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, December 30, 2013

December update!!

I continue to do amazingly well. I did have my adenoid surgery and I did great. I had a little bit of trouble holding my oxygen levels in recovery but I finally pulled through and I was back to my normal happy self. I am such a joy to be around. I wish everyone could see in person how well I'm doing. I have such a sweet personality and I say please and thank you without having to be told. I can get complete strangers to talk to me and play with me. Don't worry I know that I can't go with strangers, I'm a mommies boy and make sure she is by me. One of the best things about talking to strangers is they don't realize that anything is wrong. They have no idea of my past. They think I'm a normal 4 year old. And yes in lots of ways I am like a normal 4 year old. In fact my language skills have basically caught up. The main thing others notice is my speech. I'm still working on my articulation skills, yes you can understand me but you have to listen close as I don't say all my sounds correctly yet. They continue to improve but I still have some work to do. Not all but some people will say something about it or say my child is having trouble with articulation as well. My mommy has gotten to where she uses this opportunity to tell my story. Hey you asked so you get the real story. 100% of the reactions so far are I would have never known that if you wouldn't have told me. Look at him, that's amazing!! Speaking of amazing we leave in 2 1/2 weeks to go back to Detroit. God always provides and we are ready for our trip. A wonderful family let us use some of their flight points to schedule our flights. Talk about relieve some stress. I'm so very thankful for this. My Aunt Mendy will be going with us to Detroit now. My dad is going to stay with my brother so that things can stay as normal as possible for him. Our rental car price has gone from $330 to $69 total. Now we wait until the day before to make sure we get into the Ronald McDonald house. I'm not gonna lie. We are nervous about this appointment. The EEG that will be done will give us lots of information as far as my future. We believe its going to be normal but its always a bit nerve racking when you have to have an EEG. By the way this will be my first EEG medicine free. We will also know if I will need surgery on my hand. We hate that I may have to have another surgery but we have to do what is best for me. This surgery will not be nearly as bad as brain surgery. So please begin praying for my trip!! I want to share a video of me using my right hand so you can see how I can use it. I can use it and I try really hard. It makes you sad when I say righty doesn't work right :( The main problem is opening and closing my hand. I have figured out that I can use my left hand to open my right hand and then I can grab things. My hand wants to automatically close so I can grab things. Once I grab it, I have to use my left hand to release it. As far as my left hand, my motor skills are getting much better. I can now draw a circle. I can color, stack blocks, and do much more. I'm leaving a picture of the blocks I stacked at school. I'm so thankful to have therapist at school that send my mom videos and pictures like the ones below. The gingerbread house picture is one of the projects I did with mom since we are off of school. If you look close you can see how well I did. I was able to pick up the little candies to put on the roof. I had a blast decorating it. Other than that we are really enjoying our Christmas break. Christmas was so exciting this year because I got it. I understood every part of it. I knew it was Jesus birthday. I was able to count down the days until Christmas. I sang Christmas songs. I made cookies for Santa. I woke up Christmas morning asking if Santa came last night. It was such a blessing celebrating the birth of our Savior. We are less than 2 weeks away from my 2 year seizure free birthday. Yes you are reading that correctly. 2 whole years since my last seizure. Thank you God!!!

Saturday, November 9, 2013

Detroit details/Adenoid surgery/Modern day miracle!!

Wow! It's been awhile since my last update. First of all I'm still doing wonderful in school. I'm making more and more progress everyday. My speech is unbelievable. I sound so grown up now. I say anything I want to say and you can understand me most of the time. I love to perform and make people laugh. In fact, I had about 4 rows of people laughing at the LSU game the other day. I'm such a clown. I am also learning my letters and numbers. I can identify several letters, numbers, and letter sounds. I can also tell you the beginning sound of a word. It's so amazing to listen to me. I have several friends at school. I can tell you their names as well as all my teachers names and therapist. I'm getting so smart. In other news I have been fighting sinus infection after sinus infection since about March. I get better and then have to be put back on antibiotics. I went for my 2 week check on Wednesday and she said its time for my adenoids to come out. I have a constant sinus drip that is always in the back of my throat. This drip is causing the problems. Once we remove my adenoids I should start feeling a lot better. We also got the news that we have to go back to Detroit in January. We were planning on going this summer but Dr. C, my mom, and dad think its best if we go ahead and go back. I will leave January 18. We are leaving a day early because it is saving us $250 on airfare. We will stay at the Ronald McDonald house when there. I will see my neurosurgeon and January 20. I will then have a 3 hour EEG done on January 21st. I will see Dr. C after the EEG is over. I then have an appointment with a pediatric hand surgeon on January 22. This doctor will tell us if I need to have surgery on my right hand. I will then fly home after the appointment. My mom and I will be traveling alone this time. It's too expensive to fly everyone there. Please begin to pray that we will have a safe trip. Also please begin to pray for my test and all my appointments. The reason we are doing an EEG is to check to see how things are now that I have been off my medicine for almost a year. We are excited to see Dr. C and for him to see how well I'm doing, but we are also nervous about the EEG and the possibility of needing surgery on my hand. If I do need surgery that means we will have to go back to Detroit for this surgery. Also keep me in your prayers this Tuesday as I have surgery to remove my adenoids. It's never easy when you have to be put to sleep. You would think that after all we have been through this surgery wouldn't seem like anything but any surgery makes you nervous. Thanks for your prayers and I will keep you update. I'm leaving you my very 1st school picture. You can see how happy I am at school. This picture means so much to my family. When you are unsure of the future and then later get to see this smiling face going to school you are reminded that you have witnessed a modern day miracle :)

