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 31, 2012

2012-My Miracle Year!!!

Well today is the last day of 2012. 2012 has been the hardest but most rewarding year yet. It was the year that I received my miracle. I knew ever since the day that I was diagnosed with Infantile Spasms that the time would come when I would be seizure free. Well 2012 was that year. It was a long process. I really had to trust in God and follow him. I told God I don't need little signs, I need big ones and sure enough he gave us huge signs and led us to the doctors in Detroit. The doctor who immediately said that he could stop these seizures. I couldn't believe my ears. You mean you can make these stop after all this time. Some thought it was crazy. How can you let someone take out half your brain. When I look back and really think about it, I think wow how did I have the strength, how did my parents have the strength. All I can tell you is God gave us that strength and peace of knowing we were making the right decision. Doctors told me I would live a better life and not have to be in hospitals. If they would have told me what I would accomplish in just one year, I wouldn't have believed it. Just this year my miracle year I have learned the following things:

1. I'll start at only 2 weeks after surgery. 2 weeks- I regained all but 3 of my skills prior to surgery.

2. 3 weeks I was saying 18 words and scooting around the house on my bottom.

3. 4 weeks I was giving high 5s with my right hand.

4. 2 months- I was walking in my walker. I also went back to Detroit and got my first normal EEG ever.

5. 3 months-I started taking steps all by myself something I had never done before.

6. 4 months- I was having conversations and saying over 100 words. We took away all communication devices.

7. 5 months- I started to sing the ABCs.

8. 6 months- I got to go the Hemi conference and meet lots of hemi kids. I also had a MRI that said everything looked great.

9. 7 months- I started walking longer periods of time but would still scoot some. I
also started pushing up to stand.

10. 8 months- I turned 3!!!

11. 9 months- I walked up stairs and was walking 100% of the time.

12. 10 months- I started my new therapy and was able to walk down steps.

13. 11 months- I learned to count to 15.

As you can see 2012 was very good to me. Imagine being told by the doctors that they didn't know if you would ever walk, talk, or be able to live past your 10th birthday. As you can see I have learned to do all those things in just 1 year. Its so unbelievable and I know that I couldn't have done it without God and without all of your prayers and support. I can not wait to see what 2013 brings. I love each and every one of you and look forward to my 1 year seizure birthday 1-10-13.

Tuesday, December 18, 2012


I had my appointment with a new office that makes AFO braces. My mommy and I really liked this place. The picture above shows the new brace we are looking into getting for me. This brace will help me walk heel to toe since my foot wants to drop. It will also help with my knee and positioning it. It basically helps improve the entire gait. We will use the insert above to help keep my foot in the right position. My foot wants to lift up and this piece will help keep it down. This is what is giving me lots of problems with my old brace. My foot wants to pop out of it. This will keep my foot down. If you look at the insert,you will also see that my toes are open. This gives me more use of my toes. The other great news is that I will be able to order the walking shoes that go with the brace. You all know how much trouble my brace has given me and how much trouble it has been to find the right shoes. We were very excited that we could order everything here. I was able to try the brace with the insert and the shoes on in the office. It wasn't quit the right size but my mommy liked the way I was walking in it. We are hoping this is the answer to our brace problems. We now wait and see if insurance will approve it. I will keep you all posted.

Thursday, November 22, 2012


Just wanted to tell everyone I hope they have a great Thanksgiving. I have so much to be thankful for this Thanksgiving. I was reminded of just how generous all of you have been to me through all of this. This time last year you were cooking turkeys as we prepared for my surgery. It's getting really emotional the closer it gets to my 1 year of seizure freedom. All of the feelings are coming back as we remember all that we were doing to prepare this time last year. I would never have believed that I would be walking and talking so soon. God had bigger plans than we could have ever imagined. So yes we are extremely thankful this year. We realize just how blessed we are. I'm walking better each day and I can now say up to 7 words at a time. I do not use 7 words very often but I can do it. Please remember all my friends who are still having seizures everyday. It's way to many and I pray that one day there will be a cure for epilepsy so they do not have to suffer anymore. To all my friends out there still having seizure don't think you haven't gotten your miracle because every one of you are a miracle. Love you all and Happy Thanksgiving!!! Remember to thank God for all the blessing in your life :)

Wednesday, November 7, 2012

A few new things!!!

I have a few new things to tell you. First of all my mommy found a place that does lite gait treadmill training. This is the therapy that she learned about at the hemi conference that is suppose to be really great for hemi kids. We are hoping it will help me walk more smoothly. I'm also going to be doing a therapy called suit therapy. This is a therapy where they put a suit on you with bands. They use the bands to train the muscles to work correctly. Kinda neat. You can google suit therapy and read more about it if you are interested. We are very excited about these therapies. We will have to travel to Mandeville to get them but if it helps it will be worth it. The other new thing is I got my dates for my 24 hour EEG. I will be admitted on January the 8 and then released on the 9th. Please begin praying that we will get great results from this EEG. If this EEG is clear, I will get to begin weaning off the last seizure medicine I'm on. Yes I will be medicine free for the first time since I was 4 months old. Thanks for praying for me and I love you all very much. Oh and guess what? I will be 10 MONTHS seizure free on the 10th. Thank you GOD :)

Saturday, October 27, 2012

WOW!!! A much needed update!!!

