There's nothing wrong with my heart :)

So everything went great today at childrens. I saw my cardiologist and they did an EKG. It came back abnormal so she sent us for an echo. They didn't know if they were going to be able to do it because I am moving so much these days. She said we may have to come another day so they could put me to sleep in order to do the test. Well I proved them wrong. I was such a good boy. I slept through the entire test. Mommy was so proud of me. She didn't want me to have to go through all of that. Well after the echo the cardiologist came back in and said everything was great. She said sometimes the measurements are abnormal on the EKG but once they do the echo and measure everything is fine. Its just hard for the EKG to meausre the chambers correctly on infants. So that is great news. We do not have to see the cardiologist again. Thank you God!!! So on to my neurologist. I talked to her this morning and she increased my topamax. She wants to see if that will help control my seizures better. I will let you know in a day or two how I am doing. I did not have a good day as far as my seizures go. Still having lots and lots of them.

Seizures, seizures, and more seizures :(

I wish I could post better news but this is what is going on. My seizures continue to increase each day. I have them everytime I wake up now. This is about 4 to 5 clusters of 20 or more twitches. This does not include the ones I'm having at night. This morning I woke up at 8:00 and didn't stop having seizures until 9:30. This is very scary for my family to watch. I do continue to be very alert and very happy. I'm not sleeping again. I have been up the last two nights for about an hour or two at a time. You see I always wake up at night for my nunu. Usually mommy just gives it to me and I fall back asleep but now I'm having seizures and can't settle back down. My mom is calling my neurologist tomorrow so we will update you and let you know what she says. I also have my cardiologist appointment tomorrow. It's not until 2:30 so I will update you as soon as I can. You know I always like to leave you with good news so here it is. My mom has been letting me swim every afternoon. We wait until about 5:30 when there is shade on the pool. I absolutely love it. I get excited when mom puts on my ring because I know what is coming. Since I have been doing the water therapy I am rolling over like crazy. Mom says this therapy is better than any therapy she is paying for...lol

EEG results not as good as expected :(

I got my EEG results back today. It wasn't as good as expected. The movements my mommy has been seeing is seizures. Its just a different kind of seizure. Moms always know when something isn't right. My EEG did not show any infantile spasms and thats what my neurologist was looking for. When the neurologist that reads the EEGs read mine she saw seizure activity. I am having myoclonic seizures now. So this is my new diagnosis. We really don't know alot about it as we just found out today. I will update when I have more information. The good news about my EEG was that my background was normal. That is great because my background had started to slow. Thats why I had to do another round of ACTH. Other than that we are just trying to deal with more seizures. I have had 3 cluster of about 20 movements today. This is an increase in my seizures but my mom really doesn't know how to count them. Did I have 3 seizures or 60? Big difference I will find out Monday when I talk to my neurologist again. Hopefully it was only 3. Please pray for me and my family as we really don't know what to think of all this. We know that God has a plan for me and we are just trying to trust Him.

EEG results(unofficial)

Ok so this is not official news, but my neurologist looked at my EEG and it is better. We will get the official results in the next 2 days. She said she did not see any seizure activity during my test. I was having what my mommy thought was spasms but she did not see any seizure activity while I was doing this. She said it is me trying to pull myself up. Can you believe that? Its very hard to tell what is seizure and what is not. That's why we have done so many EEGs. My mommy and daddy are so excited but they don't want to get their hopes up yet. Please pray that the other neurologist doesn't see any seizure activity. I am still having about 5-10 head drop seizures or what we think are head drop seizures. This is where my head drops and I lose control of my body muscles. My neurologist said that is fine. If they increase or if my spasms come back we are going to do a 24 hour EEG to see what is going on in my brain. During my EEG today my heart rate was really fast. It was about 145-160 while I was sleeping. They sent me up to cardiology where they did an EKG. The EKG came back abnormal so we have to go see a cardiologist next Monday at Childrens. My doctor said that this is nothing to really worry about. They see this abnorality in infants all the time. They just want to check it out and make sure that everything is ok. I have a virus and thats probably why my heart rate is up. We really love Children's Hospital in New Orleans. They do everything for me to make sure that I am ok. We are very fortunate to be so close to a good hospital. My neurologist was a little concerned about my appetite. I am not eating or drinking like I am suppose to. In fact I have lost 1 pound in just 10 days. This is a side effect of the topamax. We are hoping that I start eating more because we do not want to decrease my topamax. I am doing to good on this dose of medicine with the seizures. She also said that me not sleeping at night is just from the ACTH. We are hoping that I start sleeping better within the next two weeks. If not she will put me on some medicine to help me sleep. As far as scratching my head, its just me trying to soothe myself. So now we need your prayers. We need you to pray that my seizures stay away and not increase. We also need you to pray that I continue to develop. I have come so far in the past 3 months. Yes I am still delayed but I am making tremendous progress. Just this week I starting saying Ma. No its not momma but hey its a start and its babbling :) Thank you all so much for caring about me and I will let you know the official results when we receive them. I left a picture of me during my EEG today. I am such a good boy during my test as long as my mommy is holding me. Just look how sweet I am being :)

