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.

Monday, December 26, 2011

1 week and so very nervous

Well alot has happened since my last post. I actually ended up in the ER the day after my post. I caught a stomach virus which by the way effected 32 of my family members including my mommy, daddy, and brother. Unbelievable. Anyway I could not hold anything down including my seizure medicines. We called my neurologist in New Orleans and she called me in some medicine but it didnt' work. After 4 hours in the ER I was finally able to hold my medicine down and go home. The good new is I was much better by Christmas and we all had a great Christmas. I got lots of new toys to play with. My favorite toy was the ball that I got. Other than that I loved playing with the wrapping paper..LOL It was a very fun and much needed time. We got to visit everyone in my immediate family. It was a great day. One thing that Christmas makes me think of is Jesus's birthday. It makes me think of Jesus's momther Mary. I can't imagine what she went through watching her baby being hit, nailed to a cross, and left to die. My mom said she will always remember this and no matter how hard it is to watch me suffer throught these seizures it doesn't compare to what Mary had to watch her son go through. I'm very thankful for her strength and so very thankful that Jesus came and saved us so that we may live with Him forever.

We leave in 1 week for Detroit. We are going to be busy getting everything ready this week. We are going to get my very 1st haircut. We don't want my surgery to be the first time I get my haircut. We also have to get everything packed. We still need to buy a few small things for the trip. We also have to finish my prayer blanket. So I'm sure I will not have time to update my blog until right before we leave or we might be in Detroit before you hear from me again. Please continue to pray for me and my family. We are very anxious, scared, and nervous. We know that God has sent us to Detroit and we will continue to trust his plan. Thank you all for your prayers. I will try keep you updated daily in Detroit with specific prayer request. Right now I need you to pray that this will stop these seizures and that I can continue to develop. Also pray that I will not have any complications and that my recovery will not be to hard on me. This is the best thing you can do for me right now. Love ya, Jadon

Wednesday, December 21, 2011

2 more weeks



Yes we are leaving for Detroit in two weeks. Yes my heart drops as I type this. My mommy and daddy are getting really nervous. Though they are nervous God keeps showing us the way. Just when we start to doubt surgery God says I have control of this just follow me. I will take care of you. With that said I am progressing like crazy right now. I'm learning new words. I can now say cookie, puppy, and PaPa just a clear as can be. I attached a video for you to see. This progression is the main reason we keep questioning the surgery. I do believe God is just preparing my brain for the surgery. I believe I'm already using my right side of my brain for several functions. We do know we will probably see some regression but I'm not sure how much or if any. We will know shortly. Either way we have prepared ourself. We have also noticed that my left leg is moving during a handful of my daily seizures. This makes us REAL nervous as it could possibly mean right sided seizures. The more my mom watches me during a seizure though my right leg always moves first and then my left. So the seizure is still probably coming from my left side and just shooting over to my right. This is just another reason the surgery needs to be done to prevent the left sided seizures from going to my right side. My seizures are still around 100 a day. There intensity still vary. Just yesterday I had one in the buggy at walmart and hit my forehead on the buggy. I started screaming and the people in walmart just looked at me. Mommy just ignored them, picked me up, and kissed my forehead. It left a bruise on my head. I also have a bruise under my eye. I was playing with the water faucet and had a seizure. I hit my eye on the water faucet and it left a big bruise :( Just think in three weeks these seizures could be gone forever. That is what we are believing. There is still a 20% chance that I will have seizures. No one can tell us how I'll do or if I'll still have seizures. If they could this decision would be alot easier. They do think I will do well and that I will not have seizures. We have faith that God has sent us to Detroit and we have to do what he says. Everyone is asking what they can do for us. Right now we need prayers, prayers, and more prayers. Prayer is so powerful and that is the best thing anyone can do for us. I want to also thank everyone who has donated to my benefit fund. Your donations have helped make this surgery possible for me. We can never thank you all enough for what you have done for our family. I'm also so thankful for my mommies work people. You are all amazing. I love you all so much. Thank you for making this a little easier for my mom. I'm leaving a picture below of my moms work people. Yesterday was her last day of work until August 2012 and they came to school dressed in purple with purple wigs to show their support for me. It was awesome. I'm also leaving a picture of my family at our benefit Saturday. Thank you TPSO K9 and all that helped put this together. It means alot to my family.