Ok so I can't believe it's been two months since I updated my blog. I'm so sorry for not updating sooner. Our computer was broken so we had to get it fixed and its very hard to update from a phone. So let me catch you up. A lot has been going on in the last 2 months. First of all I did get my early steps evaluation back shortly after my last post. It showed that I'm progressing very quickly. In fact I'm progressing more than average. Mom says I'm making up for lost time. I've also been going to therapy at school with mommy. My therapist are great and I love going to school with mom. I continue to make progress developmental. I'm walking everywhere now. I do not scoot anymore. I can walk with and without my brace. I do walk much better with my brace but I can do it both ways. I can push up to stand. I can kick a ball while standing. I can bend down and pick something up off the ground. I can also carry something around while walking. I can't quit keep up with my brother yet but I do a pretty good job of keeping up with him. Just this week we went to trunk or treat at my moms school. Well I walked and followed my brother the entire time. It took us 30 minutes to walk through all the tables and cars and well I did it. I walked the entire time. My mom was overfilled with joy. My dad and her love to watch me be able to participate and have fun doing things now. It's so amazing to watch me do the things we didn't know if I would ever be able to do. Speaking of amazing my speech is just awesome. I improve everyday. The other day I told someone thank you for bear. It's so unbelievable to watch me. People who haven't seen me in awhile are just in awe of what I'm doing. Life without seizures is awesome. I don't want to say this too soon but I'm going to. The last time I was in the hospital was right after my surgery. I have gone 9 months without being hospitalized. I've never been able to do that. I can't explain how different our lives are now. We have truly been given a new life. Yes we still have our struggles but things are a lot better. So this is a few things coming up. I have my EEG in December. If everything looks ok which we expect it will I will be weaned off my last seizure medicine. Can you believe that? I never thought we would see that day. We are also getting ready for my grant a wish trip. We will leave to go to Disney World February 10. We are super excited about this trip. We can't wait to get away and enjoy some family time together. The main thing I can tell you through all of this is that God has been right beside us and blessed us more than we could have ever imagined. We are getting close to my 1 year seizure anniversary. We plan on having a big party. I will let you all know details at a later date. The party will be January 10 which was my 2nd surgery date. It was also the last day that my mommy and daddy saw me have a seizure. At the party we will have a prayer of thanksgiving. We will then have cake and punch. Specific details will come later. Ok so I promise I will do a better job of keeping you updated. Please continue to pray for me and I love each and ever one of you. Here is a pic of my brother in our Halloween costumes.

Sunday, August 26, 2012

I'm 3!!!

Things have been going really great. I'm still walking more and more. I continue to progress with my speech daily. I'm also using my right hand more and more. I had my early steps age out evaluation and I did extremely well. I do not have the results yet but I will let you know when I get them. We had my IEP with the school system Friday. I will be going to Loranger Elementary with my mom on Monday,Wednesday, and Fridays from 8:00-9:30. I will get speech twice a week, OT twice a week, special instruction 3 times a week, and PT and APE once a week. We are extremely happy with the services I got. I will also have wonderful therapist that are going to be working with me. We will miss my early step therapist though. They have been with me for a very long time. Guess what? Yesterday was my birthday. I turned 3 years old. It was a great birthday. My Uncle Mark and Daddy brought me down the big slide and I loved it. I was also able to blow out my candles. This was a big deal because I've never been able to blow out my candles. I had lots of fun with my family and cousins. It was so nice to be able to enjoy my birthday with no seizures. I'm leaving a few pics so you can see how happy I was yesterday. Everyone stay safe. We are preparing for Isaac but hoping for the best. Love ya, Jadon

Tuesday, August 14, 2012

Neuro results and I got my new brace :)

Things have been going really well since mom went back to work. I've been a good boy and I don't cry when she leaves. I do stay right by her when she comes home though. We are in the process of scheduling my IEP meeting so I can go to school when I turn 3. We are not sure when and how long I will go but I'll let know when we find out. I do know that I'm going to go to MMO on Tuesday and Thursday. We stopped by and saw Ms. Pat(my teacher)this morning before we went to my appointment in NOLA. My appointment went great. She said that I look fantastic. We do not have to see her again until December. In December we will do a video EEG and send it to Detroit. As long as it looks ok then we will wean me off my Vimpat :) So we had a great appointment but we are going to miss getting to see my neurologist. She has become very special to us. After my appointment we went to the brace shop. I finally got my new brace and you aren't going to believe this but I'm walking,walking,and walking some more. So after waiting two weeks with no brace, I just picked right back up. In fact I'm doing better than before. I took 58 steps tonight. I'm also walking just because I want to without anyone telling me. My mom walked out of her room this afternoon and I was walking down the hall. This made her so happy :). I'm doing so well and I continue to make huge progress each week. Thank you all so much for praying for me!! Love, Jadon