I need sleep!!

Nothing much has changed in the last couple of days. I am still not eating very much and not sleeping. I wake up several times throughout the night and am up for 2-3 hours at a time during the night. I just scratch at my head like something is bothering me. My mommy is going to talk to my neurologist tomorrow and see what she thinks. My mommy thinks my seizures are keeping me from sleeping. I hope they find out soon so I can get some rest. I lay there with my eyes closed but fuss and move around. I do have a rash all over my body and an eye infection. I had to have blood work done to make sure it wasn't bacterial. Thank goodness it wasn't. My white blood count is down so I do have some kind of virus. It should go away in a few days. As for my eye my pediatrician gave me a prescription for some medicine to put in it. On a happy note, I did go swimming yesterday and guess what I loved it. The last two times I went I screamed. This time my mommy got in there with me and I was so relaxed and so happy. I posted a few pics for you to see. My big day is tomorrow. I have to be at childrens for 8:30 for my EEG and then I see my doctor at 10:00. I will update you as soon as possible. Don't forget to say an extra prayer for me. Love you all very much!!!! Jadon

I don't want to sleep, eat, or drink

Well I got my last shot of ACTH yesterday. I am so excited that I do not have to get anymore of those shots. I am still having spasms. They are not that intense. In fact, they are very hard for my mommy to count. I am having about 10 more intense ones a day. We will see how I do with the spasms within the next 2 weeks. Hopefully they will not not get more intense. I am having trouble eating, sleeping, and drinking. I can't sleep more than 3 hours at a time. I usually go to be around 9:30 and I am awake by 12:30. I stay awake until 3:00-3:30 go back to sleep and am up by 6:00. I take a few little 30 minute naps during the day and then a 2 hour nap in the afternoon. I sure hope I start sleeping better soon. My mommy needs some sleep. She has been bringing me to my Mar's house in the morning so she can sleep some. I'm also only taking about 10 ounces of milk a day and I will not eat my baby food. My mommy is hoping I don't get dehydrated. I did this last time I was coming off the ACTH but not this bad. Well I have OT today at North Oaks and then my last blood pressure check tomorrow. My EEG is Tuesday so we are anxiously awaiting for that to see what we are going to do next. I am still smiling and getting stronger everyday. I'm even using my right hand to grab things:) I got my new shoes and they give me more support. I can even stand up in mommies lap. I will keep you updated on my progress. Please pray for me!!! Jadon

Donations Button is Up!!

Several people have been asking if I have a donation fund. Well my mommy finally got one for me. It's called Jadon Pailet Benefit Fund. You can donate through my webpage or you can donate at Regions bank. I will use this money to help pay my medical bills, medicines, and equipment that I need. I will also use it to help pay for my private therapies and the things I need for therapy. A few examples are shoes to help my feet stay straight, tools to help stimulate my nerve endings, a chair to sit in, etc. Please do not feel like you have to donate just wanted to put it on here for those who have been asking. The thing we want more than anything is your prayers and that is the main purpose for this site. We know that God will provide for our family. Some people have been asking about fundraisers too. We have a few fundraiser in the making. I will let you know details later. Thank you all very much for caring about me. I love you, Jadon