http://youtu.be/NXdYf9nY13s

Saturday, December 10, 2011

1 month


3 weeks from Tuesday we leave for Detroit. Two days after that I will have my 1st surgery and 1 month from today we will remove the parts of my brain that are causing these seizures. The closer it gets the harder it gets. The fear, the unknown, the worry, the dreams that keep you up at night, thinking about that moment I will be separated from my mom and dad for so long, the recovery. None of it is easy. My mom's friend emailed her a song that talks about even though we don't know how we trust God. This is so true and we believe that God will see us through this storm and take care of me. We have to keep believing. I attached the song if you would like to listen to it. I don't know if you remember but when we first started to make the decision if we should do the surgery, I stated that all the doctors would have to agree and that God would have to show us the way. Well remember from another post how all the doctors agreed plus some. Well everything is falling right into place. God is taking care of us, my work leave worked out, and God is showing us the way to Detroit. Just this week my daddy met a guy from Detroit that said we are more than welcome to stay at his house while we are there. We also were able to rent a car for $92 a week. If you have ever rented a car you know this is extremely cheap. The last time we stayed in Detroit our rental was almost $80 for 3 days. The flights worked out thanks to my wonderful cousins Jennifer and Gabe. The housing has worked out. Some of my family will be staying at the Ronald McDonald house and some at International Housing. My mommy and daddy will stay at the hospital with me. Only one parent can stay in the room but they have couches and recliners for parents to sleep. They also have showers and places to do your laundry. So everything has really worked out better than what I expected. Our GOD is awesome and we know we are making the right decision. Especially when I have weeks like this week. My seizures have been totally out of control. They are keeping me up at night and are not much better during the day. It seems like the medicine has just stopped working or either I'm getting sick. Who knows, these seizures are so unpredictable. Though my seizures are out of control, I'm still doing well. I'm following directions really well. When my momma says lets take a bath, I go to the tub. I'm trying to say words I just can't get them out. I'm crawling more and more and climbing, climbing, climbing. I'm into everything and can make a mess real quickly. I'm shaking my head no no when I don't want someone to do something to me and I'm signing all done when I have seizures. I'm finding ways to communicate without using words. I do have to say this week hasn't been as good as recent weeks but that's because my seizures are up. Please continue to pray for me. I love each and every one of you who keep up with my story and pray for me. Prayer has gotten me so far. My momma has prayed since the beginning that God would protect my brain and I truly believe he has done that. Just look at the things I'm doing that doctors can't explain. I'll try to do better in keeping my blog updated. I hope everyone is enjoying the Chritmas season. I know we are going to. Love ya, Jadon

Here is the link to the song.
http://www.youtube.com/watch?v=R7kVe8GSSwk&sns=em

Monday, November 21, 2011

Detroit results

We made it to Detroit. I had my 3T MRI today. The doctor said it looks the same as my last one. This is good news that nothing has changed. I did really well with the sedation. I woke up before the nurse tried to get me up. I immediately drank my juice and ate some crackers. The nurse said I would probably sleep most of the day and not really eat alot. Well I've been up all day and I have done nothing but eat. LOL. I also got to meet my neurosurgeon today. He is amazing. He answered almost all of my mommies questions on her list before she could ask them. He said that he has been doing brain surgeries for over 18 years. He said in that 18 years he has only lost one. That is bc she was from Australia and had another condition that they were unaware of and she had complications due to that. He also went over the surgery procedure from start to finish. He said they will do the first surgery on the 5th. They will place the electrodes on and they will put in a drainage tube. I will be in the PICU for a day and then I will move to a room. I will be able to play and I will be fully awake. They will get the information they need and then will decide what needs to be removed. He said he can't tell us for sure but he also believes that alot of my functions have transferred to the right side. He said this based on the tissue that isn't working on my left side. We know this bc of my PET results. We will know alot more once the first surgery is done. I will then have my second surgery which will be 7-10 hours. They will have to give me blood during the surgery :( After surgery I will go to the PICU. They will monitor me for blood clots and any complications. He said he has only had 3 patients who have had this but it is a side effect and it needs to be watched in case they need to go back in. I will then go to a room. I will be on IV antiviotics to help prevent infection. I will still have two drainage tubes in. Hopefully within three days circulation will pick back up and they can be removed. Sometimes they do have to put a shunt in. I will also have a metal plate and 3 screws. He said that the bone will actually grow over the screws within 3 months. Kinda amazing. If everything goes well I'll get to come home two weeks after surgery which will leave us here for three weeks. We did learn that we are not ready for this. I don't think we ever will be. It's
very scary but we trust these doctors. I can't explain it but it just feels right. I know it's what has to be done and I know God has sent us to this place. Again I can't explain how intelligent these doctors are. They are amazing and I trust them. Oh one more thing. He said depending on which surgery we decided to go with there is a 90 % success rate. Pretty amazing right. I might regress some but he said it will come back. Even my speech. My mommy said she will be very sad if she doesn't hear me say momma after surgery but if it helps in the long run it will be worth it. Keep praying everyone. Though we aren't ready, the waiting is so hard. I saw this on the refrigerator at the house today "God didn't say life was easy but he did promise to be there with you every step of the way." Love you all, Jadon

