to explore and learn. My attention is so much better since my surgery. I can stay focused on one item for several minutes. My mommy and daddy love to just watch me and the things I'm doing. I wanted to let everyone know that some friends of ours of putting a fun run and 5K race together. You can visit the following website for more details. We would love to see you there.

We are also selling t-shirts. Please email my mommy if you would like one. I want to thank Cory and Lori Trahan for designing the shirts. I absolutely love them. I'm leaving you a picture so that you can see what the shirts will look like. My mommies email is monica.pailet@gmail.com

Thank you all so much for praying for me. I'm amazed at how many people are following my story and praying for me. I have so many prayer warriors and I definitely feel your prayers. I'm so thankful that God is using me to touch so many people's lives. My prayer is that everyone who reads about me and follows me will know that there is a God and will become better people because of me. Love you all, Jadon

Saturday, January 21, 2012

I'm doing amazing!!!

Sorry I haven't blogged we have been very busy since we left Detroit. So let me catch you up. I did excellent on the flights home. I slept the first flight and played a little on the second and then fell asleep. I was so happy when we got to NOLA. I was much stronger and so happy. That was until they started messing with me. I then started fussing everytime someone walked in the room. I started therapy the next day. I was doing great. I was holding my head up and I tried so hard but I finally couldn't go anymore and I got sick and then fell right asleep. I want everyone to understand that the therapy at NOLA was absolutely great. I'm just not strong enough yet to handle the requirements that insurance needs me to do to be inpatient. I also do not like hospitals. They make my anxiety go way up. With that said my mommy and daddy thought it would be better to take me home. It has been the best thing for me. I have been so happy at home. I'm doing new things every day. Yesterday I said the word go. Today I said PaPa, Jacob, and puppy. In order for you to realize how awesome it is that I'm talking I have to tell you this. You use the left side of your brain for communication skills. Well they removed my left side. You see my communication skills had already transferd to my right side before I had surgery. I believe with all my heart that God was preparing my brain for this surgery all along. I'm also putting weight through my right arm. I can get up on all fours. I'm moving my right arm. I'm trying so hard to learn to crawl again. I will get it. I'm also able to stand on my legs as long as mommy is holding my waste. Its totally amazing. My family is so excited to get to witness this miracle that God has done in my life. Please continue to pray for me I still have a long way to go. Also thank God for what he has done. I have an EEG two weeks from now that will rule out seizure activity so please start praying for that we receive great results. I'm sure we will. Love you all, Jadon

Oh for those of you interested I'm leaving a picture of my CT scan. You can see that one side has brain and the other no brain. I find this totally amazing. By looking at the picture it will definitely make you believe in miracles.

Wednesday, January 18, 2012

We are coming home!!!

I was discharged from the hospital late yesterday evening. By the time we got to the hotel it was too late to blog. I really enjoyed sleeping in the hotel bed. It was much better than the hospital. I got to sleep by my brother. He stayed right by me all night and played with me this morning. We managed to get to the airport this morning with all our bags. We got a wheelchair and it has helped alot. I'm still so weak. So yes we are at the airport in Detroit waiting for our flight!!! When we get to NOLA I will have to go straight to children's for therapy. We were hoping to get to go home for a night or two but because of insurance reason we have to go straight there. We will be there anywhere from one to two weeks. If my anxiety level doesn't get better we are going to come home and do therapy in my home where I'm more comfortable. So we will see how I do. Please pray for safe travels.

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Monday, January 16, 2012

The Best News Yet!!!

