Hospital Update

I had a horrible day yesterday. I woke up and had about 30 spasms. They still looked different but were still not intense. We went to church and then went back home for the rest of the day. I continued to have them but again they weren't very intense. I was very fussy yesterday and didn't nap much. I finally got a good nap around 5pm. When I woke up is when it started. I was having really intense seizures not spasms. They only lasted about 5 seconds at a time but they continued to cluster for over 20 minutes back to back. It scared my mommy and daddy. It's amazing how long 5 seconds can be. Not to mention we are over an hour away from Childrens. My mommy immediately called the neurologist on call. The on call doctor called our neurologist and they told us to come to the ER. My seizures stopped on the way to the hospital. I did have a few right when we walked in but not many. They started back up around 11:15 pm. They gave me ativan and it helped calm things down. After being in the ER for 5 hours we finally got to our room. I did fine the rest of the night. When I woke up this morning I only had about 12 of the little not intense seizures. So what is the plan? They are going to increase my vimpat and give it through IV today to get it in my system quickly. They are then going to do an EEG tomorrow. They want the ativan to get completely out of my system so we can see what's going on. The results of the EEG will tell us what to do next. We have discussed 3 different options but we have to wait until after the EEG. I don't have much good news but the good news is they think that I have some kind of viral infection. My body is covered in a rash. This is good because that is probably what is causing the seizures to get more intense. The neurologist doesn't think that the pednisolone is what caused the decrease. She thinks it was getting me off the topamax. So we really don't have any answers today. We have to wait until tomorrow. We are doing much better today. Yesterday scared us pretty bad. I HATE SEIZURES!!!!! I left you a picture of me snuggling with my daddy at the hospital. I love to snuggle. Please pray for me and my family!!!

Goodbye Topamax!!!!!

Goodbye topamax. I hope to never see you again. So yes I'm totally off topamax now. I took my last dose yesterday morning. I did so well with the wean we were able to get me off about a week earlier than originally planned. So NO MORE topamax. I'm just a little excited about this. In fact I said Dada for the first time this morning. Amazing!!!! So now what? We wait for our appointment on March 1. We do have a call in to my neurologist. She was out Friday so she will call us back sometime Monday. My seizures are still very little and not very intense. I have my good days and bad, but I'm having more good than bad. Hey what we are considering bad were actually my good days in the past. Only about 50 spasms. We don't know why I have days that are worse than others but that is pretty common with seizures. My seizures also look different. I'm not falling forward or dropping my head anymore. They look more like when you get a chill. So we are thinking I'm having a different kind of seizures but we are not sure. Talking about seizures. This Friday will make a year since my diagnosis. I just can't believe its been a year. Oh how our lives have changed in the past year. We have learned to celebrate the little things in life, to love more, to cry more, to be thankful for what we do have, to fight when the doctors don't give you much to fight for, to trust God more, to pray every second you can, to believe in miracles, and more than anything to have Faith and know that our God is in control. We have met some amazing doctors, therapist, and friends. I have to be honest and say that I do wish I never had to meet these people, but I'm so thankful for each and every one of them. They have helped us get through this past year more than they know. Please take a minute to listen to the song on my profile. The words are just perfect. I posted the lyrics below. Please continue to pray for me. I have come a long way in the past year and I just know things are going to continue to get better for me. Your prayers have helped me so much!!!

I have unanswered prayers
I have trouble I wish wasn't there
And I have asked a thousand ways
That You would take my pain away
That You would take my pain away

I am trying to understand
How to walk this weary land
Make straight the paths that crookedly lie
Oh Lord, before these feet of mine
Oh Lord, before these feet of mine

When my world is shaking
Heaven stands
When my heart is breaking
I never leave Your hands

When You walked upon the Earth
You healed the broken, lost, and hurt
I know You hate to see me cry
One day You will set all things right
Yea, one day You will set all things right

When my world is shaking
Heaven stands
When my heart is breaking
I never leave Your hands

Your hands
Your hands that shape the world
Are holding me, they hold me still
Your hands that shape the world
Are holding me, they hold me still

When my world is shaking
Heaven stands
When my heart is breaking
I never leave You when...

When my world is shaking
Heaven stands
When my heart is breaking
I never leave...
I never leave Your hands

More Great News!!!