Friday, August 3, 2012

Getting ready

Yes we are getting ready for my mommy to go back to work Monday. She has been off for 8 months with me. She is not looking forward to going back to work. She wants to stay home and teach me and do therapy with me. She said though she doesn't want to go back she is very thankful that she was able to stay home with me for 8 months. She couldn't have done it without all the generous donations from all of you. So from the bottom of my heart thank you all so much for allowing her to be here with me during my recovery. I can't thank you enough for all you have done for me and my family. I also have a few new things that are fixing to happen. In 3 weeks I will turn 3 years old. We are not excited about this because I will no longer qualify for early steps. My early steps therapist have been coming to my house since I was 7 months old. They have become a part of our family and we will miss them so much. They have helped me progress and helped teach my mommy all about therapy. Again we will miss them very much:( So what am I going to do for therapy? I will start going to therapy at Loranger Elementary for a few days a week. We do not know how long or what days yet. I will keep you all posted when I do know. The good news about this is my mommy knows all the therapist there and they are all wonderful. I know they will do a great job picking up where early steps left off. I will also get to go to MMO at the Catholic Church in Amite. MMO( mother's morning out) is a great program for toddlers. I will go there Tuesday and Thursday mornings from 8-12. This will be great for me to be around other toddlers. Many people are asking who is going to keep me when mommy goes to work. Well my MiMi(my daddy's mom) will keep me on Monday and Tuesday. My Aunt Mendy will keep me Wednesday, Thursday, and Friday. So I will be with family during the week. Please pray for me during all these transitions. I am a momma's baby and I am attached to all my early steps therapist so we are not sure how I'm going to handle all these changes. I'm sure I will do great!! Just a quick update on development. I'm still doing really well. I'm not really walking much because I'm having brace issues again. My brace is just too small. We did go to children's yesterday and they casted me for a new brace. Hopefully we will get it in the next 2 weeks. Until then I'm afraid we are not going to see much walking. I need that brace and I need the support. That's why mommy went and sat a children's without and appointment so they could fit me in yesterday. My speech continues to improve daily. The other day I went to my dad and said daddy nunu car outside get it. So yes I'm getting my point across. I'm also improving play time. I understand how to play with toys and what to do with them. I can play with a toy for a long period of time. I'm doing well with my constraint therapy. I'm using my right hand alot more. This is very encouraging. Please say a prayer for my friend Connor who is having lots of seizures and fixing to start some new therapies to try to help. Also pray for baby Kingston and Jocelyn. They both just had hemi surgeries and need our prayers. They are both doing well but are both still in the hospital. Thanks for all of your prayers! Love ya, Jadon

Tuesday, July 24, 2012

Today's results

Today's appointment went really well. Dr. C said that my language and cognitive skills are just great. He said we just have to work on the physical part. Though we have to work on it, he said my physical abilities have come a long way from when we started so he was very pleased with my progress. He was very excited I was walking and he said my physical ability will keep getting better. He also said my right hand was tighter than he wanted it to be. He said I do have good function of the hand but he wants more bc he said I have the ability to do more with my right hand. He wants us to tie my left hand up for an hour a day and force me to use my right hand. He wants us to make this a game and make it as fun as possible. We don't want me screaming the entire time or we will not make progress. He also wants us to do lots of stretching. He said that what happens is the brain starts to neglet the effective side. The brain I have was not made to move the right side so it will begin to neglet that side. We have to make me use that side so this doesn't happen. He said he wants to see us back in a year so he can check my right hand out. He said that if it continues to get tight then I will have to have surgery on that hand. So our goal this next year is to really work on that right hand. He also wants me to have a VEEG in January at Childens in NOLA. We will then forward him the results and if it looks good he will take me off my seizure Meds. So exciting, I didn't think that day would ever come. So overall great visit with lots of good information. Thanks for all your prayers and please remember us as we travel home tomorrow!! Talk to ya soon!! Jadon

Monday, July 23, 2012


It's been all great news today. They had to sedate me for my MRI. The nurse read in my chart that I was a hard stick for an IV so they put me to sleep using a mask and then started an IV. Of course I hated the mask but I fell asleep very quickly. It was much better than having to start an IV first. I then went for my MRI and then to recovery. I did great waking up and immediately started eating crackers and drinking. We then went upstairs to see Dr. Sood. He pulled up my MRI on his computer screen to show us. He said everything looked great and that it is very unlikely that I will ever need a shunt because there is no fluid build up. He also said I'm doing very well. He was amazed at my speech and how alert I was. He said that i have great function of my right hand. Of course I was showing off for him. He held out a pen and I reached out and grabbed it and held onto it immediately with my right hand. I also kept saying I walk and was walking all around the room. He said he would see us in January when we come back for our yearly checkup. Thanks for your prayers and I let you know what Dr. Chugani says tomorrow :)

Sunday, July 22, 2012

We made it :)

We made it to Detroit. It's been a long day. I woke up a 3 this morning with a tummy ache so we have been awake since then. I'm much better now thankfully. My mommy was worried we wouldn't be able to come but we are here and I did great on the flights. We were able to get a room at the Ronald McDonald House. They originally told us they were full but a family left today so we got in. God always works things out. The staff here is awesome. They remembered us and wanted to know all about my progress :) Today as we were walking through the hospital to get back to the house all of a sudden all these memories started coming back to my mom. The late nights of walking back to the house as she left me with my dad so she could rest some. It's just crazy how all those emotions and fear come back just being here again. I have my MRI tomorrow so please be praying for me. If you would like, it would be a good day to wear your purple shirt so you can remember me all day. I'll keep you posted. I have to say it's kinda nice to be at the place that saved your life. I'm very excited to see my doctors and show off my tricks. Thanks for the prayers. Talk to ya soon!! Jadon

Thursday, July 19, 2012

Prayers Needed!!!

We are getting ready to leave for Detroit this Sunday. I have an MRI Monday and then an appointment with Dr. Sood (neurosurgeon) that afternoon. Please pray that everything goes well. I will have to be put to sleep for my MRI and that worry is always there every time I have to be put to sleep. This will be the first time I have been put to sleep since my surgery. This will also be the first MRI since surgery. I have had two CT scans but not an MRI yet. Please pray that we get good results. We are expecting to get great results since I'm doing so well. So Monday is the day I really need you to be praying for me. I will then see Dr. Chugani Tuesday. We can't wait to show him and Dr. Sood all my tricks. Especially all my new walking I'm doing. Yes I'm up to about 12 steps now. Getting better everyday!! My mom was writing down everything I've been doing lately and its really impressive. I am using about 130 words consistently on my own. These are the words that I say everyday or at least every other day. As far as how many words I can say. I can't give you a number because I try to say every word you ask me to. I will say that I can repeat at least 300 words if not more. I could ONLY say 10 words 6 months ago. That is totally amazing!!! I'm also following 2 step directions, can count to 3 and then finish with 8,9,10. I can say several letters of the alphabet when you sing the song, I can sing rain rain go away, and am walking. Wow what a difference the past 6 months have made. We are so thankful for surgery and for Dr.Sood, Dr. Chugani, and their team at Detroit Children's Hospital. When you pray for me today please thank God for what he has done in my life. I will keep you all updated while we are gone. Thanks so much for praying for me!!! Jadon