Thursday, November 10, 2011

Seizures, sick, neuro appointment, prayer request

My seizures haven't been the best lately. I'm having about 80 a day again. Surprise surprise. We are praying that they will just stay at 80 until surgery date. I can a least function at 80. When they increase to 150-200 is when the regression starts. I think this is just a reminder of why we need to do the surgery. My mommy and daddy say they have to try surgery. It's only fair to me so that I can have a chance. Even though I can't talk you can hear it in my cry " Mommy please make them stop, mommy what's going on, help me mommy". So yes I'm saying the seizures that make me cry are back. On top of all this I've been sick. Mommy brought me to the doctor Monday and they put me on antibiotic for a sinus infection. Then Tuesday afternoon I started running a high fever. We thought it was related to the sinus infection but no I broke out in a horrible rash today. I also have ulcers in my mouth and fever blisters on my mouth. The doctor said it was hand, foot, and mouth disease. I probably picked it up in the doctors office when I went to get my antibiotic for my sinus infection. I can't catch a break right now. Hopefully this rash will go away soon and I can get better. Ok so enough of the bad stuff. I went to see my neurologist in NOLA Tuesday. She did receive the paper work about my surgery. She agreed with the surgery. She said she has done everything possible for me. She also agreed that I can't continue to develop unless we stop these seizures. She also said I have lots of potential if we could only get them to stop. She said that she would talk to the head of neurology about doing my therapy after surgery in NOLA. Well she walked out to write my new prescriptions and guess what the head of neurology was in the clinic. She agreed to let us do therapy in NOLA. She also agreed with the surgery. She then introduced us to the lady in charge of therapy in the hospital who also just happen to be in the clinic. So yes God was definitely looking out for us that day. My mommy was very nervous about the appointment and everything was perfect. Since we are going to do the therapy in NOLA we may only have to stay in Detroit 3 weeks. It all depends on how I do after surgery. When I'm stable enough to transfer we will transfer. We are very excited about this. Please continue to pray for us. We are definitely feeling your prayers. Everyone is being so helpful to us and we are so thankful to have all of you in our lives. I'm attaching a picture of a little boy that was just diagnosed with infantile spasms in our area. Please pray for him. He is the same age that I was when I was diagnosed. My mommy has been talking to his mommy. We are praying that the ACTH that he is on now will stop his seizures. One last thing. We are in the process of making a prayer blanket for me to take to Detroit. If you would like email my mommy at monica.pailet@gmail.com with your prayer and we will put it on my blanket. Thanks again for the prayers. Love you, Jadon

Sunday, October 30, 2011

We have our surgery date.

