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.

Friday, January 6, 2012

Not so good but staying positive.

It's been a really long night. I'm very agitated and have anxiety when they come in the room. My mommy and daddy stayed with me until about 12:00 then my daddy stayed the rest of the night. My aunt Mendy came about 6 and then my mommy came back around 7:30. I'm still nauseated. I'm also still mad that no one can hold me. I'm moving out of ICU today. When we get to the other room my mommy will be able to hold me. All of my seizures are coming from my left side still. This is great news. I'm having lots of seizures. Some are due to the trama and others bc I didn't have any medicine yesterday. I'm back on my Meds so hopefully they will get better. We still do not have any results yet. All we know is that I'm spiking a whole lot on top of the 150-200 seizures we were seeing at home. We have to get these seizures to stop. They said that they are shooting over to my right side which has to be stopped. Please continue to pray. I have to be honest and tell you this is horrible. Yes God is giving us the strength to get through it but it feels like we are in a bad dream. I will leave you with some good news. First they said my swelling looks great. Not too much. Tomorrow will be the peak of the swelling. Next, our neurologist is on call this weekend at home and here in Detroit. Dr. C(neuro here) said not good for me but good for you. Lol. He said he is only on call ever 7 weeks. To me it's just another sign that God is taking care of me. Love you all.
I will stay strong. I will fight. I will win.

8 comments:

jedjakemom said...

Hugs to you Jadon. Peace, comfort and strength to you, your mommy and daddy!!

Danielle said...

(((((hugs))))) These days are SO hard. But every excrutiating minute that ticks by...is one more minute closer to the Healing Side.

Prayers mingled with hopes and tears for you guys from us guys.

...danielle

Pam de Jong said...

Big prayers and hugs to you and your family.

Janie Q said...

We are praying for you and your mommy and daddy and all of your wonderful doctors.
Jane and Keith

Amanda Palmer said...

Your such a strong little man. God will get you through this. All this is just making you and your familyy stronger. Love you all.
Amanda Palmer

Leigh Smith said...

Thinking and praying for all of you. I know that you and your mommy and daddy are overwhelmed but know that God is good and His will is perfect. We love all of you and will keep you in our prayers.

Julie G'sell said...

Staying with you in thoughts and prayers.

Sophie's Story by Elaine said...

Just came over from Danielle's blog. My daughter, Sophie, is just 4 weeks post-op from her surgery in Detroit.

These moments are so difficult but they will just be memories before you know it. As you know, you have an amazing team of doctors and staff. Everyone from Dr. Chugani to Dr. Sood to Dr. Asano to Sarah to everyone else inbetween...all perform their job with such perfection. I will keep you all in my thoughts.