Monday, July 9, 2012

Hemi Conference

So we made it to Baltimore and back. We had such a great time. We met lots of new friends. We got to meet Charli and her mom. It was so awesome being around other kids and families who have gone through what we have. They totally understand you and really know what it is like to go through this surgery. We went to the conference to learn but we came back full of new information and lots of new friends. I stayed in the kids camp while mom listened to the speakers. I played ball the entire time. The teenager who was helping talked about how well I can throw a ball. I just love playing ball. After mom listened to the speakers each day, she took me swimming. This was my favorite part of the trip. I just love getting in the pool. I'm leaving you a picture of my mom and I at the conference. I hope next year we will be able to take my daddy and brother. I am very blessed to have been able to attend this year. It's because of people like you who have helped our family out during this time. By attending this conference my mom was able to learn about all the new research and therapies that they are doing for kids post hemi surgery. She will be able to help me reach my maximum potential with all the new things she learned. We are also hoping to be a part of some of the new research therapies they are doing. I just have to get a little older first. I can't thank all of you enough for helping me have the opportunity to attend this conference. It was an awesome experience!!!

Tuesday, July 3, 2012

We are headed to Baltimore!!!

Yes we are going to Baltimore this Thursday. My mom and I will be traveling by ourself. My mom decided that I really needed to go to the hemispherectomy conference they are having there this weekend. They are going to give us lots of information and things to do post hemi surgery. It's information that we just can't get around here. We are very excited about this trip. The best part is I will get to meet some of my online friends. One being my friend Charli and her mom. Some of you probably remember who Charli is. She is the little girl who had her hemispherectomy before me. I posted her story on my blog so that you could see what I was fixing to go through. I'm very excited to finally get to meet her and her mom. They have been so helpful to us. I will also get to meet lots of families who have experienced hemi surgery. It should be an awesome conference. I will definitely let you know how it goes. Please pray that we will have safe travels and that we will learn lots of new things so that my mom and dad can help me reach my maximum potential :) In other news, I continue to make huge progress. Of course my speech is getting better and better each day. I can have a small conversation with a stranger and they can understand me. I'm really into learning to sing songs right now. I'm trying to say my ABC's and I can say several letters. Some of my other favorite songs are the ants go marching, the itsy bitsy spider, and of course the wheels on the bus. We are trying to learn songs that have hand movements that require both hands. Just a fun way to practice using my right hand. I did have to go to the brace shop yesterday. Guess what? I'm outgrowing my brace already. I have only had it for 3 months. It is suppose to last 6 months to a year. The lady at the shop fixed it to last until August. In August she said I will have to get a new brace. The bad news is I have been complaining about the brace since we got home yesterday. I keep saying ow ow until my mommy takes it off. This is not good for my walking. We are going today to try and get me a new pair of shoes. Hopefully that will help me get through next month. I'm leaving you a pick of me playing a chuck e cheese. This is a great place for therapy. I wish we could go there once a week :) Thanks for all your prayers and I will let you know how the conference goes!! Love ya, Jadon

Sunday, June 17, 2012

Enjoying Life!!!

Right now we are just enjoying life. We have cut back on some of my therapies. Just remember my mom does therapy with me all throughout the day so its ok that we cut back some. We are trying to relax and enjoy our summer. My RaRa took us to the beach this past week. I had such a great time. I just love the beach, the sand, and the pool. I even got to play putt putt golf and ride the go carts. I was just tall enough to get to ride them and it was definitely one of my favorite parts of the trip. I left some pics for you to see. As far as development, I continue to make progress each day. I just made 5 months with no seizures. It's hard to believe that 5 months have passed. The progress in those 5 months have far exceeded what we originally expected. You see God had a plan that was greater than what we could ever imagine!!! Please continue to pray for me and that I will remain seizure free. Also please pray for my friends who are still having lots of seizures a day. Especially my friend Connor. He just started a new medicine and it is helping so please pray that the medicine will continue to help his seizures. Also begin praying for my trip to Detroit. It is a month away. I will have a MRI while there to check everything out. Thanks for all your prayers. Love, Jadon

Saturday, June 2, 2012

Doing great and an awesome surprise!!!

I'm still doing amazingly well. I'm using my right hand more and more. My mommy makes me use it throughout the day. One of her favorite ways to practice is at walmart. She makes me hold on to the buggy with my right hand. I do it every time. I continue to make huge gains with speech. I told my mommy the other day "Momma I want french fry." Yes that is a 6 syllable phrase. I say little phrases like this ever now and then. It's not clear but very understandable. When we go out in public others are able to understand what I'm saying. The words that I've been saying for a long time are as clear as can be. My speech continues to improve and amaze my family daily. I've become very demanding. I know what I want and what I want to do. It's hard to take me out to dinner and places like that. I want to be down and going. You know typical 2 year old stuff. My family is actually excited that I'm a handful. It's something we waited for a long time. I started doing something that my mommy still does not believe. I woke up one morning and said pee pee. She took me to the potty and I went. Since then I go to the potty 2 to 3 times a day. I have also gone #2 on the potty twice. I understand what to do, I just have to work on the control part. It's unbelievable that I have that much cognitive skill to understand this concept. My mommy wasn't even trying to potty train me and I started on my own. UNBELIEVABLE!!!! I can't even describe the cognitive skill gains that I've made since surgery. It's just something you have to see for yourself. Everyone that sees me notices it right away. I understand everything!!! Praise GOD!!!! I added the link to the interview that Fox 8 did to my blog. Fox 8 did a great job putting this interview together. Its a must watch if you missed it. I also added the two videos my mom made for me if you would like to watch them. I got some super exciting news this week. Troop L with the Louisiana State Police has granted my make a wish. I will get to go meet Mickey Mouse with my family in October. We are super excited about this. Thank you so much Louisiana State Police!!! Well that's about all. Life is great right now. I'm reminded of the lyrics "the pain that you've been feeling can't compare to the joy that's coming!!!" Two years my family watched me suffer through all these seizures a day so yes the joy that we have right now it great. Thank you God for everything. We will continue to be faithful to you and trust in your plan!! Please continue to thank God for taking my seizures away and continue to pray that I continue to progress so well!! Love you, Jadon