Well since I haven't gotten to blog this week, let me go back. My case was presented to the surgery board on Monday. Dr. Chugani actually called me after the meeting to let me know what went on. I know I've said this before but this Dr. amazes me more and more every day. Not many doctors take the time for his patients as he does. Anyway he said that he spoke with my doctor in Boston.(Who also called me and said he agrees with Dr. Chugani and thinks this is the best option for me. He said that Dr. Chugani is a very bright doctor and any idea of his is a great one.) He also said that the surgery board had a really great conversation about me and that everyone was in agreement that surgery is the best option for me right now. You see we have tried everything possible to stop these seizures. On top of all the medications, we have tried keto diet and an herbologist. So we have truly done everything possible to try to give me some relief. It's always the same story. It helps at first and then the seizures slowly pick back up. Last Monday when we increased my banzel, I only had 20 spasms and I went 5 hours without having one. I have never done this before. So yes we celebrated that day. You have to it was a good day. I wish I could say it continued but no I'm back up to 50 spasms a day. They are still better and less intense but they are slowly kicking back up. I can't even begin to tell you how frustrating it is and how much of a roller coaster it is. Its awful. Which leads me to my surgery date. I will go back to Detroit on November the 21. At that time we will update my MRI and I will get to meet the neurosurgeon. This will give us time to ask him questions and process everything before my actually surgery. We will come home and get to spend Thanksgiving and Christmas with my family. I will then leave January 3 to go back to Detroit. My surgery will be January 5. It will be a two stage surgery. This means I will have my first surgery on the 5th. They will go in and put electrodes on my brain. They will then halfway close me up and record data for 3 days. I will pretty much be sedated those three days while they get the information they need. The fourth day is the second phase of the surgery. They will go in and remove most of the left hemisphere of my brain. We don't know exactly how much until we get the results from the electrodes. The surgery will take about 10 hours. I will then go to the PICU for 24 to 48 hours. Then I will get my own room for a few weeks. We will be gone a total of about 4 to 5 weeks. There are NO words that can explain how we are feeling right now so I'm not going to try. We have decided to take my brother with us. We can't go that long without seeing him. He might not stay the entire time but he is coming at the beginning. I will keep you updated as we receive more information. PLEASE PLEASE PLEASE pray for me and my family. If you want to read about two of my friends who have had this surgery you can click on the links below. My mommy has talk to both of their mommies and they have helped out alot. The little boy Trevy is a little more like me than Charli. Trevy had the left side of his brain removed too. Charli had a stoke at birth so her story is a little different but both of these kids are amazing little miracles.

Trevy



Charli

Sunday, October 23, 2011

Surgery Update!!

Alot has been going on since my last post. First, I'm still having seizures and I'm on my full dose of vigabatrin. We did start another medicine. We put me back on banzel. Banzel is the only other medicine besides vigabatrin that has helped me. We thought maybe the two together would help. Well it has help and we actually have more control of my seizures than ever before. I'm having about 60 a day and they are not intense at all. It's very hard to know if I'm having one or not. Though we are excited about this its still not acceptable to have 60 seizures a day. So my mommy has been calling doctors and talking to them about the surgery. She even talk to a mommy whoes child had the surgery. If you look at the end of the post you will see the questions that my mommy ask Dr. Chugani and the answers he sent. She emailed him at 3:30 one afternoon and he emailed back by 7:00 that night. He is awesome. We do believe that God has sent us to him. When we first started looking for doctors to see my mommy and daddy looked in to going to see him or this doctor in Boston. We went with the doctor in Boston. We were in the hospital and actually met a different neurologist than the one we went to see. We liked him so much that we stuck with him and not the other. And would you know a year later he referred us to Dr. Chugani. That is why we believe it was meant for us to see Dr. Chugani. Of all the neurologist out there, there is no way this is just coincidence. It is definitely a God thing. So what is the plan. We have decided to go ahead and schedule the surgery. We will have our final date by Wednesday of this week. It is looking like it will be sometime in December or January. We will then make a trip to Detroit to update my MRI and to see the neurosurgeon who will be doing the surgery. We could do this the day before the surgery but we need time to discuss our questions and think about them. My mommy and daddy will think, pray, and get lots of opinions before they let anyone cut into my brain. We also talked to our neurologist in Boston. He said that no idea of Dr. Chugani's is a bad one. This made us feel a little better. He also said that Boston is doing a research study that can tell how much of the motor function has transferred to the right side. They use a machine to put next to the hemisphere. The machine cause the muscles on that side of the hemisphere to move. If both of my arms and legs move we will know if it has transferred. We are in the process of trying to get into this study. We would feel much better about the surgery if we can get this test done. It amazes me the test they can do these days. I'm asking you to pray harder than you ever had for me. I can't tell you how difficult of a decision this is for my family. We are praying and trusting that God will continue to lead us in the direction He wants us to go. I want all of you to know that we are planning my surgery and doing all the prep work but we may not do the surgery. Everything has to fall into place and we have to feel 100% that this is what God wants us to do. That is why we are asking for prayers, prayers, and more prayers. Thanks for all that you do for me and my family. I love you all and here are the notes from Dr. Chugani:

SEE ANSWERS BELOW

> Dr. Chugani,
>
> We recently came to Detroit to see you. My son's name in Jadon Pailet.
> We started Sabril the day after we left your office. It has helped but we
> are still seeing about 80 seizures a day. With that said the seizures are
> not as intense as they were before Sabril. Since they are not as intense,
> Jadon has learned 4 new animal sounds and is crawling a little bit. I
> know
> the next step is surgery but I have a couple of questions.
> 1. I'm worried about him regressing after surgery. My husband and I have
> been researching and it seems most children are worse off than Jadon when
> the surgery is done. What is the likelihood that he will be worse after
> surgery than he is now?

