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.

Sunday, August 3, 2014

Tonsil surgery update.

I had my tonsils removed Friday. I had to have blood work Tuesday and I did great. I didn't even cry which was awesome. We have such bad memories from blood work when I was younger. I'm doing really well post op. I ate some macaroni and cheese Friday night and I'm drinking plenty of liquids. The doctor said my tonsils were so big and infected that they had to be hurting me on a daily basis. Of course I never complained. The worse part for me has been the coughing. When I start to cough is when the tears start. Each day gets better. In fact last night I scared my mommy because I slept so good and quiet. In the past you could always hear me breathing at night. Well last night you couldn't hear me at all and my mom kept waking up to check on me. I woke up this morning and I feel great. I haven't had my pain medicine since yesterday around 7pm. I'm such a tough little guy. Other than that I did complete my 3 weeks of intensive therapy. I had a rough start the first 2 days but I did well the rest of the time. I missed 2 days because I wasn't feeling well but I did well the rest of the time. I'm taking a break for the next 2 weeks from therapy and then I will start going back weekly once school starts. Speaking of school my mom has to go back to work tomorrow and my brother and I go back Thursday. I just go that morning and then I will start the following week after Kindergarten testing is complete. I want to go back to school, but I want to stay in PreK with Ms. Sanders. I'm sure I will like my new teacher once I get started. I'll let you all know how school goes next month. Thanks for always praying for me! I'm leaving you a picture of my brother and I at the pediatricians office the other day. This pic was taken at the beginning, it wasn't long until we took these girl looking gowns off. LOL Anyway we went for our well checks. We have both grown 3 inches since last year. Our pediatrician said we are growing and doing well!! She was so impressed with how well I was speaking. She just couldn't get over how well I'm doing. She said I'm an impressive little boy :) If you look at the picture below, you will notice a cross. Well during the eye exam, the nurse asked me what that was. I said it's on a doctors badge. She just laughed and said well you get extra credit for that one. I've heard it called several things but not that. Lol


Saturday, June 28, 2014

Unexpected but needed update!

I know I said I wasn't going to blog until after my 3 week therapy but I have a few new things and a prayer request. First of all I'm loving every minute of summer. We have been spending a lot of time at the library. We are part of the summer reading program and we have almost met our summer reading goal! I love books and now that my brother can read, he reads them to me every night. We haven't gotten to swim as much as we would like but we are finding time to swim. Swimming is such great therapy for me. Speaking of therapy I have been going every Thursday for my 2 hour therapy. I haven't been doing all that great. I've started to not want to do therapy. So please pray for us. We start my intensive 3 hour a day therapy Monday through Friday for 3 weeks on Monday. This is going to be hard on me but the outcome is going to be worth every minute. I'm still getting stronger everyday. I can now climb the ladder to get into the playhouse. I can climb up on the gate of the fence to see my horse. I can also push a buggy at the grocery store with both of my hands while controlling which direction it goes. I'm very aware that my right hand does not work correctly. I've even cried about it and it just breaks my moms heart. Mom says we are working on making it stronger and that I can find other ways to do anything I want. I try so hard to use my righty. I rarely have to be reminded anymore. You will often see me using it as an assistant hand without being told. I also received some not so great news this week. I have to have my tonsils removed. We are down for surgery on August 1. This will give me just enough time to recover before I start Kindergarten. Yes I know its just a simple surgery, but everything is bigger when it comes to me. I had a hard time when I had my adenoids removed and I was very close to having to stay the night. We are hoping I will do better this time but I hear tonsils are little more involved than adenoids. So your prayers are appreciated. I hope everyone is having a great summer. We are in the process of moving out of our house. We are suppose to close on July 15. As you can see we are staying busy busy this summer!!! Thanks again for the prayers. Love, Jadon

Monday, June 2, 2014

It's Summertime!!

I'm excited summer is finally here. I get to stay home with my mommy and brother all summer :) I had a great PreK year. I had wonderful teachers, therapist, and paras. I made HUGE gains. I surpassed the goals set on my IEP ( individual education plan). The most exciting test was my getting ready to read test. This test was given at the end of the year and I scored a 20 (14-20 is considered average). My math test puts me a little below average but not by much. Here are some things I can do. I can sequence stories. I can name the characters, setting, and events to a story that is read to me. I can identify the beginning sound of a word. I can orally count to 30. I can count objects up to 20. I'm finally able to keep up with my peers while walking in line. So I'm ready for Kindergarten. I don't want to go to Kindergarten but I'm going to have a great teacher next year. I saw my neurologist today at Children's in NOLA. We brought her a copy of all my end of the year test and she was amazed at the progress. I'm a miracle to her as well as everyone else. She loves to hear about my progress and she always has fun toys for me to play with during our visit. We are making a small dosage change to my focalin but that's about it. She did confirm that fine motor is so hard for me because I'm having to teach myself how to write left handed. I'm not a natural lefty. Can you imagine having to learn to do everything with your left hand if you are a natural righty? Well its hard for me at 4 but we know it will get better the older I get. She says I'm doing wonderful and we will see her in another 6 months. Neurologist appointments use to be so stressful for us. They are now enjoyable and full of progress. We are so thankful for that. My mom said she can remember at one of our very first neurology appointments a little boy running up and down the hall as she sat in the chair holding me while I had seizure after seizure. She can remember wondering if I would ever be able to walk or run. Well I did both at the hospital today praise God. It's been a long journey but the journey is far from over. It's actually just beginning. We can't wait to watch me grow, learn, and overcome the impossible!!! Thanks for all your prayers! I hope you all enjoy your summer. I know I will!! I will blog again in July after my 3 week intensive therapy. Please pray we get great results from it.