Thursday, September 12, 2013

Pre K update!!!

Wow!! Its hard to believe that we are almost 6 weeks into the school year. I'm doing really well in school. I stay in the regular prek room for most of the day. I'm pulled for 30 minutes when I first get to school and then 30 minutes before lunch in order to work on my IEP goals. I'm also pulled for OT, speech, PT, and APE. All of my therapist are amazed at how much I progressed over the summer. In fact, my PT asked my mom what kind of therapy we did this summer because I am doing so much better with my motor skills. Mom said we just swam all summer. I can't tell you how much swimming helps with balance and strengthening. It has been one of the best things for me. Other than my therapies and pull out times I do things such as centers, circle time, and nap. During centers my special education teacher actually comes into the regular prek room with me and helps me. When we do centers the 2nd time during the day, a para educator helps me go to each center. Circle time seems to be the biggest challenge for me. Believe it or not me the little boy who has the entire left side of my brain gone which contains the speech center is getting in trouble for talking way to much during circle time. I've actually never been taught that I have to be quiet sometimes. I've always been encouraged to talk since I didn't talk for so long. So now we are working on when it is appropriate to talk and when I have to listen. It may take a while but I'll get it. I'm also eating lunch with my peers and doing pretty well. I have my moments but I usually straighten up once I'm corrected. Mom says I'm doing better than she thought. She put me in the prek room all day to start with to see how I would do and I'm staying in there much longer than she thought I would be able to. I lay on my mat for nap time. I have a para in there that helps me go to sleep but I'm taking naps with all the other kids. I'm also doing well with the potty. So far I haven't had any accidents at school. So yes I do have some things I need to do better with but overall I'm doing GREAT and my family is proud of me. Since I'm doing so well overall my mom and dad have to remind their self just how far I've come in such a short time. I mean I just started fully walking 100% of time this time last year. So when you think about that it is just amazing at what I'm doing. Here is a picture of me and my brother on my first day of school. Oh and I almost forgot. I'm not walking with a brace anymore!!! Thank you God for what you have done and continue to do in my life. Love you all, Jadon

Sunday, August 25, 2013

I turned 4 today!!!!

Today I turned 4 years old. I'm sharing a video of me singing happy birthday to myself because I think it shows just how AMAZING I'm doing. I had great day. We had a big waterslide and Mickey and Minnie came to my party. I sure was excited to see them. I had a great day with my family!! I played, smiled, opened my presents, and ate cake. I did pretty much everything a four year old would do on their birthday. We are so blessed and thankful for my progress. Enjoy the video

Monday, August 5, 2013

Through my eyes!!!

Through my eyes the world is a happy place. I smile when I hear the birds and laugh when the wind blows through my hair. Through my eyes I never meet a stranger and I see the best in every person. I see everyone equally no matter what you have or what you don't have. None of this matters through my eyes. Through my eyes I see forgiveness. I've had nurses stick me one minute and then I play and hug them the next. Through my eyes I want to be just like my peers. I will follow and try to do everything you do. So just be patient I'm learning more from you than you know. Through my eyes I have the best brother in the world. I want to be with him and do everything he does. I don't understand when I can't do some things he does but mom says I will when I get his age. Through my eyes I see the importance of smiling and making others smile. I have the best personality and will do anything to get your attention and make you smile. I don't understand why some people choose to ignore me but just maybe I planted a seed in their heart. Through my eyes I love Jesus and I love reading and talking about God before I go to bed. My mom tells me all the time that the world would be a better place if everyone could just see a piece of the world through my eyes. So that is my goal. I hope that everyone can see a piece of this world through my eyes.