Tuesday, May 15, 2012

Mother's Day Get Away

I don't know where to begin. I haven't updated in so long and I'm making amazing progress. First of all let me tell you the best news yet. I'm 4 months seizure free. Wow I can remember when I couldn't go more than a few minutes without having a seizure and now I've made it 4 months!!! Praise God!!! I had an evaluation done the other day with the school system. When I turn 3 I will no longer be able to recieve therapy through early steps. I will have to transfer to the school system. I know I will have great therapist at school but I'm really sad about having to leave early steps. I have wonderful therapist who enjoy working with me. Mommy loves to listen to them play and laugh with me. I'm so blessed to have each one of them to help me make improvements everyday. Anyway my evaulation went really well. I will enter the school system as a child with Other Health Impairments. This means I will have on IEP and get OT, PT, Speech, APE, and special instruction. So I will get all my therapies I was getting with early steps. Something that we are excited about is my interview I did with fox 8 news new orleans. Alot of people are going to hear my story and hopefully others will be able to get help like my mommy got for me. It is suppose to air sometime this week. The news has a skpe interview with my neurosurgeon in Detroit Wednesday. It will be sometime after that. The news crew that came to my house was very nice and amazed by my story and progress. Talking about progress. I continue to make huge gains. I started taking steps again. I was having lots of trouble with my brace . We got it fixed and we put an arch support in my left foot so that I could stand level. Well I started taking steps 3 days later. We are very excited about this. I'm also getting much better with my balance. Mommy said she thinks its the pool helping with that. I love to swim and it has been great therapy for me. In fact for Mothers Day we went to the beach for a few days. Mommy found a room for $60 a night at the grand casino so we packed up and went. I want everyone to know that mommy and daddy used their tax refund money to takes us to the beach. All of the donated money stays in my account and is only used to help pay medical bills and to help make up the difference that my mommy is getting cut from not being at work. I don't want anyone to think we are taking advantage. We are so thankful for all the donation and everything that everyone has done for us. You all have helped our family more than you know. Anyway I had lots of fun on vacation. I got to play in the sand, swim in the gulf, and I loved the hotel pool. I swam all over the pool. I also learned to jump in the pool. I sit on my butt and jump in. I'm so brave. I look a little scared when I come up but I kept doing it over and over. I left a video of me jumping in. I basically did everything a two year old would do on vaction. I swam in the pool, played in the sand, played in the waves, road one of those big bikes in the water, took a nap on the beach with momma, fed the sea gulls, and knocked down the sand castles daddy built :) It was a great time and a much needed get away for my family. Last time we went to biloxi was a few months after my diagnosis. It was a time to get away and try to get our minds off things. Well this time it was a much different situation. It was a time to get away and enjoy every new thing I'm doing and with no seizures. I can't tell you enough how much our life has change now that I'm not suffering through 200 seizures a day. My mommy doesn't have to watch me suffer instead she gets to watch me progress and do things a typical two year old would do. We will thank God everyday for this miracle he has given me. Thanks for praying for me and please continue to keep me in your prayers. I'm leaving a few pics from our beach trip. I hope you enjoy them. Notice the one of me holding my sippy cup with both hands. Yes it's blurry because I only do it for a few seconds and mommy had to hurry up and take the pic but this is huge progress!!!

Monday, April 30, 2012

Neurologist appointment

My appointment went great today. My neurologist said I look great and am doing wonderful. I did show off my speech a little for her. I said Diego when she brought me a Diego sticker and asked me who it was. I said it right away. I also told her bye without any problems. I was not happy to be in a hospital and was so happy to tell her bye. I started crying as soon as I realized where we were. I fussed most of the time there. I was scared they were going to hurt me. Mommy kept telling me they weren't but I still had anxiety. Other than that we had a very great visit and we do not have to go back until August. I'm very excited about this. I use to go ever month or two. Mommy said she will miss seeing my doctor. She has become part of our family and has gone out of her way to help me and my family. So not much info today at the appointment which is a good thing. It means I'm doing GREAT!!!!!

Saturday, April 28, 2012

Great Days!!!