Thursday, May 8, 2014

A much needed update!

Wow! Where does the time go? Anyway my therapy has been going great. You can see me in my suit in the pics below. Pretty cool stuff. I've moved up three times already with my weights. I'm getting so strong. Unfortunately I will have to continue to wear my brace. My tendon has loosened up on my ankle but I still need the brace support. I will probably have to wear it a while but I really don't mind wearing it. I already have my new brace in and my new shoes. I've only had it about a week and we can already see improvements with my balance and gait. We also found out that we did not get into the study in California. They took 7 kids and decided to go with kids who are a little older than me. I'm sure there will be other opportunities that come up in the future. We are having a 5K race May 17, 2014 at North Park. All money raised will go to the hemispherectomy foundation. This money is used for research for kids with hemispherectomies. We will have a donation jar at the park for anyone who did not get a chance to sign up. Just bring a donations and we will see you there. I will be doing the 1 mile fun run so bring your kids and let them walk with me!! We will start the race at 8 so we are asking everyone to be there for 7:45. I'm also playing tee ball. I left you a picture of me running to first base below. It's so amazing to watch me play. I get distracted but overall I'm doing really well. Talking about progress I have been doing excellent in school. I pretty much know all my letters and their sounds. I also know most of my numbers. This past month I brought a book home from school and read it to my mommy. I had memorized the book but its still amazing. I looked at the pictures and knew what the words were on that page. I'm also beginning to write my name. I can write a J. Writing is so hard for me. My mommy thinks it's because I was right handed and now I have to learn to write with my left hand. Plus I already have motor delays. So when I wrote a J my mommy couldn't believe her eyes. As you can see things are going really well for me. I have had a few sinus infections and strep throat but I think we all have been sick this past month. Thank you all for continuing to pray for me. I'm looking forward to summer and getting to stay home with my mommy and brother! Sending lots of love and hugs to you all, Jadon

Oh I almost forgot, I posted a video of the fox 8 interview that we did a while back on my blog. You should watch it. It reallly shows how far I've come!!!

Sunday, March 2, 2014

Therapy, Therapy, and Sports!!!

Lots of new things happened this month. First off my mom was able to get me into the constraint therapy in Alabama. They have a long waiting list so we are on the list for the summer of 2015. Our insurance is covering a good portion of the cost but we will still have to pay about $1400 plus travel expenses. We still are not a 100% sure if we are going to do this therapy but we do want to be on the waiting list. I also started private physical therapy again at innovative suit therapy in Mandeville. In my opinion this is the best therapy center in our area. We are going every Thursday for an hour and a half. At the facility they are able to work on my right hand while they do therapy basically on all my weak areas. One of the main reason we have gone back to them is because I am having to wear my brace again. We saw my brace doctor Mr. Mike at orthotics and Prosthetics ( by the way I think they are the best as well in case you are looking for someone in this area). He didn't want to put me back in my brace but the tendon behind my foot is starting to get tight. I have to wear it a month and do physical therapy. We will go back in a month and see what we are going to do from that point. The suit therapy that I go to is doing an intense therapy session for 3 weeks in the summer that we are going to do. It is 3 hours a day for 3 weeks. It will cost us about $400 for this therapy and we believe it will help me tremendously. We are also trying to get into a therapy in California this summer. It is a study that the brain recovery project is doing. They are only taking 10 participates so I don't know if we will get in but we are going to try. The brain recovery project is an organization that does different studies to see what therapies are beneficial to patients after hemispherectomy surgeries. Unfortunately there is not much research for children post hemi surgery. This foundation is doing these studies. We are so thankful for them because they keep us updated on the latest research that is being done. The study we are trying to get into is a robotic therapy. You can click on the youtube link below to see what I would be doing. It is a game that I would have to play using my right hand. It's pretty cool and interesting. If we get into this therapy, it would cost us $500 plus flights and room. The room would only be $10 a night. I will keep you updated and let you know if I get in. We believe that if God wants me into this therapy then I will get in. So lots of therapy things going on with me. It's expensive but we are trying to give me the best quality of life. You don't realize just how much you need two hands to do things until you can't use one. We know I will never have full function of my hand. It's impossible I do not have the motor cortex that controls that hand. We do know that I can get stronger and be able to use my right hand as an assistant hand but its takes lots of therapy and work. So other than therapy I have been playing soccer. Yes isn't that amazing. I'm attaching a few pics for you to see. I love being able to play with my brother. My mom is also signing me up for tball. I'm attaching a video for you to see. I'm pretty sure I will do fine playing. I'm really into playing sports with my brother right now. My mom says if I can find a way to play then she will let me. Its all for fun at this age!!! I also went to a Mardi Gras parade yesterday. I wore my headphones and I was able to enjoy the parade. It's the first time I was able to handle the noise of the bands. I now ask for my headphones. We have to work on getting me a different pair though. The ones I wore yesterday put to much pressure on my head and I nearly passed out. Yeah I scared my mom and dad half to death but as soon as we took them off my color came back and I was fine. I had them on for about 2 hours before this happened. We have to find a better pair for me that aren't so tight. I hope you enjoy the pics and videos. Please pray for me and that God will lead me in the right direction for all these therapies. I started praying for Him to lead us to the right therapies and He has definitely lead us to some amazing therapies. Thanks for all of your prayers!!

