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.

Wednesday, September 29, 2010

3 more days

Sorry I haven't updated in a couple of days. It's just hard to update when things are not to good. I still continue to regress. This makes us so sad. I worked so hard to get to where I am and now I'm losing it. I am still able to sit up and I am still grabbing things. So that is great. The increase in topamax has helped my seizures. I'm not having nearly as many. Still alot but better. So things are getting a little better. I didn't get my blood work done Monday. My mom gave me my medicine so we couldn't go. It's very hard when you give medicine every day at a certain time. It throws mommy off when they say don't give meds. She said it must have happened for a reason. They are going to check everything when we go to Boston so we will just wait until then. No need to put me in pain twice right. Speaking of Boston we leave in 3 days. We are very anxious, scared, etc. Please pray for us as we prepare to go. The shirts that everyone ordered will be ready tomorrow. I will try my best to get them delivered to everyone by Friday afternoon. I may need some of you to meet me. I will let you know. I want to thank everyone at my church. You have blessed us more than you will ever know. We are so blessed to have such a great church family. We love you all!!!!

Sunday, September 26, 2010

Busy weekend!!!

We have had a very busy weekend. Yesterday we went to my cousin Allie's birthday. She turned 2 years old. It was a very special party. She told everyone to please bring me a donation instead of bringing her a present. Isn't that just too sweet. We raised lots of money at the party. I want to say thank you to my very sweet cousin Allie and her family. I love you!!!
After the party we went to the healing mass in Tickfaw. It was great and they prayed for me after the mass. Thank you Ms. Birdie for inviting us. Today we went to our church. Lots of people prayed for me and then they took up a love offering. I just know good things are to come for me. I know that God hears our prayers and we have lots of people praying for us. Our God is a great God!!! As far as my seizures go I'm still having alot. I'm also still very tired. I'm suppose to have blood work in the morning to check my medicine levels. They increased my topamax Friday because I was having so many seizures. Now they want to check my levels. Please continue to pray for me. The anxiety is starting to build as we prepare to leave Saturday. Check out the bible verse I added to my page. We know nothing is impossible with God and we know He will heal me in His time.

Thursday, September 23, 2010

Seizures leave me alone.

The shirts are all ordered and will be ready next Friday. My mommy will try to deliver them to everybody on Friday. That is fair day so we will be off of school. I haven't updated you on how I'm doing in a couple of post so here it is. I'm not doing to great. I'm having lots and lots of seizures. They are very intense and making me very tired. We thought they would get better since I'm not sick anymore but they really aren't. They had already started increasing before I got sick. During therapy today I had 7 seizures. They all knocked me to the ground. I lost total control of my entire body. Most of the time when I have seizures others barely recognize them. Well the ones I'm having now are very recognizable and my eyes are rolling farther back. My arms and legs are moving during them also. We are praying that this is not a different type of seizure. We leave for Boston 1 week from Saturday. I hope I can make it until then. I hate these seizures and the way they make me feel. I'm also starting to regress developmentally. My therapist said that my muscle tone is weaker too. All of this because I'm having so many seizures. We just can't get to Boston quick enough. Please continue to pray for me and I will update you soon.

Tuesday, September 21, 2010

Finally an answer from medicaid.

So we put in an application for the medicaid buy in program 4 months ago. It basically helps pay co-pays, private therapy, and medicine for me. It took them 4 months to answer but they approved me. Yay!!!! We are so excited. This is going to help me alot. We really didn't think we would get approved but we did. Thank you Lord. Other than that we are still taking orders for t-shirts. The color of the shirts will be purple with white writing. Thank you Ms. Betty for helping my mommy find the color for epilepsy. Purple represents a cure for epilepsy so that is why we are using this color. I'm really excited about this. Several people have asked about paying for the shirts. I will collect your money when I deliver the shirts. Right now all I need is your size. I will place the order on Thursday. Thanks everyone for praying for me. Check out the video and song below. It's about how God gives us strength and with Him all things are possibe. It's a pretty awesome song. You will have to go pause my playlist at the bottom of the screen so you can hear the video without my page music playing. I love you, Jadon