RARE TO BE WORSE AFTER SURGERY. IF SEIZURES CONTINUE, SOONER OR LATER IT
WILL TAKE A TOLL ON THE BRAIN

> 2. I read an article about brain surgery which said you can actually numb
> the hemosphere and then check for speech, memory, and motor. Is this part
> of the procedure that ya'll do?

THE GRID ELECTRODES THAT WE PUT WILL CHECK FOR VITAL FUNCTIONS SUCH AS
MOTOR. THE OTHERS ARE NOT AN ISSUE AT THIS AGE

> 3. When are we looking at doing the surgery?

WORK THAT OUT WITH SARAH

> 4. What part of the brain are we talking about removing? The entire left
> hemisphere or only the 4 parts that did not form correctly? I know we are
> not going to touch the motor cortex unless necessary.

WHAT IS REMOVED DEPENDS ON WHAT THE GRID EEG SHOWS

> 5. This is not a surgery question but just wanted to ask. Jadon was
> on Banzel. The banzel helped but didn't control the seizures. We took
> him
> off banzel because we thought it was causing the other medicine not to
> work. My question is does banzel work well with Sabril? I'm just
> thinking
> maybe we can get some more control if we put him back on the banzel.

THE 2 CAN BE USED TOGETHER. TRY IT IF YOU THINK IT MAY HELP. HAVE WE
MAXIMIZED THE SABRIL DOSE? HOW MUCH IS HE TAKING AND HOW MUCH DOES HE
WEIGH?

Saturday, October 15, 2011

:(

The title explains how we are feeling right now. I'm on day 3 of my final medicine increase and I'm still having seizures. My mommy has talked to my neurologist in Boston. He is in the process of talking with the neurologist in Detroit. He will then get in touch with my mommy and let her know his opinion on the surgery. I have 3 neurologist and we want them all to agree with the surgery. I know it's seems crazy that we are being so cautious. Most people say go ahead with the surgery if it could stop the seizures. Well easier said than done. You see it is a very dangerous surgery. On top of that they can't tell us that it will definitely stop the seizures. They are pretty sure it will but can't be 100%. You also run the risk of taking something out that I'm using which means I would regress or even lose function of my right hand. If I do regress they are hopeful that I will regain the skills. It's just alot to consider and it makes us sick at our stomach everytime we think about it. We are spending lots of time praying right now. I have to be honest and tell you it's hard to not be mad at God right now. Why do I have to suffer? Why doesn't the medicine help? Why are we in this situation? Why is it that my family has done everything possible and can't get me any relief? We have to sit down and think about how far God has brought us and how He has never left us through this all. My mom and dad will never forget the day the neuro in Detroit walked in and said wow he is very high functioning considering his situation. This tells us God is with us even though we don't understand why I'm having to go through this. Please continue to pray for me and my family. It's very hard for my mommy to have to leave me for work right now and she is having a hard time. Also pray for the decisions we are having to make. Keep praying for these seizures to stop. We know that even though the medicine isn't working God can still heal me. We are continuing to trust God as I continue to fight this battle. Love you all, Jadon

Tuesday, October 11, 2011

Eye appointment

I had my eye appointment today. After a 3 hour wait they said my vision is fine. I have to go back in 6 months to see if there has been any change. Other than that my seizures are still the same. We have to talk to the Dr. In Detroit tomorrow. II will let you know what he says. Please continue to pray!!!

Saturday, October 8, 2011

Getting better!!

Well I'm still having seizures and we are on our 3rd increase with vigabatrin. Even though I'm still having them, they are better. They are very little. You have to be holding me in order to know if I'm having one or not. I'm having about 80 a day still. This is an estimation because they are very hard to count because they are so little. We will increase the medicine one more time before we have to make some huge decisions. Please continue to pray for guidance. I do have some good news though. We all know what happens when my seizures get better so here it is. I have learned 5 new animals sounds this week. I now know 6 animals sounds. I'm also making all kinds of sounds. I can say the p,m,b,d,s,k,h and all the vowels sounds. I'm even saying a new word. I can call my brother Jacob. I try to put the cob on the end but it's mainly Jay Jay.You don't know how amazing this is, we have been working on my speech for so long. At one point I was not progressing at all in the speech area. We were very concerned that I may never make these sounds and look at me now. I'm continuing to prove them wrong. My motor skills are also better. I'm using my pointer finger. I'm sturdier when I pull up and I can crawl. My mommy has to make me do it because I would rather scoot but I can do it the right way..LOL Please continue to pray that I keep progressing and that this medicine will take control of these seizures. There is still hope that it can control them but time is running out. Also if you do not mind, please pray for my friend Liam Stine. He has IS like me and is in the hospital. Please pray for him. I love you all, Jadon

