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.

Thursday, May 6, 2010

Terrible, Horrible, No Good Day

Well we got my EEG results back finally and it was not good. My EEG is getting worse. I am having lots of problems with the left side of my brain. My background on the left side is getting worse. My sleep spindles are getting worse. My seizure activity is increased. Basically my EEG is taking a reverse effect and going back to where we started. It is not nearly as bad as when I was first diagnosed but my doctors are saying its going in that direction. So now I have to do another round of ACTH injections. My mommy and daddy's hearts are broken. They hate having to give me shots and watch me go through this treatment. I am just miserable when I'm on these steroids. Please pray for my mommy and daddy as they are having a hard time dealing with this. I keep smiling to let them know that its going to be ok. My mommy scheduled my 9 month pictures on Monday. I will not be 9 months until the 25 but we don't want to do pictures when I'm miserable. I will be starting my injections on Tuesday. You will never believe this but my insurance company is giving me trouble again. They were suppose to ship my medicine today but that didn't happen. Mommy was on the phone with them for about an hour and they finally approved it but it was to late to ship it by then . Now they will not be able to ship it until Monday because it has to be delivered within 24 hours because it comes on ice. In the meantime my spasms are getting worse. I am having about 100 a day and each day that goes by they get more intense. Please pray for me as things are not going to be good for me this next month.


Avonia said...

Jadon we will be praying for you. Mommy and Daddy are strong people, they know where to get their strenght from and we will pray that they will remember that God will carry them through the tough t.ime. I know it is hard for them but have faith in God and He will give you the strenght. We love ya'll.

erica said...

Oh baby, I am so sorry! We are praying for you!!

Kathy said...

Monica: I had not been online for a few hours when I sent you the text...so had not read this. i will continue to pray and have sent an emal to our Or prayer warriors.