They took my last drainage tube out yesterday. I was so glad to get it out. My head feels much better now. I had a great day the rest of the day. I did get sick last night but it was due to the pain medicine. I do not like the taste of it and it makes me sick. I had my CT scan this morning. There is no fluid build up so I do not need a shunt. We will have to watch for fluid build up in the next few weeks but I should be ok. I lost my IV today and they are not putting another one in. I'm super excited about this. I have 0 cords attached to me :) I'm going to stay at the hospital tonight in order to make sure I can handle all meds, foods, and liquids without IV. If I do well then we will be discharged tomorrow. We will then stay at the Ronald McDonald House that night. If I do ok then we will stay at a hotel by the airport Wednesday night and fly home Thursday. The doctors say it is fine for me to fly. They have had several patients fly home after surgery so we should be fine. I will then be admitted to NOLA Childrens hospital for inpatient therapy for another week or two depending on how I do. Right now I'm pretty weak so it will probably be more like two. Please pray that I can handle all the meds by mouth and pray that I will not get sick. I'm so ready to get out of here. Thanks for praying. The doctors say I'm doing amazing. I know that God is the reason I'm doing so well. All the praise and glory go to Him. Tomorrow makes a week of 0 seizures. I used to have 1400. It's totally amazing that they can take out half your brain and you can do so well. It will definitely make you believe in miracles!!! I've changed my song to How Great Is Our God. He has definitely answered our prayers. Please continue to pray for me and don't forget to thank God for what He has and will continue to do for me. Love, Jadon

Saturday, January 14, 2012

Working Hard

I'm feeling better and getting stronger each day. Yesterday afternoon the speech therapist came in and I signed more for her. She was blowing bubbles and I wanted her to do it some more so I told her. I didn't move my right hand, I just brought my left hand over to my right. Pretty smart :) I haven't said any words yet but I will. I try to move my mouth to say the words and then I fuss because I can't do it. I will keep trying until I'm able to do it. I had another great PT/OT session today. I sat up in my bed and held my head up most of the time. The therapist is supporting my neck in this picture but I did sit up while holding up my head for a few seconds during therapy. I'm one determined little boy. I have been smiling and laughing some too. Especially for my brother Jacob. I can't wait to get home so we can play. My last drainage tube will come out tomorrow. I will then have my CT Monday. So please pray that my circulation will pick back up and I will not need a shunt. When you pray please do not forget to thank God for 0 seizures in 4 days. I could just jump up and scream as I type that. It really is amazing. Some people have been saying things such as I never knew how blessed I was until they read my story. Well I do agree, you are very blessed but I wanted you to know that we are blessed as well. You don't know how blessed my family is to have me and to be able to see God work. I have been their greatest blessing even though this is very hard. I have made each and every one of them a better person. Please continue to pray for me and I love you all very much!! Jadon

Friday, January 13, 2012

More Great News :)

I am still doing really well. I'm eating and drinking. Since I'm doing this they turned my IV liquids down. I'm taking my pain medicine by mouth only and doing great with that. They were able to take one of my drainage tubes out this morning. I didn't like it to much but it feels much better now that it is out. The plan is to take the second drainage tube out in two days. They will then do a CT scan Monday or Tuesday to see if the circulation has picked back up. If it has I will not need a shunt. So please pray my circulation picks back up. I do not have to wear the gauze on my head anymore. This makes me very happy. You know I do not like hats anyway and the gauze was bothering me. I had an excellent PT session this morning. I picked my head all the way up two times. I also moved my right arm. They put ice on my arm to help stimulate the muscles and sure enough I moved my right elbow up. Praise God!!!! I'm not moving it all around but since I did move it this morning we know that it will come. I have minimal swelling and I'm slowly getting my strength back. I'm leaving you a picture of me that we took today. I wanted everyone to see how GREAT I look!!!! Keep praying we still have a long way to go. Oh and I have been seizure free for 3 days now!!!!!!!! God is Great!!!!

Thursday, January 12, 2012

4 bites and an ounce of juice

I never knew how exciting four bites of toast and 1 ounce of juice could be. LOL Yes I drank some juice and ate some toast this morning. I'm having trouble with the right side of my mouth due to the surgery. This is normal but its making it hard to eat and drink. You know me though, I'm a fighter and I'm already doing it. I'm also moving my right hip and my toes. I haven't moved my right arm yet but it will come. So lots of good stuff now the not so great stuff. I do not like when they come in to sit me up. I get so nervous and I break out in a rash. Everytime someone comes in after that I break out because I think they are going to hurt me. It's so sad. I'm also fustrated because I can't move my right arm. Everyone gets telling me I'll get it back but I'm still not happy about it. I'm confused and don't know what happened to my body. I'm also very weak. All I want to do is lay in my bed and hold someones hand. Everyday I'm getting stronger though. It is weird to watch me lay in my bed and not have seizures. I've had these for almost two years so you can imagine how weird it is to not see them. My mommy and daddy are watching me so closely to make sure they don't see any seizures. Again we are thanking God for what he has done and praying that my recovery continues to go great. Thank you so much for praying for me. You are helping me get better.

