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.

Tuesday, May 31, 2011

Getting admitted in the morning.

I'm getting admitted in the morning to Children's Hospital in New Orleans. They are going to do the 5 day steroid treatment. My seizures started increasing Sunday and they haven't slowed down. My neurologist wants to go ahead and try the steroid treatment. Please pray for me. We would love for this to stop these seizures. We know God has a plan and we are just trusting him right now. I will keep everyone posted while I'm in the hospital. Thanks for praying. If you can say a prayer around 8:30 in the morning. That's what time we have to be there. I'm leaving you a picture of me sleeping with my big brother. I'm sure going to miss him this week. Talk to ya soon. Love you all, Jadon

Saturday, May 28, 2011

The day that got better.

Yesterday didn't start off to well. We received news that family housing in Boston was booked the dates that we requested. Well later that day mommy called them and they had our dates wrong. Can you believe that? Well when mommy told them the correct dates, it was available. This saved us around 500 dollars. Later that day my cousin helped us with our flights. We are so thankful for the blessings that we received yesterday. God really does have a plan. Now we can go to Boston and get the test we need. So here is the plan. We will leave June 28. We will be staying at the house on Autumn. My 3T MRI is June 29. We will then see my neurologist in Boston on July 1. He will go over the results of the MRI as well as review whats been going on since our last visit. He will then make suggestions based on the results of the MRI as well as my current medical information. We will return home July 2. We are very eager to get this test done and see what our neurologist in Boston has to say. My seizures have been around 40 or 50. It's still to soon but we think that the lamictal is helping some. Thanks everyone for your prayers they are really helping.

Tuesday, May 24, 2011

Neurologist appointment and it's back to Boston.

My appointment went really well today. We are going to increase my
lamictal a little faster since I'm doing well with it. We want to get
me on a high enough dose of lamictal to see if it is going to work. We
go back to the Neuroligist June 28. If the lamictal works we won't do
the IV steriod. If it doesn't we will do the steroids the week of July
5. She said if my seizures get out of control we will do the IV
steriods at that point. We also have to get in touch with Boston to
get my 3T MRI scheduled. She wants us to get that repeated. Of course
we have to go to Boston because they have the better equipment. My
mommy is going to call and get that scheduled tomorrow. Thanks for
praying and I will keep you all updated.

Sent from my iPhoner

Sunday, May 22, 2011

Making progress

I'm still doing ok. I had a bad morning this morning having 50 spasms
when I woke up but things slowed down after that. I'm officially
moving around on my belly. It takes all my strength and I can't go
very far but I'm moving forward. Yay!!! We are so excited with my
progress I'm making. I'm able to go anywear I want in a room. I scoot
in the sitting position or I lay down and sit back up until I reach
where I'm trying to go. Im basically a wiggle worm. I dont like
sitting still anymore :) My mommy has been taking me swimming in the
afternoons. I love it. I kick my legs and splash. I become very vocal
in the water for some reason. Mommy said swimming is going to be great
therapy for me this summer. I have a neurologist appointment Tuesday.
We are going to decide if I'm going to do the 5 day IV steriods.
Please keep my doctors and family in your prayers as we have to make
yet another difficult decision. I'll update everyone Tuesday night.
Thanks for your prayers!!!

Sent from my iPhoner

Sunday, May 15, 2011

A Sunday Happy

I have learned a new trick. When my mommy puts me in my car seat, I start waving bye bye. I've been waving bye bye for a while now, but now I understand that when we get in the car we are going bye bye. I've been doing it every time I get in my car seat. I'm just too smart. My family is so proud of me. I keep showing great cognitive skills. I'm also signing eat more and more everyday. I really wish I could find the ER doctor that told us not to expect much. She couldn't believe that I was sitting up the day she saw me. She really wouldn't believe what I'm doing now. I would love for her to see me today. As far as my cold, I'm much better today. Pray that I keep getting better. Thanks for praying for me everyone. Your prayers are helping me do the impossible.

Saturday, May 14, 2011

Has it really been a week?

Sorry I haven't updated you. I have been busy helping my daddy build a fence this week...LOL I had a really good week. My seizures are staying around 70 a day. We haven't noticed a huge increase since we weaned steriods. Hey we are still under 100. We were fighting 200 a one time. We are getting there. We stopped the banzel wean at 300 mg. We were trying to get down to 200 but my seizures increased when we lowered the dose to 200mg. We now know that 300mg is the dose I need to be on. We increased my lamictal yesterday. Of course I'm still not on enough of this to know if it is going to work. So far there has been no change, but we were expecting that. I started sneezing a lot today and my nose is running. I really hope I'm not getting sick again. Please pray that this cold will go away soon. We have an appointment with my neurologist on the 24 so I will let you know what they say. I'm leaving you a picture of me on my new wheels. I can go backwards really well. I can move forward, but I go really slow. This is going to be a great therapy toy for me. Thanks you Katie and Coye!! I love it!!!!

Monday, May 2, 2011


We made it home from the hospital. I was so ready to leave. I kept saying bye bye bye most of the day. After the nurse took my IV out, I started clapping and laughing. My test results came back today. I do not have mono. Praise the Lord!!!! I do have adenovirus. Adenovirus effects the respiratory system. In adults its like a common cold but it can make babies very sick. The virus also caused me to get ear infections in both ears and a throat infection. They gave me antibiotics through IV today and then I got to come home. I'm much better today. I ate 3 meals today. I'm playing on the floor. It's amazing how much I perked up throughout the day. The doctors said it will take about a week for me to get all my strength back. Thanks for praying for me. I know your prayers helped me get better so quickly. Oh and just so you know. My seizures have been awful. They always get bad when I'm sick but they were so strong this time. They are also much better today. In fact when I woke up from my nap this afternoon, I didn't have any. So we are praying that I continue to get better and that my seizures continue to get better too!!

Here is a little note from my mommy.
If you get a chance, listen to the new song on this page. The title is Blessings by Laura Story. It's a great song about the trials in this life and how they just may be our blessings in disguise. I can't tell you how much of a blessing Jadon has been to me and my family. He has taught us so much about just what is important in this life. I'm so glad that I'm able to share this little miracle that God has sent us with you all. Thank you all so much for praying for him and my family. God is truly blessing my family through this difficult time in our life. We can't wait to see what He is going to continue to do in Jadon's life :)

Sunday, May 1, 2011

Hospital Update

I'm sad to say that I have been admitted to the hospital. We are at St. Tammany in the peds unit. I got really sick Saturday morning. My mommy called my pediatrician. She sent us to lake after hours. They said my ears and throat were clear and they ruled it a virus. They said if I didn't get any better to go to the ER. I continued to get worse throughout the day. We talked to the pediatrician again and she said to go to the ER. The main reason she wanted us to go was because of the side effects of the lamictal and dehydration. We got to the ER around 530 pm and I didn't get to my room until 12 am. It was a very long night. They tested me for flu, strep, and did a CBC. Everything came back negative. They said that it's not anything to do with the lamictal. My blood work showed that my white blood count is up. Right now they are giving me IV fluids since I'm not eating or drinking. I was dehydrated when we got here last night. The doctor came in this morning and said my throat was full of pus. How lake after hours missed that and the ER doctor is beyond me. They retested me for strep and it came back negative. They are now testing me for mono and adenovirus. We will not know any of these results until tomorrow. I will be staying another night. Please pray that I get better soon!!!!