Monday, September 20, 2010

T shirts and prayer

So several people have asked my mommy about getting a shirt like the ones we wore to my fundraiser. Well my mommy talked to Ms. Connie today. She said that she can make some as long as we have an order of at least 12 shirts. I left a picture of us wearing the shirt. The back says follow Jadon at, and it gives my website. To keep things simple we are asking $10 for each shirt. If you are interested please email my mommy at monica.pailet@gmail.com with your order. You can also message her facebook account. She will place the order this Wednesday. So you have to order pretty quickly. We are asking that you wear the shirt on October 4. This is the day that I will be admitted to Boston Childrens Hospital. We hope that the shirt will be a reminder to pray for me and the doctors. While I'm talking about prayer, we are asking for everyone to start praying for me at 12:00 noon or 9:00 pm whatever is better for your schedule. We are asking that you start now and continue while we are in Boston. We believe in the power of prayer. We also know that God hears the prayers of the righteous. If we all come together and pray imagine what we can do. Thanks everyone for your prayers and thank you for caring for me and my family. Many people tell my mommy and daddy "I don't know how you are doing it" Well it's because of your prayers and your words of encouragement. I found this prayer online about praying for sick children. If you would like to use it when you pray feel free.

Lord, you love Jadon as you love all children,

Bring healing to him who is not well.

Stay by his side and comfort him through this trying time.

Keep his family ever mindful of your loving presence.

Bless Jadon with your powerful healing and comfort him also.

Thank you for hearing our prayer!!!

Saturday, September 18, 2010

In the hospital again :(

It has been absolutely crazy around here. My mommy had to leave work Thursday because my brother was just laying around and had no energy. She brought him to the doctor and he was severly dehydrated. Our pediatrician sent him to the hospital for what we thought would be an overnight stay. He was so sick he had to stay two nights. He didn't make it very long without me. I got sick around 5:30 Thursday night. I was staying with my Mar and Paw. They could not get me to keep my seizure meds down. So off to the ER we went. My mommy was waiting for me when I got there and my daddy stayed with my brother in the room. They gave me some zofran and it settled my stomach and I was abe to take my medicines. They admitted me because my vital signs were not to great and my blood work said I was already dehydrated. Once I got my IV meds my vitals got much better. We called my neurologist yesterday and they said to give me an extra dose of my keppra. It has help with my seizures. I'm still having alot but less than I did yesterday. I also look alot better. My brother is much better. He has been playing and back to his old self. The doctor just came in and said we get to go home. I'll keep you updated. Thanks for all your prayers.

Wednesday, September 15, 2010

Not Good :(

Things are not to good at my house. My brother and I both have fever. My brother has the stomach bug and mommy thinks my fever is because I'm teething. I'm having about 80 myoclonic jerks a day. I'm very fussy and tired. Mommy called my neurologist yesterday. We are having to see another neurologist because mine is off on maternity leave. The neurologist said to increase my clobazam. Yes the medicine that I'm still on that has not helped at all. Well it didn't help at all. Can you believe that? I'm not a neurologist but come on. So they will probably be getting another call from my mommy tomorrow. Please pray that we get better around here. All this sickness is no fun.

Monday, September 13, 2010

Application approved!!!!

So we heard back from Boston today. Our application for housing was approved. We will be staying at the House of Autumn which is right across the street from the hospital. We will be able to walk there from the hospital. We did have a little issue with the flights. We will be flying into Boston on the 2nd instead of the 3rd. It is going to save us $450 by flying in a day early. Mommy and daddy said it will give us a day to go see some things in Boston. We also got a call from the hospital today. They got all my information for my MRI testing. They said we should be getting another phone call within the next few days with all the final information. My seizures continue to increase. They are also getting stronger. It's still the myoclonic jerks but they are more intense. Mommy won't call my neurologist because their answer is always clonazapam which is worse than the seizures. Please pray that I can make it 3 more weeks. Pray that these seizures will stop increasing. I am getting 4 new teeth so maybe that's why I'm having more seizures. Who knows with these crazy things. Please keep praying and I will update you later in the week :)

Saturday, September 11, 2010

Medicine reaction, Seizures, and Final Dates for Boston

It's been an eventful last couple of days. I'll begin with my antibiotic reaction. I have been sick with a sinus infection for almost 2 weeks now. My Mimi and Aunt Mendy took my brother and I back to the doctor Tuesday because we were not getting any better. The doctor put us both on augmentin. Well I broke out in a rash all over my body. I had little red dots everywhere and then huge red dots on my back and stomach. Mommy called the doctor and they said to stop the augmentin, give me benadryl, and call them back in the morning and give them an update. My rash got better so mommy called them the next day. They said give me half the dose of medicine and call them back a 2. Guess what happened? Yes I broke out again. So the doctor had to change my medicine. The rash went away and I'm feeling much better. In fact, my nose has finally stopped running. Seizure wise I'm not doing to good. My seizures seem to be increasing daily. I'm still doing well developmentally just having lots of seizures. We are so ready to go to Boston. They have changed our date to October 4th. We will fly out October 3rd and come home October 8th. The doctor said he will just do everything while we are in the hospital. That way we don't have to go on the 29th and wait until the 3rd for admission. My mommy is trying to reschedule our flights. They have doubled in price but thanks to all of you we have the money to make up the difference. Mommy also put in for the house across the street from the hospital. That way mommy and daddy will be able to go take a shower and all that good stuff. The hospital rooms only accommodate for 1 parent but mommy and daddy always make it work some kind of way. If not we will have this room to stay and keep our belongings. We will all stay there on October 3rd and 7th. It will only cost $30 a night if they accept our application. Hopefully they will. This house is for families that travel more than 50 miles and have patients in the hospital. We should get it being that we are well over 50 miles away. Please continue to pray for me and my trip. Love ya, Jadon

