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 26, 2011

1 week and so very nervous

Well alot has happened since my last post. I actually ended up in the ER the day after my post. I caught a stomach virus which by the way effected 32 of my family members including my mommy, daddy, and brother. Unbelievable. Anyway I could not hold anything down including my seizure medicines. We called my neurologist in New Orleans and she called me in some medicine but it didnt' work. After 4 hours in the ER I was finally able to hold my medicine down and go home. The good new is I was much better by Christmas and we all had a great Christmas. I got lots of new toys to play with. My favorite toy was the ball that I got. Other than that I loved playing with the wrapping paper..LOL It was a very fun and much needed time. We got to visit everyone in my immediate family. It was a great day. One thing that Christmas makes me think of is Jesus's birthday. It makes me think of Jesus's momther Mary. I can't imagine what she went through watching her baby being hit, nailed to a cross, and left to die. My mom said she will always remember this and no matter how hard it is to watch me suffer throught these seizures it doesn't compare to what Mary had to watch her son go through. I'm very thankful for her strength and so very thankful that Jesus came and saved us so that we may live with Him forever.

We leave in 1 week for Detroit. We are going to be busy getting everything ready this week. We are going to get my very 1st haircut. We don't want my surgery to be the first time I get my haircut. We also have to get everything packed. We still need to buy a few small things for the trip. We also have to finish my prayer blanket. So I'm sure I will not have time to update my blog until right before we leave or we might be in Detroit before you hear from me again. Please continue to pray for me and my family. We are very anxious, scared, and nervous. We know that God has sent us to Detroit and we will continue to trust his plan. Thank you all for your prayers. I will try keep you updated daily in Detroit with specific prayer request. Right now I need you to pray that this will stop these seizures and that I can continue to develop. Also pray that I will not have any complications and that my recovery will not be to hard on me. This is the best thing you can do for me right now. Love ya, Jadon

Wednesday, December 21, 2011

2 more weeks

Yes we are leaving for Detroit in two weeks. Yes my heart drops as I type this. My mommy and daddy are getting really nervous. Though they are nervous God keeps showing us the way. Just when we start to doubt surgery God says I have control of this just follow me. I will take care of you. With that said I am progressing like crazy right now. I'm learning new words. I can now say cookie, puppy, and PaPa just a clear as can be. I attached a video for you to see. This progression is the main reason we keep questioning the surgery. I do believe God is just preparing my brain for the surgery. I believe I'm already using my right side of my brain for several functions. We do know we will probably see some regression but I'm not sure how much or if any. We will know shortly. Either way we have prepared ourself. We have also noticed that my left leg is moving during a handful of my daily seizures. This makes us REAL nervous as it could possibly mean right sided seizures. The more my mom watches me during a seizure though my right leg always moves first and then my left. So the seizure is still probably coming from my left side and just shooting over to my right. This is just another reason the surgery needs to be done to prevent the left sided seizures from going to my right side. My seizures are still around 100 a day. There intensity still vary. Just yesterday I had one in the buggy at walmart and hit my forehead on the buggy. I started screaming and the people in walmart just looked at me. Mommy just ignored them, picked me up, and kissed my forehead. It left a bruise on my head. I also have a bruise under my eye. I was playing with the water faucet and had a seizure. I hit my eye on the water faucet and it left a big bruise :( Just think in three weeks these seizures could be gone forever. That is what we are believing. There is still a 20% chance that I will have seizures. No one can tell us how I'll do or if I'll still have seizures. If they could this decision would be alot easier. They do think I will do well and that I will not have seizures. We have faith that God has sent us to Detroit and we have to do what he says. Everyone is asking what they can do for us. Right now we need prayers, prayers, and more prayers. Prayer is so powerful and that is the best thing anyone can do for us. I want to also thank everyone who has donated to my benefit fund. Your donations have helped make this surgery possible for me. We can never thank you all enough for what you have done for our family. I'm also so thankful for my mommies work people. You are all amazing. I love you all so much. Thank you for making this a little easier for my mom. I'm leaving a picture below of my moms work people. Yesterday was her last day of work until August 2012 and they came to school dressed in purple with purple wigs to show their support for me. It was awesome. I'm also leaving a picture of my family at our benefit Saturday. Thank you TPSO K9 and all that helped put this together. It means alot to my family.


Saturday, December 10, 2011

1 month

3 weeks from Tuesday we leave for Detroit. Two days after that I will have my 1st surgery and 1 month from today we will remove the parts of my brain that are causing these seizures. The closer it gets the harder it gets. The fear, the unknown, the worry, the dreams that keep you up at night, thinking about that moment I will be separated from my mom and dad for so long, the recovery. None of it is easy. My mom's friend emailed her a song that talks about even though we don't know how we trust God. This is so true and we believe that God will see us through this storm and take care of me. We have to keep believing. I attached the song if you would like to listen to it. I don't know if you remember but when we first started to make the decision if we should do the surgery, I stated that all the doctors would have to agree and that God would have to show us the way. Well remember from another post how all the doctors agreed plus some. Well everything is falling right into place. God is taking care of us, my work leave worked out, and God is showing us the way to Detroit. Just this week my daddy met a guy from Detroit that said we are more than welcome to stay at his house while we are there. We also were able to rent a car for $92 a week. If you have ever rented a car you know this is extremely cheap. The last time we stayed in Detroit our rental was almost $80 for 3 days. The flights worked out thanks to my wonderful cousins Jennifer and Gabe. The housing has worked out. Some of my family will be staying at the Ronald McDonald house and some at International Housing. My mommy and daddy will stay at the hospital with me. Only one parent can stay in the room but they have couches and recliners for parents to sleep. They also have showers and places to do your laundry. So everything has really worked out better than what I expected. Our GOD is awesome and we know we are making the right decision. Especially when I have weeks like this week. My seizures have been totally out of control. They are keeping me up at night and are not much better during the day. It seems like the medicine has just stopped working or either I'm getting sick. Who knows, these seizures are so unpredictable. Though my seizures are out of control, I'm still doing well. I'm following directions really well. When my momma says lets take a bath, I go to the tub. I'm trying to say words I just can't get them out. I'm crawling more and more and climbing, climbing, climbing. I'm into everything and can make a mess real quickly. I'm shaking my head no no when I don't want someone to do something to me and I'm signing all done when I have seizures. I'm finding ways to communicate without using words. I do have to say this week hasn't been as good as recent weeks but that's because my seizures are up. Please continue to pray for me. I love each and every one of you who keep up with my story and pray for me. Prayer has gotten me so far. My momma has prayed since the beginning that God would protect my brain and I truly believe he has done that. Just look at the things I'm doing that doctors can't explain. I'll try to do better in keeping my blog updated. I hope everyone is enjoying the Chritmas season. I know we are going to. Love ya, Jadon

Here is the link to the song.