Pics of me kicking the ball and throwing the ball!!! My mom never dreamed she would be able to see me play soccer. God is good!!!

Look at that one handed hit for a 4 year old. Yeah mom says I'm amazing, I'm just finding ways to do the things I want to do!!!

< This is the video of the therapy in California that we are trying to get into!!

Tuesday, January 28, 2014

We love Detroit Children's Hospital!!!

We made it to Detroit and back. I did wonderful during the flights there and back. The flight back was delayed and we had to sit on the plane for over an hour before we departed. I sat down and was a very good boy the entire time. This trip was much more laid back than in the past. It was a very cold trip but I did get to see lots of snow. I loved playing in it and kept asking if Jacob could come play. I do not like being away from my brother. I also kept asking my mom if Santa lived here. I thought that Santa must live there since there was so much snow. LOL The first day we were there we settled in the McDonald house. We were able to bring a King Cake to the ladies at the house. Everyone kept trying to take it from us on the way there. We didn't have any appointments the next day so we spent some time at the Michigan Science Center. We had lots of fun at the center. I even got to hold a snake and a butterfly. Monday was the first day of appointments. We went to see Dr. Sood. He was the neurosurgeon who removed half of my brain. He is such an amazing doctor. He was happy to see how well I was doing. He said that since my language skills are basically caught up then that means my brain in working correctly. He said that he believes I will continue to progress and do well in life. On Tuesday I had a very important test. I had my first EEG done since I've been off medicine. My mommy watched it as I sat there and played and watched tv. She knew it look good but she didn't know how great it was. Dr. Chugani (neurologist) said that my right brain looked perfect and that my left looked like it should for someone who has had a hemispherectomy. That means I can stay off all seizure medication. It also means that my future looks great. He expects me to continue to progress and do well. This is huge for us. At some point we were just trying to stop the seizures so I could live and now they are expecting me to progress and do well. It's definitely a miracle!!! My neurologist did put me on Focalin to help with my attention. So far it has been good. I'm paying attention much better and my coloring is better. I also haven't had any side effects from the medicine. We are hoping it is going to help me. Oh and by the way its a pill that I have to swallow. Well I put it in my mouth and swallow it with my drink. Yes I'm only 4 and can take medicine like an adult. I'm awesome!! Our good news continued on Wednesday. We saw the pediatric hand surgeon. The hand surgeon said that I had more movement in my hand that any hemi kid he has seen. He said that by the time he sees them, their hand is curled down. The reason I have movement is because my hemi was done at such a young age. The best way to explain this is that you have two motor tracks the right controls the left side of the body and the left controls the right side of the body. When you are born the tracks haven't finished developing. In my case my seizures started so early that we believe my track started to transfer to my right side already. When my hemi was done they removed my motor cortex that controls the right side of my body. At that point the right brain had to control the movement on my left as well as my right. The younger this is done the more movement you have. So that's why I have more movement. A lot has to do with the time surgery is done. The main thing the hand surgeon said was that he could do a muscle transfer to give me a stronger grip. We can not do this until I get a little older. The reason is because I have to reteach the muscle to work in a different place. This would require lots of therapy and me understanding exactly what they want me to do and at this point I'm too young. So we will go back to Detroit in 2 years. We will see the hand surgeon again as well as get another EEG. I do not have to have anymore CT or MRIs unless we see a decline in development but that is not expected at all. We were very excited to get the results we got in Detroit. Everything looks very positive for me. They do want me to do constraint therapy in Alabama this summer. It is a 3 week program and it cost $2400. We are not sure if we are going to do this or not. We would hate to do it and it not work. If we knew it would help my right hand we would definitely do it but we just don't know. My mom is already talking to the therapist in Birmingham and we will see. I'll keep you updated. I'm attaching a few pics of our trip. Notice the EEG pic. I smiled the entire time. I never cried. I have such a positive attitude. Yesterday I got to go see my neurologist at Children's New Orleans. She couldn't believe how tall I have gotten. She looked at me and said" Jadon you are just a little miracle aren't you". We definitely believe that statement and coming from a neurologist who sees many neuro things it really meant alot to hear her say this. Thanks for all your prayers!!
Thanks for all your prayers!!

Thursday, January 9, 2014

The Scar I Wear


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.