Mark 10:15- I tell you truth, anyone who doesn't receive the Kingdom of God like a child will never enter it.

Monday, July 22, 2013

Well check, eye doctor, and 1 1/2 years seizures free!!!

I've been staying busy lately going to lots of Doctors appointments. I went to the allergist last week to get my paper work done to bring my epi pen to school. Well while I was there I had to be put on antibiotic because I had a sinus infection. I have to go back to the allergist this Friday for allergy testing. They are also going to retest to see if I'm still allergic to ants. We are hoping that I'm not and that I will no longer need my epi pen. Once my allergy testing is complete we will go back to my ENT and see if I have to get my adenoids out or not. My brother and I had our well check today. Of course I showed out for the doctor. She was very impressed with my speech. I'm just a chatter box right now. My pediatrician was also impressed at how well and fast I'm developing right now. She checked me out and then let me play with her doctor tools. I told her to open her mouth and I shined her light in her mouth. My pediatrician thought that was funny. I'm such a little ham and am always making people smile. I also saw my eye doctor today. He said my eyes look great. He still doesn't know exactly how much vision loss I have. He said right now it is looking like I'm seeing about half of what I should be. We knew this was a side effect before we did the surgery though. He said as I get older he will be able to tell us more. As of now I do not need glasses or vision therapy. He said we will do vision therapy when I get a little older. He checked to make sure I wasn't color blind and he laughed when he said I'm not because I passed the test with 0 problems. I am able to point to colors when you ask me to point to a particular color but I will not say it when you ask what color something is. I'll get it before long. Mommy said now that she knows I'm not color blind she is going to push me extra hard to learn them. Other than doctors appointments I have just been enjoying my summer. I did get all my school uniforms and supplies. I'm getting excited about school and getting to go with my mommy and Jacob to LES. Thanks for all your prayers. I've made it a year and a half with 0 seizures!!!!!!

Tuesday, June 25, 2013

Neuro appointment!!

I had an excellent appointment today. My neurologist said I'm doing great. She said I'm progressing along wonderfully. She spent about 30 minutes with us talking, asking me questions, and observing. I talked to her the entire time and she noticed how much my speech has improved. She said that she would see us in December just to monitor my progress. I can't explain to you how much joy it brings to us to go to the neurologist and get nothing but good news. Not to mention we love our neurologist at Children's, she has gone above and beyond for us. After my appointment I got to go spend time with my cousins. My Aunt lives in the New Orleans area and she has a little boy and twin girls. I enjoyed getting to swim and play with them. We also stopped at Pizza Man in Covington on my way home. We love that place. If you've never been you should go. You can watch them cook the pizza through the window. I'm leaving you a few pictures of us today. As always, thank you so much for your prayers. Your prayers have helped my family greatly.

Sunday, June 23, 2013

It's tough growing up!!

I'm still enjoying every minute of summer. I've had a couple of appoinments this past week. I went to the brace shop and I no longer have to wear my sure steps. I only have to wear my brace. The sure steps were helping me get my heel down and I'm now able to do it without them. I have to go back in two months to see how I'm doing. I also went to the dentist. He said everything looked great and my brother and I didn't have any cavities. So great news at those appointments. I have gone 4 days and 3 nights without my nunu(pacifier). If you know me, you know that this is a major accomplishment. I was so attached to my nunu. It has been my security through every needle stick, hospital stay, surgery, therapy, doctors visit, etc. It has helped me get through it all so for me to go this long without it is pretty good. I'm not gonna lie its been hard because I have a solution for everything my mom tells me. For example, the dog took my nunu so my mommy told me the dog took it and it was gone. Well I knew I had more than one so I told her I had two of them. She then said she lost the other ones and I said I find one in my playroom. (We always find them there when we lose them.). When we couldn't find one in the playroom, I just told my mom to go buy me a new one at store. All of this while tears are coming from my face. So yes its been hard and mom has cried with me but we are getting there. I'm only asking for it every now and then with no tears. I'm just growing up this summer. I don't have a nunu anymore and I'm potty trained. I'm going to be ready for prek for sure now. Our next thing to work on is finding a way to get me feeling secure on the big potty. My right sided weakness makes it hard for me to use the big potty. We are looking at different seats and stools to use to help with this. We will figure it out. For now we are satisfied with me being able to use my little potty and that I'm telling someone when I need to go. I've also been working on using my right hand. I'm working very hard and I'm able to use it as an assistant hand in order to help me string large beads. I'm also working very hard on naming the letters of the alphabet and their sounds. I can name 8 letters and I know 17 sounds. Oh and I'm able to jump now. I can't jump very high, but I can get off the ground and I love to show people that I can jump. I have a neurologist appointment at Children's Hospital in New Orleans on Tuesday. Please pray that I will have a good appointment. I can't wait to show my neurologist all my new tricks. I'll update you after the appointment. Love you, Jadon