Tuesday, September 7, 2010

Boston here we come!!!

My mommy spoke with the neurologist in Boston today. The first question out of his mouth was how long are you planning to stay in Boston. My mommy said as long as you want me to. So this is the plan. After reviewing my case he wants to admit us to Boston Children's Hospital for 3 or 4 days for testing. They will do a 3D MRI of my brain as well as a SPECT scan. I have posted the link that describes the SPECT scan. It is basically a test that will monitor my seizures, my nerves, and tell us what parts of the brain are active. Pretty cool right. My mommy and daddy are excited about this and we are looking forward to maybe finding some answers while in Boston. Our travel dates will be changing but we will not have definite dates until tomorrow. We will either be admitted on September 26 or we will have to wait until the following week October 4. The SPECT scan takes 3 to 4 days so I have to be admitted on a Monday. If they can't take us on the 26 then we will have to wait in Boston after our appointment on the 29 until October 4 for the admission. I am asking that you start praying for our trip, the doctors, and that we will get some answers. Hopefully we will be able to get the seizures under control in my near future. Thank you all who donated and made this possible for me. It really means everything to my family. Thanks again for your prayers. I'm leaving you a picture of me swinging. Paw put it up yesterday and I just love it as you can tell. I love you Jadon!!

Monday, September 6, 2010

I will never understand.

I will never understand why children have to get sick. I will never understand why a seizure medicine can have the opposite effect. I will never never understand why so many children have to suffer from sickness. I will definitely never understand why God needs a child in heaven more than a mother needs her child. Yesterday our Amite family lost a beautiful, brave, and loving little girl. She was one of the bravest people I know. I am asking that you please pray for this family. I can't imagine the heartache they are going through. They need strength right now. Also pray for this little girls friends. Friends shouldn't have to lose friends at such a young age. Though I will never understand these things I know God has a reason for them. I also know that God received a beautiful angel yesterday. She is now pain free. So today I'm leaving you a picture of this beautiful little girl and her family. Please pray for them. Caroline you will never be forgotten. You touched many lives while you were here. Rest in peace beautiful girl.

Wednesday, September 1, 2010

Much better :)

I'm feeling much better today. I gave my mommy and daddy a real good scare Monday night. My fever shot up to 103 and I was screaming crying. This caused me to start having trouble breathing which scared them very much. Mommy gave me some medicine and rocked me. I finally settled down. Once I settled down I started breathing better. It took about an hour and half for my fever to go down. Once it went down it never returned thank God. I still have a yucky cough but I look and feel much better. My seizures are also better. They are back to about 40-50 a day. My mom never gave me the clonazepam and would you know my seizures got better without it. Sometimes mommies know better than the doctors. I mean they are the ones that watch you all day long. My mommy and daddy have decided to cancel my private therapy at North Oaks. We are very sad about this. We love our therapist at North Oaks. It is just way to much for my mommy to handle right now. We have no one to bring me to therapy during the day and North Oaks doesn't have anything in the afternoons. So I had therapy 4 days a week now I will have it 2 times a week with early steps. Even though we canceled therapy my mommy will continue to do therapy with me daily.So I will still get my therapy and trust me mommy has learned what she needs to know to do therapy with me. My mommy feels really bad about this but now that she is working she just can't bring me. Other than that we are waiting to hear from the doctor in Boston. He is suppose to call my mommy tomorrow. He is looking at all my test that we sent over. I will let you know what he says. Please pray that he will call with good news. If he can't do anything different I don't know what we are going to do. We are running out of options. In fact my neurologist at childrens in New Orleans said we are not going to try anything new right now. So you can see we are stuck. Mommy and daddy refuse to give up though. We believe that we can control these and that God will heal me in his time. He has already healed part of my brain. When my seizures first started, they were all over my brain. Now they are just in the back left part of the brain. So we will get there. Thanks for your praying for me!! Jadon