Wednesday, January 11, 2012

A quick update

I'm doing really well. My daddy stayed with me last night and I slept through the night. I'm very content and enjoying not having seizures. The doctors said that it's great that I'm moving my right leg already. It means the transfer of motor function started before surgery. Now the rest has to transfer. Please pray that my motor function will transfer to it's maximum potential, that I will have no seizures , and that I will not need a shunt. Also pray for a speedy recovery. I do have thrush in my mouth but they gave me some medicine for that and I'm better. The next few weeks are very important and we will know more of the total outcome each day. Of course EEG is the only thing that can prove no seizures but we will not do one for a while. I need to heal right now because I'm very weak. So far I'm doing great and we are not seeing any visible seizures. Your prayers are helping so keep them coming. Love you all, Jadon

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Tuesday, January 10, 2012

A long 10 hours

I went back to the OR this morning around 8:30. I was such a brave boy. I never even cried. My surgery lasted about 9 hours and then I was in recovery for 1 hour before I got to see my mom and dad. It was a very long 10 hours but I did excellent in surgery.
The nurse called my family every hour and let them know I was doing fine. Im now in the PICU and should be able to go to a regular room tomorrow. The great news is I'm already moving my right leg. The doctors didn't know if I would have any movement but I do. I'm not moving my right arm at all and I have weakness on the right side of my face. I should get movement back within the next few weeks. I will always have right sided weakness though. We knew this before surgery. Right now we are thanking God for protecting me during my surgery, for them not having to give me much blood, and for Him giving us the strength to make it through this day. We have a long way to go and we still don't know all the results of the surgery but each day we will know more. So tonight when you pray for me don't forget to thank God for what he has done and will do in my life. Oh and we have seen 0 seizures since 5:30 when I woke up from surgery. It's way to early to know if I'm seizure free but this is huge for me to go 6 hours with no seizures. I haven't done that in a very long time. So tonight my tears are tears of happiness. I'm giving all the praise to God.
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Monday, January 9, 2012


Well the results are not really what we wanted but I think I can write this blog. Ok so my seizures are originating in my motor cortex as well as all over the left side of my brain. They came in and told us that the motor cortex was involved and wanted our opinion before they went into conference. They originally told us they would come back with multiple surgery options. Well they only gave us one option. If we want these seizures to stop I will need a complete hemispherectomy which includes removal of my motor cortex. We were trying to leave the motor cortex alone. So what does this mean? Well it means that I will have permanent motor delays on the right side of my body. I will not have much fine motor skills with my right hand. I will have gross motor skills but no fine motor. The doctors are not real concerned about this because I already do not have much fine motor skills with my right hand. Basically the seizures have already damaged my motor cortex which explains why I already have right sided weakness. He said I will learn to walk, run, and play as any other kid would. You know I believe things happen for a reason and if any of you knew my great grandpa you remember he lost one of his arms in a car accident. This was a reminder today that loss of some function in my right arm is better than all these seizures. The other news that wasn't so great was that there is a small area of malformation on my right side. We have known this, this is nothing new. So why is it so important now. Well because of this they do not know if I will be totally seizure free after my surgery. I may still have 2-3 seizures a week. We do know that my EEG from Boston did show 3 possible right sided seizures during my last EEG study. With that said, I am currently having 1400 visible left sided seizures a week. That does not count the constant spiking that is going on in my brain. The EEG that is being done right now has been active since I got out of surgery Thursday. What that means is my poor little brain is never resting. Again its so bad its amazing that I'm doing so well now. The doctors said that by removing my left hemisphere my outlook in life is much better even if I do have a few seizures a week. You see if we don't do it my seizures are going to continue to get worse and worse. We are looking at a life in and out of the hospital and my life expectancy goes way down. So no they didn't give us more than 1 option but I believe its because God had already made the decision for us. He knew we wouldn't be able to make it so He made it for us. It's like the doctor told us today. We either do nothing or we give him his 1 chance of a better life. Please pray for me tomorrow. I know you all will but this is so hard on me and my family. My surgery will begin around 8:30(7:30) your time tomorrow. We are trusting in God, that's all we can do. We are praying that I'm having my last seizures today and that we will never see another seizure again. God be with us!!!