My days have been great. I'm learning so many new things. I talk all day long. I repeat everything I hear. I'm starting to label things. A few things are grass,sky,bed,ball,outside,all family names,eat,drink,sock,pow pow(for gun),key,bath,egg,chick, and many more. I say tv when I want to watch tv. I say pee pee and poo poo when I go to the bathroom. I answer yes and no questions correctly. You can actually have a conversation with me. It's unbelievable. I have learned the color blue and say blue when you ask me what color is this. We are working on red,yellow, and green now. I say yellow most of the time correctly but don't have it mastered just yet. I can consistently point to my head,ear,belly,toes,eyes,nose and also say those parts while pointing. I can say three animals sounds when asked correctly and also say the animals name. I use to say the same animal sound for every animal but not any more. Of course I can repeat any animal sound my mommy says but I know 3 independently. I can now answer who is this questions and what's that questions. I also say what's that when I want you to tell me what something is. I'm just amazing my mommy and daddy with all my progress. It's totally amazing that I'm not even 4 months post surgery and I've made so much progress. God is really showing us just how powerful He is. He has given me a new life. My motor skills have kinda been on hold the last week or so. I can take steps but I'm scared to do it. You have to remember I'm 3 feet tall trying to learn to walk so I have farther to fall so it's kinda scary. I will get it though and my mommy is not worried at all. She said just whenever I'm ready. I did learn to get off the couch this week which makes my mommy happy because she doesn't have to get me off all day long :) We have decided to cut back on some of my therapies. I will not have therapy on Mondays and Wednesdays anymore. It's too much therapy and I'm getting overwhelmed and not wanting to do therapy. It's ok because my mom does therapy with me all throughout the day and I don't even realize it. One of the best therapies I'm doing right now is swimming with my mom. I can do it all by myself as long as I have my floaties on. I just love swimming too!!! I jump off the step and swim to my mom :) I have a neurologist appointment Monday in NOLA so I'll let you know what she says. I think she is going to be impressed. Keep praying for me to continue to get better. Love you all, Jadon
Sent from my iPhone

Friday, April 6, 2012

A much needed update!!!

Wow so sorry its been so long since I updated you. Let me start off by saying thank you so much to everyone who came to my run for recovery. It was a great day and I had lots of fun. I loved getting to see each of you. Thank you again for everything you have done for me. I'm leaving a picture of me crossing the finish line. It was the best part of the day!!!! I'm still doing amazing well and still not having any seizures!! I posted the video of me walking for you all to see. I still have a long way to go before I can do it all by myself but its a start and we are very excited about this. Of course my speech is still improving drastically everyday. I can say so many words that my mom has lost count. It's definitely over 65. I'm starting to say phrases such as throw it back when I want you to throw me the ball. I can say sweet tea when I want some to drink. Yesterday I was saying ma ma bad bad. LOL My speech is slurred and it is kinda hard to understand me but random people are beginning to understand me. WOW!!!!The slurred speech is just muscle weakness. The stronger I get the more clear my speech will get. I did have a little set back this weak. I had the beginning stages of pneumonia. Luckily my mommy brought me in soon and we caught it quickly. I'm much better now and am gaining my strenght back. I'm also having some problems with my AFO so I haven't been walking the last couple of days. We have an appointment on Monday to get it fixed. Hopefully we can get it fixed and I can start practicing my walking again. I hope everyone has a great Easter. Remember to celebrate what Jesus did for us that day on the cross. I can't imagine the pain he suffered and he did for you and me. He loves us that much!! I love you all, Jadon

Friday, March 23, 2012

Tomorrow is the day!!

Tomorrow is my 5k run. I'm very excited and can't wait to see everyone. If you can please come celebrate my progress with us. You may even get to see me do my new trick. Yes I started taking steps yesterday. I can take about 5 steps. I get so excited and start going to fast. I have to learn to slow down a little and then I will be walking everywhere. My mommy and daddy are so proud of me. They never thought that i would progress this fast after surgery. I'm only 9 weeks post surgery and I'm saying about 50 words. The best part about me talking is I'm starting to use the words without my mommy having to say it first. I'm also saying people's names when I see them. Today we stopped at my papa's funeral home and as soon as mommy got me out the car I was saying papa. I knew he was in that building. I'm doing things that my mommy and daddy didn't know if I would ever be able to do. It's amazing!!!! We thank God everyday for what he has done. I hope to see you all tomorrow. If you haven't registered don't worry you can register in the morning. See ya in the morning, Jadon
For more information and times visit jadonsrunforrecovery.com

Wednesday, March 14, 2012

Detroit Results!!

I had a GREAT trip to Detroit. We did not get to stay at the Ronald McDonald House this time because of our flight time. We stayed at a hotel by the airport which was alot of fun. They had a swimming pool and I got in it everyday. I left you a picture of me swimming. I just love the water!!! I received AWESOME news in Detroit. The first test I had done was a CT scan. I saw my neurosurgeon after the test. He said that my CT looked great. I didn't have any fluid build up. This is great news because it means I do not need another surgery!!!! The neurosurgeon said I'm doing great and I will continue to get better. The next day I had my 2 hour EEG. I did fairly well while they put the leads on this time. I usually scream the entire time. They swaddled me up( see pic) and I actually did better this way. Once they hooked me up is when it began. I did not want the leads on my head. I keep pulling at them the entire time. I finally fell asleep for a little while but I didn't sleep long. I then woke up and was back at trying to get it off. It was a long 2 hours. The great news is that my EEG was normal. YES I went 2 hours without having a seizure while hooked up to EEG. I can remember a time when they needed me to go 2 hours for a test. They tried for 3 days and I never went 2 hours without having seizure activity. So yes we are very excited that my EEG was normal. That means I have gone over 2 months without having a seizure. It unbelievable but with the help of God and the doctors at Detroit Children's Hospital, I have been given a new life. I can't tell you how grateful I am for meeting this neurologist that saved me from these seizures. Him and his staff are totally amazing. I can't say enough about how awesome they are!!!! After my EEG we met with my neurologist. You know Dr. Rockstar!!! He was very pleased with my progress. He said I'm doing amazingly well. I gave him a high five with my right hand. I said some words for him. I even reached out for him to hold me and he took me right away. You see I told you he was AMAZING!!! He said that I am doing extremely well but that we haven't seen anything yet. He said just wait and watch what I'm going to do. It's going to be great. He talked about me going to school and that I may even be able to go to college one day. He said we need to have high expectations so that I can reach my maximum potential. He said that since I haven't had any seizures so far it is unlikely that we will ever see another seizure again. Can you believe that? No more seizures. Words can't describe how awesome we feel. I have to stay on my seizure medicine as a precaution for a year. If I'm still not having any seizures next January, he will take me off my last seizure medicine. By the way I'm only on 1 very small pill so I really don't mind taking it. We will have to go back to Detroit in July. At that time they will do a MRI with DTI testing which will show exactly what has transferred to my right side. I want to thank each and everyone of you for your prayers. I do not believe we would be where we are today if we didn't have everyone praying for me. Thank you for being a part of the miraculous experience. Please keep praying for me and I can't wait to show you what I'm going to do next. Oh and by the way I'm now saying over 40 words. Yes I know unbelievable!!!!

