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.
Saturday, December 10, 2011
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.