Monday, September 26, 2011

Vigabatrin Update

I have been an vigabatrin for 3 days now. My seizures are better. They are not nearly as intense as they have been. I'm also not having as many. I'm having about 80 a day instead of 150. Though we are seeing improvement, we have a long way to go. I need you to pray that these seizures will continue to decrease. We also need this medicine to continue to work. I've had success at first several times but the seizures have found a way around it. So please pray that the seizures stay down and continue to get better and GO AWAY forever.. Thanks for your support and prayers.

Friday, September 23, 2011

After a year and a half, we FINALLY know why I'm having seizures.

We spent alot of time with the neurologist today. (By the way he is absolutely fabulous. He knew everything about me. It was very impressive.) We FINALLY know why I'm having seizures. I have something called cortical dysplasia. We have always assumed this is what I have but now we know. It has shown up on images of my brain. So what does this mean. I have 4 spots on the left side of my brain that didn't form correctly. There is no reason why but it happened very early on in the womb. There was a spot on my right side that was questionable but once the doctor examined me he was not worried about it at all. He said I'm considered one of the high functioning children with seizures considering how many seizures I have and that most of the left side of my brain is not working. The reason I'm doing so well is because everything is transferring to my right side. This is great news but what it means is my right side of my brain is working at least 3 times harder than your brain is suppose to work. Plus on top of that my left side is giving it all kinds of problems because I have so many seizures. The problem with this is that my right side can not continue to work this hard. Eventually it will say enough I can't do all this. The doctor said it is usually around the age of 4 or 5 but he can't give us an exact timing. So what is the plan. He wants us to try a medicine called vigabatrin. You have heard me talk about this medicine. It's the one that can effect my vision. We will try it for 1 month. The doctor said that there is very little chance that it will effect my vision in 1 month. He has never seen it and doesn't know any neurologist that has. The problem comes when you have to be on it for a long time. So we are going to give it a try. If the seizure stop then we will be extremely happy. If they do not stop then he said I'm ready for surgery. He has everything he needs to remove the parts of my brain that are not working. Yes this is very scary but if it could fix it and give me seizure freedom it will be worth it. The doctor said today that if we can stop these seizure then I have the ability to do really well and live a normal life. So we will see how I do with the new medicine. I start it tomorrow. Please pray for me and my family. We have so many feelings going through us right now. We are happy that we may can get rid of these seizures, worried about brain surgery, and scared about the decisions we will have to make. We believe that God sent us here for a reason and we know that he will show us what we need to do. I love you all very much and thanks for all you do for me and my family.

Wednesday, September 21, 2011

I'm standing and Detroit



Sorry I've been slacking on the updates. Just been a little busy. First I want to start by saying I'm standing up. I can only stand there for about 10 seconds but its a start. I also started saying no no no. I've been very talkative this past week. My favorite word right now is ma ma. You know she is my favorite person. LOL I love my daddy and brother too. Well on to my trip. We made it to Detroit yesterday around 3:30. I was wonderful on the flight. I slept most of the time and when I was awake I was smiling at people and trying to get all the attention. The best part of the plane ride was landing. I screamed really loud like I was on a roller coaster. I'm not sure if the people on the plane liked this but oh well I was having fun. Once we got here we took a taxi to the Ronald McDonald House. The house is awesome. We even have our own private bathroom. The people here are very friendly. Tonight the local electric company came and cooked supper for us. It was very delicious. One of the guys that cooked for us had his son with him who had epilepsy too. We talked to them for a while. He actually sees the same doctor as we are going to see Friday. They said he is wonderful. Another great thing about the house is it is only $10 a night. We will not be able to stay here Friday night but that's ok. We are very thankful to get to stay here the other days. The hospital is right next door to the house. I had my AMT PET scan done today. It went alot smoother than I expected. We got to the hospital around 8:00 this morning. We had to wait for the medicine to be made. You have to be at the hospital before it is made. We waited until about 9:30. They took me back and started my IV's. Yes that's right I had to have two IV's. One to put medicine in and the other to draw blood out of during the test. The two have to come out of separate veins, they can not cross. The nurses did a great job putting them in. I was kicking and screaming and giving them a hard time. It's amazing they got them in so quickly. I went into the PET scan around 10:15 and I was done by 11:30. The doctor wanted me to use the new scanner. That scanner is faster and was able to do the test in a little over an hour. We originally were told it would be over two hours. So this was a blessing that we were able to use the new scanner. Once the test was over, they woke me up and we were back at the house by 12:00. We took a long nap once we got there. When I woke up we walked to the market and bought some groceries to keep at the house. So thank you so much for your prayers. Today was much easier than expected. We do not have to go back for any testing tomorrow. We are going to try to go do something in the city. Just so you know, this is not the best city we have been to. It's a little scary. So glad my daddy is here with us. In fact we walked to a place to eat yesterday afternoon and turned around. We did find a better area to go today. I will keep you all posted. We see the neurologist Friday and we should have some results. Thanks again for praying for me and please continue to pray for good results Friday. I love you all very much!!!!

