The Scar I Wear

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This picture is the scar that I wear everyday. Luckily I have lots of thick blonde hair to cover it up. It is the scar that saved my life. We were hoping that it would be a little thinner than what it is, but we are actually very thankful for this big ugly scar. It is the reason I am able to talk today. The reason I can walk. The reason I can learn. The reason I can develop. The reason I am alive and healthy. It is the scar that was made to remove half of my brain in order to give me life. Today is my 2 year seizure free birthday!! It has been 2 years since this scar was made. 2 years since my parents brought me to that operating room, turned everything over to the surgeons, and sat and waited with faith that I would never have another seizure. 2 years ago this was a very painful,sad, stressful, but hopeful day. A day that didn't seem real. A day that we wish no one had to go through. Today 2 years later, we celebrate with joy. The last seizure we have seen was on my way to the operating room 2 years ago. I couldn't go more than a few minutes with out any seizures before my hemispherectomy. And now today I am 2 years seizure free. Shout to the Lord for He is good. Thank you all for your continued support and prayers. We love each and every one of you and are so grateful to be able to share my story with you. You have all been apart of my healing process with all of your prayers and support. Here is a video that my mom made of my progress this year. I hope you enjoy it.

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!!!

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 :)

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

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

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.

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!!!!!!