Monday, June 3, 2013

Potty Training 101

My mom has been potty training me for a week now. I am proud to say that in that week I only had 4 accidents. 2 were #1 and 2 were number #2. For the last 3 days I have been going number 1 and number 2 on the potty with 0 accidents. This includes nights as well. I haven't had any accidents at night all week. I even get out of the pool when I have to go. My mom isn't ready to say I'm fully potty trained just yet, but wow I'm pretty close. My family can't believe how well I'm doing with this. It's been much easier than they thought for sure. Me I don't really see the big deal, when I have to go I just tell them. You have to remember this time last year I wasn't walking 100 percent of the time and one year later I'm not only walking and running but now I'm almost potty trained. Wow isn't that unbelievable!!! Thank you God for what you have done and continue to do in my life!!!!

Thursday, May 30, 2013

More good news!!!!

It's officially summer and I am loving every minute of it. I get to spend everyday with my mommy and brother Jacob. We go swimming almost everyday. I love it and its great exercise for me. We are really focusing on getting my right hand to work better this summer. I'm trying really hard but its just not cooperating. The good news is I have a great attitude about it and I always try. I will get it eventually. My mom is also working on potty training me this summer. We are on day 3 and I haven't had an accident in two days. I was able to go to wal mart, master chef, and to Jacob's t-ball game in my big boy undies. I'm really excited about being able to wear my undies and my family is very proud of me. We are hoping by the end of the summer I will be able to go to school fully potty trained. Speaking of school we received a letter in the mail today saying that I was selected to participate in the PreK program at Loranger Elementary. We are very excited about this. I will be in a regular education prek class. Right now I'm learning so much from my peers so we know this is going to be a great thing for me. As always thanks for praying for me. I'm doing fantastic!!! Love, Jadon

Tuesday, May 7, 2013

Great News!!

My mommy talked to my neurologist in Detroit today. They decided that I do not have to go back to Detroit this summer. I'm doing so well that he said we can wait another year before we go back. The main reason we were going back was to let him evaluate my hand. I'm still not using it as much as we would like but I can use it and will use it when I want to. So we will wait another year and see how I'm doing then. We just aren't ready for surgery yet and feel like we should just wait. In the meantime my neurologist said to let him know if we have any problems in the next year. Thank you all for your prayers. We are very excited that I'm doing so well and can skip this trip.

Saturday, May 4, 2013

Phenomenally Well

So I've been off my medicine for almost 3 months now. I continue to do great and I'm still progressing along. A few weeks ago I was in my Uncle Mark and Aunt Laurens wedding. I walked down the isle with my big brother and did exactly what I was suppose to do. Mommy was so proud of me for being a big boy like my brother. I had my evaluation for pre k a few weeks ago. I did better than my mom thought I was going to do. The lady asked me my name and I said Jadon, she said Jadon who? and me with my funny self said Jadon bug a roo. LOL That's what my mommy calls me. She then said that's not your last name what is your last name Jadon what and I decided I should tell her Pailet. So I was able to tell her my first and last name and my age. I was able to identify every picture she ask me to identify except a leaf. It was a funny shaped leaf and it didn't look like the leaves around here for sure. There was a picture of a girl at the bottom of some stairs and a boy at the top of those same stairs. The lady asked me what the girl was doing and I said going up the stairs. She then asked me what the boy was doing and I said going down the stairs. Yeah I'm a smarty pants. I also had to identify some body parts and I was able to identify them all. They were tricky ones like the heels of my feet, my back, my chest, and my chin. I still got them all right. She asked me things like what does an airplane do and I said fly in the sky and what do you do with a book and of course I said read it. I also had to look at a picture and say the sentence that the tester told me. And guess what, I was able to do it. So pretty impressive. These are a few things I had trouble with. I was able to draw a straight line but not a circle. I was able to identify 2 colors and not 4. I'm having trouble with my colors for some reason. We are actually going to check to see if I may be color blind. I also couldn't hop on 1 foot or jump. If you really think about most the things I had trouble with it was motor related. That is because the right side of my body doesn't work as well as it should. Oh and remember I haven't been walking a full year yet. So basically I'm doing phenomenally well. I'm asking that you all pray I get into prek. I really need it for the social aspect and I'm ready cognitively. Mom is a little worried I'm not because I did well on my test and its income based and since my mommy and daddy both work our income is higher than most. I do get points for having an IEP and they have to take 2 kids with special needs so I'm hoping I will be one of the 2. My speech therapist at school also did a speech evaluation on me and I scored 2 years 10 months receptively and 2 years 9 months expressively. My age is 3 years 8 months. If you remember my expressive was much lower than my receptive and it has caught up!!!! WOW before long I'll be on level for speech I'm catching up in time :) Other than that we are just waiting to get our date to Detroit. We should have our final date by the end of next week. Thanks for praying for me God continues to amaze us with his healing powers. I've heard people say you don't know how much God has blessed you and all mommy says is YES We DO!!!! Watching your child suffer for two years and not being able to help them is horrible and something my mom doesn't wish upon anyone. We are grateful everyday for the miracle God has done in my life!!! I'm attaching a cute video of me running in my shoes without a brace on. You can just see the joy everywhere!!!!