Tuesday, September 13, 2011

Neurologist appointment

My appointment went well today. She is taking me off lamictal. It really hasn't helped and I have become so miserable on it. It will take about 4 weeks to get me off of it. We are also starting a new medicine called zonegran. I start it tonight and it will take about 4 weeks to get on a reasonable dose. Again we are praying that this medicine will help controll my seizures. We went over the seizure med list and there are only 4 that we havent tried. This is not good everyone. We are running out of options. We leave in a week to go to Detroit. We dont understand why I have to suffer but we are trusting God and we know he has a great plan for my life. Keep praying everyone. Love y'all, Jadon

Saturday, September 10, 2011

Lamictal increase not so great:(

We increased my lamictal again. We have been thinking for several weeks that the lamictal was making things worse but in desperation to find a medicine that worked we wanted to be 100% sure. Well we now know that it is definitely making things worse. We increased it again and my seizures are out of control. It has also affected my personality. I'm very fussy and I want mommy or whoever is keeping me to hold me all day long. Some of the seizures are also making me cry. It's not very many maybe 5 a day but when I say cry I mean a terrified screaming with real tears. It's absolutely horrible for me and it's also horrible for my family to watch. Since it is the weekend and my neuro isn't on call, my mommy is just going to go back down on the lamictal. We will see our neuro Tuesday and I'm sure she will give us a plan to wean off the lamictal. I don't understand why these medicines make my seizures worse. They have all made them worse with the exception of vimpat and banzel. The banzel helped alot in the beginning but then stopped working. The vimpat has done absolutely nothing. The only other thing that has helped is steroids. I know it sounds crazy but last week when I pulled up and started crawling, I had just come off of steroids. I had to be put on them because of a bite I had on my leg. I was only on it for a week and look at the progress I made. Not only do I have a rare seizure disorder but I do not follow the books in any way. I'm very thankful for how far I've come. I know that it's our faith and prayers that have gotten us this far. I will win this battle one day. I'm too determined to give up now!!!

Sunday, September 4, 2011

I'm pulling up!!!

We have been busy getting everything ready for Detroit. The hospital in Detroit wanted a copy of my 3T MRI and my 48 hour VEEG. We filled out all the paperwork to release this information so everthing has been done. Now we wait to leave. We were able to get in with family housing!!! We will be staying at the Ronald McDonald house which is right across the street from the hospital. We have to call 24 hours in advance to put our name on the list but the lady didn't see it being a problem. Other than that we increased my lamictal last week. We haven't noticed that it has helped any but I've been sick and running fever. My seizures are worse when I'm sick. We increase it again next weekened so we will see. We are still hopeful that one day we will get control of these 100 plus seizures that I'm having a day. I still continue to be a miracle. I started pulling up on the couch this week. It took me one time and now I'm doing it all the time. I attached the video so you can see me. Thanks for praying for me and I hope you enjoy the video!!! Jadon

Saturday, August 27, 2011

I'm 2, I'm walking with my walker, and the plan for Detroit :)

I'm 2!!! My 2nd birthday was August 25. My family came over and we had cake and ice cream. It was alot of fun. My Aunt Mendy made me a Mickey Mouse cake and I loved it. My favorite part of the party was playing in my playroom with my cousins. Thanks to everyone who came to celebrate with us.

I've been doing really well lately. My seizures are still the same but I continue to do new things. Just this week I began to walk some using my walker. My mommy has to stand there but hey I'm doing it. It's AMAZING. I attached the video for you to see. I don't like it but I'll get use to it.