Saturday, March 10, 2012

2 months seizure free.

Today makes two months since my surgery and two months of no seizures. I'm so happy that I'm not having seizures anymore. My life is so much better. I'm learning more and more new things everyday. I'm so thankful for what God is doing in my life. I leave in the morning to go back to Detroit. I will have a CT scan on Monday and then an EEG on Tuesday. I have an appointment with my neurosurgeon Monday and with my neurologist Tuesday. I come home Wednesday. Please say some extra prayers for me. These two test are really important. Monday's test will show if I have any fluid build up. They don't expect that I will but if I do I will have to have another surgery. Tuesday's test will let us know if I'm having any spiking or slowed brain waves. We do not think I am but this will let us know for sure. Please pray that both test will be normal. I'll keep you updated while in Detroit. I cant wait to show my doctors all my new tricks!!! Love ya, Jadon

Sent from my iPhone

Friday, March 2, 2012

5k run/ Yearly evaluation

March has arrived and I'm very excited about this month. On March 24 they are having a 1 mile fun run/5k run for me. It's going to be so much fun. Ms. Louisiana will be there. Chris Gray will be there to play. We have 2 praise bands that will be playing. We also have dancers from the local dance studios that will be performing. There will be a petting zoo for the kids and inflatable bounce houses. They will have food for lunch and awards for the winners of the races. It's going to be a fun day. I can't wait to get to see everyone. So if you have been keeping up with my story and never met me, it would be a great time to get the chance. It's going to be a great day to celebrate with my friends and family my progress. You can read more about the race and print your registration forms at http://jadonsrunforrecovery.com/ Don't forget that forms are due by March 10th. We will accept forms the day of the race but we can not guarantee that we will have a shirt for you. It's also cheaper if you go ahead and send the form in. So get your forms in soon and I can't wait to see you there. I will be participating in the 5k race. My mommy is going to push me and my brother. When we get to the end she is going to let us get out and cross the finish line. I can't wait!!!!!!
As for me, I'm still doing amazing. I can walk in my walker again. My mommy wrapped my hand around the handle and I took off. I had my yearly evaluation with early steps today. I did amazingly well. The evaluator has been evaluating me since I first started and she was totally amazed. I was matching colors, pointing to objects that she said aloud, stacking blocks, putting rings on a stick, matching animals, pointing to my feet and others feet, and following directions. I was doing some 3 year old cognitive skills. So my cognitive skills were great which is awesome. My social skills were amazing also. I love others and interact with others. Of course my motor skills and speech skills are behind but those have been the hardest things for me to do. Though they are behind, I have made huge improvements since my last year's evaluation. We will not know the exact results until the end of the month but hey its much better than we thought. We are super excited about how well I did. I have done nothing but progress since my surgery and I proved it today!!!!! Thanks you so much God for everything you have done for me!!!!!!! Here is a video of me walking. I hope you enjoy it!!

Please continue to pray for me. Your prayers are helping me recovery. We leave 3-11-12 to go back to Detroit for my checkups so please begin praying for that. The two test that I will have done while there are very important.

Wednesday, February 22, 2012

2 years ago our lives changed forever.