First I want to say congrats to my Aunt Rachael and Uncle Michael. My cousin was born on my mommy's birthday. He was 5 pounds 11 ounces and 19 1/4 inches long. He is absolutely perfect and we are so excited for them. Now on to me. Well its been 2weeks. Yes 2 whole weeks with only 20-40 very small spasms a day. I don't think I've ever gone this long with this few seizures and this less intense. You have to be holding me to know that I'm having them. My eyes aren't rolling way back in my head either. We still can't believe it. People this is huge news for me!!! Just when it looked like we would never get control of these things LOOK WHAT OUR GOD has done!!!!!! We were so sad when I got RSV but it has been the best thing that could have happened to me. Between the topamax wean and the steroids I'm doing 100% better. I'm not going to lie and tell you we don't worry. Each morning when we wake up everyones eyes are on me counting making sure I'm not going to have more seizures than the day before. Yes we are VERY VERY thankful just scared they are going to increase and get more intense. We again are just trusting GOD and we keep reminding ourself that He is in control not us. We don't know what the next day, week, month, or year will bring but today I can't even explain the joy we have in our hearts. We go back to the neurologist on March 1. The plan is to start zonegran. We are also going to talk to her about maybe doing another round of prednisolone to try to stop these things completely. Please continue to pray for me as I continue to fight this horrible thing called epilepsy. Right now I'm winning and I'm determined to win in the end. I love you all, Jadon

I've been doing great the last two days. I've had about 30 spasms if
that each day. The good thing is I'm only having them when I wake up.
So I have anywhere from 5-10 each time I wake up and then none
throughout the day. We decreased my topamax again Wednesday night.
It's so awesome to only have to take 1 topamax pill at night. I can't
wait to get off of it completely. We think the topamax was making my
seizures worse. You see we started it right after ACTH. We assumed my
seizures were going up bc I was done with the steroid. It's heart
breaking because I've been on topamax almost a year and we didn't know
it was making things worse. We know there was no way of knowing this
but it doesn't make it any easier. We are very thankful that I'm
getting some relief though. God is in control and we have to remember
that. Guess what? Tomorrow I'm getting a new cousin. My Aunt Rachael
is having her baby. I can't wait to meet him or her. I'll keep you all
updated. I love you and all your prayers :)
Sent from my iPhoner

Mild but more.

My seizures have increased the last three days. I'm having about 40 spasms a day now. Even though they have increased they are still very mild. We are still thankful that they are mild. I'm still very happy and doing new things. We found out the other day that I'm not getting a PT. The PT that was going to come is not servicing this area anymore. So no PT for now. My mommy is trying really hard to find me one. I really need PT. Other than thing, things have been nice around here. It's amazing how much easier things have been the past week. Thanks for praying for me :)

Half Way Through and A New House!!!

We made it half way through my topamax wean. I'm still doing great. My seizures haven't increased at all. In fact, they are still very mild and very few. My mommy is home with me today so she has been watching me really closely. I've only had about 15 spasms and they are so little. I took my last dose of steroids Sunday. We are praying that they will stay down. Other than that we are enjoying the good days for now and thanking God for this relief in seizures.

My mommy wanted me to let everyone know that we finally got moved into our new house. We sold our house in Hammond about two years ago. My Paw let us live in the trailer by his house. (Thanks Paw) The plan was for us to buy land and build. Mommy wanted to wait until after I was born to start building so we waited. I was born in August and mommy stayed home with me until December. Mommy and Daddy started looking for land in January. That was also the month that my mommy knew something was not right. By February my family got the terrible news that I had IS. So of course we stopped looking for land. In fact, we didn't even think about buying land. All we were concerned about was getting me better. We knew building could wait. When we look back we realize how perfect God's timing was. We were able to sell our house when houses weren't selling. So we didn't have to worry about a house note when my mommy took a leave from work. Now a year later and much thanks to the USMC and VA loans, we have finally bought a house and moved. I want everyone to know that the donations you all have kindly given us have nothing to do with us buying the house. It was in our plan but with all that has been going on we were unable to. My mommy and daddy have a totally separate account with all my donations. We use that money for my medical use and expenses. We are so thankful to have that account. That account has allowed us to travel and see the very best doctors so that I can get better. It really makes our life a little easier. We love you and thank you so much for all you do for me and my family. When you pray for me today don't forget to thank God for this relief in seizures. I can't explain how awesome it has been for us!!

I'm feeling better.

I went for my checkup today. My pediatrician said I wasn't wheezing anymore. Thank God I'm not wheezing anymore. I can now stop the breathing treatments. She did put me on another antibiotic. I still have alot of congestion in my chest. Hopefully the antibiotic will help get rid of all this yucky stuff. My seizures are still great. I'm not having very many at all. I don't have a good number for you because they are so little you have to be holding me to even know I'm having one. We did stop the steroids yesterday so we will see how I do the rest of the week. Please pray that they will stay down. I can't tell you how much better life is when my seizures are down. I'm much happier, I'm stronger, and I babble so much more. My mommy also doesn't have to worry about me hitting my head. I can't begin to explain the joy it brings to my family. I will keep you updated. I got my computer back so it will be much easier. Thanks for praying for me :)