Sunday, January 8, 2012

Big decisions tomorrow.

Not much time but I have a prayer request. Tomorrow is the day that we will be given the surgery options. Please pray for the doctors as they meet in the morning. They will discuss my case at 10:30. 9:30 our time. We will not know anything until around 1:30,12:30 your time. Please pray that they can get all of these seizures without having to take out my motor cortex. Thanks for praying. I believe we are all fixing to witness a miracle. Just so you know. I had a great day today. I even smiled and laughed for my daddy. I'll update you tomorrow when we know the plan. Love ya, Jadon

Finally some pics for you :)

I love this pic. Thanks for praying for me!!

Me with my friend Connor at my prayer service before we left

Waiting at the airport in NOLA

And we are off. I sat in the my big chair all by myself some of the ride :)

Leaving the hotel room on the way to the hospital. I was so happy and having a blast on the luggage cart. My family sure does miss that laugh and their happy baby.

Right before surgery. Notice the colors we are wearing :) I'm showing them how I feel about this place. LOL

The day after surgery in the PICU

In a regular room. The first time mommy got to hold me. It was a great feeling.

Prayer blanket hanging from my hospital crib. It blocks the door so I don't have to see who is coming in :) This helps me sleep better.

Getting kissed from my big brother Jacob.

Cheering for my Saints!!!

The pancakes I never got to eat but cute.

Sleeping like an angel. This is so hard but I will stay strong and beat this :)

Saturday, January 7, 2012


I'm doing better. Still in pain but I haven't thrown up since my prayer request was sent out last night. God hears And answers our prayers. I'm pretty much sleeping during the day and night now. This is good bc when I'm awake I'm miserable. I do not like the nurses messing with me at all. I throw a fit. I mean a fit. They actually can't believe how strong I am. The best part about today was I got to sleep in my mommies lap. I was so relaxed and peaceful. I'm still not eating anything but I'm drinking a little more. I had trouble peeing today. The medicine is relaxing my muscles and I'm not wanting to use them. Well they were fixing to have to catheterize me. The nurse went to get the stuff. My mommy told my Aunt Mendy to research the Internet and see what would help me go. It said warm water. So we did it. It wasn't working. My mommy started praying some more. The nurse came back got all her stuff out and ready. She was fixing to do it and I went so they didn't have to do it. I'm so glad because it hurts when they do it. They also had to change my bandage today. The plan was to take some wrapping off and add more. Well my entire wrap fell off. I was happy when it did. It felt so good. Mommy saw my cut and it's not as big as we expected. It looked great considering the situation. They rewrapped it and it feels much better. My swelling is very minimal. The doctors commented on how well I'm doing. It's because God has sent his angels to watch over me and protect me. I did lose one of my leads. The charge nurse last night was changing my sheets and messed it up some kind of way. My mommy was so mad. The doctor said it is ok bc they have all the information they need. Thank God they didn't have to repair it. Please continue to pray for me as this is very hard for me. We are feeling your prayers all the way up here. People keep saying how strong my family and I are but I have to give all the credit to God. He is the only one who give us the strength to keep going. We have our moments where we all cry together but we keep trusting in His plan. Love you all, Jadon

Friday, January 6, 2012

Not so good but staying positive.