Today makes 2 years since I was diagnosed with Infantile Spasms. I can not believe its been that long. I'm so excited that today after my 2 year fight, I can say I'm no longer having seizures. My mommy and daddy say I'm the strongest little boy they know. I don't know how to give up. I fought around 200 seizures a day for almost 2 years before they stopped. Doctors were amazed at how well I was doing. God has been right by my side the entire time. When I wasn't strong enough he carried me. His arms have been around me and comforting me through this all. I would not be able to be so strong if it wasn't for God's loving arms around me and my family. I'm so thankful to have a family that has fought for me and trusted in God's plan. If they would have given up at any moment we would not be where we are today. So today we are crying tears of joy and shouting our praises to the Lord who has taken these seizures away. I'm leaving a timeline of pictures and major events that have happened to me the last 2 years if anyone is interested. This timeline is only a small piece of what we have been through. As I was creating this and looking back through everything we have been through I honestly do not know how we made it through everything. All I can say is God has carried us through the tough times and continues to guide us on my journey!!! My mommy and daddy realize how blessed they are to have me. They say not everyone gets to witness a miracle from God like the one we have witnessed. I have taught them so much about life. They say they are both better people because of me. My smile will make the problems you think you have go away. If I could pass anything on to my readers, I hope that it is love. I hope that you have become a better person and realized what is important in life. I hope that you have grown closer to God by seeing my strength and what He has done in my life. My journey and my struggles are not over but I can't wait to see what God is going to do next. I love each and everyone of you!!
August 25, 2009- I was born. I had to go the NICU for oxygen for a day but I went home a healthy 8lb 12oz baby.
November 25, 2009- My 3 month picture. So strong and meeting all my developmental milestones. In fact I rolled over at only 5 weeks old.
December 2009- I had RSV and was in the hospital with my brother for 5 days. This was on the way home from the hospital. This was the first time I was in the hospital with my brother.
January 2010- We started noticing these movements I was making. Little did we know our world world was fixing to be turned upside down. I was still such a happy baby. It didn't look like anything was wrong at all.
February 24, 2010- I was diagnosed with IS just before I turned 6 months old. Our world was changed forever that day. My mommy told me she would do everything possible to help me get better. She also said that her and daddy would stand by me and help me through every step of my journey. This picture was taking the day after my diagnosis and I'm still smiling even though my development had stopped.
February 28, 2010- I was put on klonopin on my diagnosis day. It made me so tired and weak. I couldn't even hold my head up.
March 2010 - I was put on prednisolone for a few weeks. It was not helping any. They increased my dose but it still did not help. My insurance finally approved my ACTH medication and I started ACTH. I went 2 days with no seizures but they started back. My EEG did clear up. The medicine made me swell so much. Again I still remained happy and smiling.
April 2010- I was put on another round of ACTH because my IS was coming back and my EEG was looking worse. I didn't swell as much this round and this round cleared up my hypsarrhythmia. Once the hypsarrhythmia was gone I started to develop again even though it was very slowly.
May 2010- I was put back in the hospital to try more medication. I did learn to sit this month at 8 months old.
Summer 2010- That summer brought many hospital stays and many medication changes. We did get to go to the beach for about 2 days. It was about 2 hours away because we didn't want to be to far away from our hospital. Mommy and daddy started researching other places in desperation to get some help for me. We decided to go to Boston but we couldn't get an appointment until September.
August 25, 2010- I turned 1 and was doing pretty well developmentally considering what I was going through. I could sit up by myself. I was making some babbling noises. I could say dada. I could play with my toys. I could use my fingers to eat. I was crossing midline. I could stand if someone was holding my hands. I was very attentative and loved to smile at others.
September 2010- My brother and I got sick and were put in the hospital. This was the second time that we were both in the hospital. The hospital was great and let us stay in the same room with mommy.
October 2010- We visited Boston for the first time. They did lots of test and we still didn't have any answers. They gave us more treatment options to try and said to come back in a year. We started Banzel which was the only medicine that helped my seizures for any amount of time.
November 2010- I started the keto diet. That same month my grandmother died. I know she has been watching over me ever since.
December 2010- I was having lots of problems with the keto diet so we went back to Boston to see their specialist. We made some changes and my seizures continued to get worse so we stopped the diet. They told me to come back in June to repeat my MRI because it was showing slowed development. We also went to Houston to see an herbologist to see if she could help. We visited Santa while we were there.
January to May 2011- We made lots of medicine changes to try to stop my seizures. I was in and out of the hospital. I got sick and was put on steroids. My seizures got better but they didn't stop. We decided to do IV steroids to try to stop my seizures but it didn't help at all. Through it all I'm still smiling.
June 2011- We went back to Boston to repeat my MRI. They said that my left side was developing slower than my right and to come back in August to repeat all my test. Especially because we were seeing right sided weakness and the seizures were making the right side of my body move. This was the appointment that we were told that surgery would be my only option but they didn't know if I would qualify.
July 2011- My family collected money and gave me an ipad. It has been the best therapy tool. I have learned so much from it. I will never be able to thank them enough for giving this to me.
August 2011- We went back to Boston again. They repeated all the testing but said I was not a surgical candidate. Our neurologist in Boston referred us to Detroit children's to see a specialist there. My mommy already new the doctors name because you know my mommy researches everything. The neurologist in Boston said that if anyone could help me it would be this doctor. I will always be thankful for this neurologist in Boston who was not afraid to send me somewhere else.
September 2011- We met the doctor that saved me from these seizure. We loved him from the start. He knew that the left side of my brain had 4 spots that were not working. He wanted us to try one more medication before he did surgery on me. My mommy and daddy were shocked. Could this be true. Can this doctor actually give us the answer we had been looking for for so long? We were scared to death of surgery but excited to have some hope to stop these seizures.
October 2011- We started the medicine but it didn't stop my seizures. It did help a little but the seizures slowly came back. We contacted our neurologist in Detroit to set me surgery date. It was a very sad month as we new what we were fixing to have to face.
November 2011- We went back to Detroit to meet my neurosurgeon and to update my MRI. We didn't have to but mommy said no surgeon is cutting into my head before she gets a chance to meet him and ask some questions. Turns out she didn't have to ask any questions, the surgeon answered them all when he explained the procedure. This made my mommy feel much better about my surgery. This same month I had an allergic reaction to lamictal. Seizure medicines are so hard on your body. Not only did I have an allergic reaction to lamictal but we also found out that I'm allergic to ants. See the last picture under this post. Wow what a crazy and busy month.
December 2011- We enjoyed family time. We made the most of every moment and spent alot of time on our knees praying.
January 2012- I had my surgery that relieved me from these seizures. We had to remove more than what we wanted but God had a plan and we followed. This surgery has turned out to be my miracle. Yes it was the scariest thing we have ever had to go through but I'm strong and with the help of God I have beaten the seizure monster.
A big thanks goes to my brother Jacob. This has been very tough on him. Its something a four year old shouldn't have to see but he has been there for me through it all. I love you so much Jacob!!!! This is me today February 24, 2012. Just look how happy I am :) I have come so far in the last 2 years. Thank you all so much for your prayers. Please continue to pray because I still have a long way to go.