Monday, March 25, 2013

Epilepsy Awareness!!

Epilepsy awareness day is tomorrow and I'm asking all my friends and family to wear purple to support epilepsy awareness. I'm so thankful that I no longer have epilepsy but as all of you know epilepsy has left its scar on me. I will never have 100% function of my right hand because I no longer have my motor cortex that controls movement on that side of my body. This is all side effects of my brain surgery that I had to have to save my life. We will never complain because we are truly grateful that I'm no longer having seizures daily. Oh and I can tell you that I give the best one handed hugs around :) I pray that one day there will be a cure for epilepsy so that none of my friends have to suffer another seizure. Until then I will do my best to tell my story and to spread epilepsy awareness. Thank you all so much for your support. I love you all!!! Jadon

Monday, February 25, 2013

No meds and doing awesome!!

Well I've been off all my seizure meds for a week and half. I continue to do great. I'm actually progressing even more since we started the wean. The main two areas that have improved since being off the meds are my attention span and my speech. My attention span has slowly been getting better but now that I'm off the meds I can attend to a task for longer periods. My speech has also improved greatly in the past 3 weeks. I'm now saying sounds more clearly, I'm using pronouns, I'm saying longer sentences, and I'm able to verbally tell you what I did at school and therapy. A few other new things that I'm able to do now is I can do knob puzzles, I can stack 10 blocks, I can identify a circle, square, and triangle, and I can go get objects that are the color you tell me to get. I can count to 20 now and I know the letter sounds for a,b,c, and d. Don't forget I'm only 3 and I had hundreds of seizures a day for almost 2 years so for me to be doing these things is so amazing!!!
Many of you knew that I went on my grant a wish trip over mardi gras break. I had so much fun with my family. It was a much needed get a away for my entire family. I want to thank the Louisiana State Police for granting my wish and sending us to Walt Disney World. My mommy made a video that I'm attaching in case you want to watch it. I hope you enjoy it and thanks for always praying for me!! Jadon

Monday, February 18, 2013

Neurologist Appointment

I had an appoinment with my neurologist today. I haven't seen her since September. She said I looked great. She understood almost everything I said. She was very impressed with how well I was speaking. She said the things I'm saying are very intelligible. The problem is an articulation problem but she is NOT concerned and said I will eventually get it. She said I've only been talking for a year now so its impressive that I'm speaking so well. She also said that I do not have to have any more test for a long time.Praise God!!! She was glad to hear that I'm finished with my meds and she thinks I'm going to be just fine. We have to go back in 6 months which is around the same time I have to go back to Detroit. So for the next 6 months I'm going to enjoy not having to go to the doctor, not having to take meds, and not having to have any bloodwork or test done. Please pray that I will continue to do well off the seizure meds and please thank God for what he has done in my life. We never thought there would come a day when I didn't have to take meds and just look at me today. A true miracle:)

Friday, January 18, 2013

Great News!!