It's been a really long night. I'm very agitated and have anxiety when they come in the room. My mommy and daddy stayed with me until about 12:00 then my daddy stayed the rest of the night. My aunt Mendy came about 6 and then my mommy came back around 7:30. I'm still nauseated. I'm also still mad that no one can hold me. I'm moving out of ICU today. When we get to the other room my mommy will be able to hold me. All of my seizures are coming from my left side still. This is great news. I'm having lots of seizures. Some are due to the trama and others bc I didn't have any medicine yesterday. I'm back on my Meds so hopefully they will get better. We still do not have any results yet. All we know is that I'm spiking a whole lot on top of the 150-200 seizures we were seeing at home. We have to get these seizures to stop. They said that they are shooting over to my right side which has to be stopped. Please continue to pray. I have to be honest and tell you this is horrible. Yes God is giving us the strength to get through it but it feels like we are in a bad dream. I will leave you with some good news. First they said my swelling looks great. Not too much. Tomorrow will be the peak of the swelling. Next, our neurologist is on call this weekend at home and here in Detroit. Dr. C(neuro here) said not good for me but good for you. Lol. He said he is only on call ever 7 weeks. To me it's just another sign that God is taking care of me. Love you all.
I will stay strong. I will fight. I will win.

Thursday, January 5, 2012

Not much time to update. It's been a very long and hard day. I have 132 electrodes attached to my brain which means 132 wires. I also have all the other normal hospital wires. I do not like having these wires attached to me. I was doing really well until around 5:30. I started having stomach pains and got sick. So I didn't get to eat anything. I was able to hold down some juice about two hours ago. I'm very agitated. I'm mad because I can't crawl into my moms lap. I keep trying and reaching and crying but they won't let me. Mommy got as close as possible until I went to sleep. They gave me some medicine to help me relax. I'm also having withdraws from my sabril. I haven't had it since yesterday and it's one of those medicines that can effect you that way. So they did order it and gave it to me a little while ago. My seizures are very bad and everytime I have one I cry. The doctor said he is getting plenty of information. He said we will have some results of the EEG tomorrow. Please continue to pray as we will have to make some big decisions tomorrow. Also pray that I will be able to settle down and get some rest.

I'm in surgery now.

They took me back around 8:30 this morning. I fell asleep in my mommies arms before the even took me back. She laid me on the table and I stayed asleep. They put the mask on my face and I was so brave for my mommy. I slept until the last minute. I woke up let out one little cry, grabbed my moms finger, and went to sleep. The doctors have been amazing. We actually forgot my blanket and one of the doctors said wait we left the blanket. I'll go back and get it. The nurse in the Operating room said that she will call and update us every hour. She said this isn't a requirement but that she tries to put herself in the parents situation and she knows she would want an update so she said she will call. They also gave my mommy and daddy a number which they will update on a screen in the waiting room. The anesthesiologist also told mommy and daddy that he will be right there the entire time making sure I'm ok. This made us feel so much better. Thanks for praying. God is deginitely here and we can feel your prayers. I'll update again after survey.

Wednesday, January 4, 2012

Surgery is tomorrow.

We made it to Detroit. We have to be at the hospital for 7 which is 6 at home. Not sure what time they will get started. I'll update sometime after surgery. Please send lots of prayers our way. This first surgery is going to give us lots of information and lots of decisions to make. We know that God will continue to help us make decisions. Love ya, Jadon

Monday, January 2, 2012

Tomorrow is the day

We are leaving for Detroit tomorrow. I can't believe it is already here. I really don't have much to say because this is starting to feel like a dream. Anyway we are having a prayer send off tomorrow at 2:00 in the parking lot at house on the rock. We would love to see you there. I'm very excited that the community can all come together as one and pray for me. It's awesome and I can't wait to see everyone before I leave. Well I'll update you once we get to Detroit. Right now I'm going to snuggle with my mom in the rocking chair while she holds me just a little tighter tonight. Thanks all of you for your prayers. I can't believe how many people are praying for me and how many people truly love me. Love you all!!! Jadon