We got our official EEG results today. After further evaluation they are not even concerned about the original possible spiking that they saw at first. So my EEG was fine and we are going to wean me off my last seizure medication. Oh what a glorious day this is...wow I thought I would be on seizure medication for the rest of my life. Please pray for me as we start this wean. We do not want any seizure to start. We really don't think they will because I have recently gain 12 pounds and have grown over 4 inches. So I'm not even on the correct dose of medication for my height and weight. This means the medicine probably isn't doing anything anyway. It will take about 2 months before I'm completely off the medication. Thanks for your prayers and thank God for this day that we never dreamed we would ever see!!! Love ya, Jadon

Thursday, January 10, 2013


First of all my EEG showed that I am not having any seizures. Praise GOD. My doctor did say my EEG is kind of confusing. I'm going to do my best to explain. First of all my background is normal and she isn't concerned at all. She said this is very good. There also isn't any slowing except for when I'm going to sleep. This is also very normal. She said overall my EEG looks great. Now for the confusing part. There is a small area that is spiking ever once in awhile. So what does that mean? Well it can mean two things. It could be absolutely normal. She said I could hook anyone up to an EEG and it could show some spiking. Some people have natural brain waves that just do this. The problem with me is that there is nothing to compare it too. If I had my left side we could look at the brain pattern and know if it was normal or not. So what are they going to do about it. They have to pull my EEGs that were done before my surgery and compare it to that EEG. They still don't know if that EEG will help because I was a lot younger then and brain wave patterns change as you get older. They are also going to look at my PET scan. If you remember there was an area of concern on my PET scan that was done in Detroit. We are not concerned about that area because I'm doing so well. If the area from the EEG and the PET correlate then we will know that it is possible an epileptic area. If not we will know it is not. I hope I explained it well enough for you to understand. When your talking about the brain things get complicated. The good news is I AM NOT HAVING SEIZURES and they DID NOT see any seizure activity during my EEG. As far as the medicine goes we are going to wait and see what the final findings reveal. We are also going to send my results to Dr. Chugani. He studies EEG with people with hemis all the time so he will probably know right away if this is a concern or not. I actually feel like making an appointment with him and flying to Detroit to discuss everything but that's just not possible right now. Overall we are pleased with the results we got and are excited to say I have been seizure free for 1 entire year today. I hope to see everyone this afternoon at my seizure free celebration!! We are asking that you continue to pray for me and that you thank GOD that I am seizure free!!! I'm leaving you a picture of me during my EEG. I was such a good and happy boy!!!

Sunday, January 6, 2013

Prayers Please!!

I will be admitted to the hospital this Tuesday, January 8. They will hook me up to the EEG machine for a 24 hour EEG. This EEG is very important. It is the EEG that will tell us if I can stop taking my last seizure medication. I can not believe that I may be able to get off all seizure medication. I thought I would have to take seizure meds for the rest of my life. Its an amazing feeling to know that I have made it so far. Though we are excited about this EEG we know its not going to be fun. I do not like staying in one place. I use to sit in the bed and play with mommy before I could walk. Now that I'm walking my mommy doesn't think this is going to be easy. So please pray that I will leave the equipment on and that I will cooperate for my testing. The main thing I need you to pray for is that I will have a normal EEG for the entire 24 hours with no spiking and no seizures. We don't expect it to show anything but there is always fear when you have to go in for testing. Thanks for your prayers and I will keep you updated while in the hospital. I also want to remind everyone about my 1 year seizure free celebration. It is this Thursday, January 10 at 5:30 at the Baptist Church in Amite. I hope to see you there!!! Love ya, Jadon

Saturday, January 5, 2013

1 year ago today.

1 year ago today my mom laid me on the operating table to start the first of my two brain surgeries. This was the surgery where they put the electrodes on my brain in order to see exactly where the seizures were coming from. The surgery went well and I went to the PICU. It then turned into the worst day of my life. They had held my seizure meds and I was having lots of seizures. They were the worst seizures my mommy and daddy had ever seen me have. Not only was I having seizure but my mommy couldn't hold me. I had way to many wires coming from my head plus I had just come out of surgery. All she could do was lean over my bed and put her head as close to me as possible. Its a feeling my mom will never forget. It was honestly the worst thing we have been through as a family. Its so hard when your child is in pain and there is very little you can do. My seizure got so bad that the doctors immediately said they had enough information and to put me back on my seizure meds. For the next couple of days I stayed sedated most of the time. If I was awake I was having seizures, crying, and in lots of pain. It was at this point that we were wondering if we made the right decision. I can tell you 1 year later that it was definitely the right decision. I'm attaching a picture of me right before I fell asleep and we walked to the operating room. I'm sticking my tongue out to show them what I think about it.

Love ya, Jadon