Ok so we have our dates for Detroit. They originally told us that it would be November before we could get an appointment. Well they called and my appointment is at the end of September. We are so excited that we do not have to wait until November. We will leave September 20. I will have a PET scan on the 21st, a AMT PET on the 22nd, and then an appointment with the neurologist on the 23rd. I will not have to have another 48 hour VEEG since I just had one in Boston...Yay!!!!! My mommy and daddy will be going with me this time. My brother is going to stay home with my MiMi. We were able to find a nonstop flight from New Orleans to Detroit for a reasonable price. I am 2 now so my mommy and daddy had to pay for my flight for the first time. Not fun but we will have more room on the flight..LOL We were able to put in a request for the family housing in Detroit, so hopefully they will have availabilty. We should know sometime next week. Please begin to pray for my trip. We feel like this is our last chance at finding someone that can help get my seizures under control. We believe this is the next step we should take and we are trusting that God will continue to guide us on this journey.


Tuesday, August 16, 2011

A few pics and new therapy tools.




Well my mommy went back to work last week so we have been very busy. I'm doing great. I haven't cried for her once. Right now I'm staying with my mimi and I just love her. My seizures have been about the same. We did increase my lamictal again but haven't noticed any change. I'm on 20mg twice a day and we were hoping to see some improvement by now but we will see. My mommy did get me a new therapy toy. I'm trying to push behind things which is great but I'm too tall for the push toys. Well my Granny B bought a grocery cart. Mommy tried it out with me and then she went and bought me one. It is the perfect height for me. We put my mickey mouse in the seat and a bag of rice in the basket. The rice helps weight it down for me. I don't like it that much but I can walk behind it. If you notice in the picture I'm taking a step with my right foot :) So even though I don't like it, it is great therapy for me. I haven't heard from Detroit yet but as soon as I know something I will let you all know. I hope you enjoy the pictures of me playing in the mud. Can you tell how much I loved it :) Mommy said its great sensory therapy too.

Friday, August 5, 2011

Finally some results for you!!

Sorry it took so long but my trip to Boston was not a fun one at all. I did great on the plane ride and slept great in the hotel room. The next day is when it started. I arrived at the hospital at 12:00 for a 1:00 admission. Since we were early mommy took me to the cafe to eat. We went back to the admissions office at 12:45. They didn't take me to my hospital room until 3:00. When I got to the floor they said my room wasn't ready. They put us in a holding room until about 4:30. While I was in the holding room they came and got me to put my leads on. I always hate it but I gave them a hard time. I screamed the entire 30 minutes. It was awful. I kept looking at mommy to help but all she could do is lay next to me and hold my hands. As soon as I was done I started pulling at my head. They said that most kids forget about it after a while. Well I didn't forget. I kept pulling at it the entire time I was there. I did get the hat off at one point but they came and put it right back on. This made me really mad. Once we got settled in the room, I fell asleep. I was worn out from all the fighting and crying I did. Things were finally a little better and then they came in for my IV. It was 11:15 at night and I was extremely tired. I don't know why they waited so late but they did. So I started kicking and screaming again. They had to get a blanket and wrap me up so I couldn't fight them. By this point mommy and I were both crying. We tried to sleep that night but we didn't sleep much. The next day was suppose to be my PET scan at 8:00 am. Well I was having so many seizures that they decided at 11:30 that they couldn't do the scan. Did I mention I couldn't eat during this time and it was all for nothing. They let me eat and they said we would try the test the following day but not until 1. So the plan was to wake me up early, keep me awake, give me ativan, and let me sleep for two hours then do the PET. Well they woke me up way to early that morning, and I gave my mommy fits all day. I was tired and hungry and couldn't do either so I was just mad. They finally let me go to sleep. I slept about 30 minutes and they gave me the ativan. And would you know 30 minutes later I was wide awake having seizure after seizure after seizure. They decided to go ahead and do the PET. They would just have to read the results differently. Now the results part. The on call doctor told us some horrible things that I'm not even going to share because they were untrue. All it did was make my mommy cry. When my neurologist came in and explained things mommy felt much better. He said that my EEG didn't look much different than October. It actually looked a little better because in October I was having over 200 a day. This time I was having about 100 a day. He said the seizures are coming from the left side. They still can not identify a focal spot but they are left sided. I did have 3 from the right side in a 48 hour time. Not the news we wanted but that's very few considering the time frame. They are not sure exactly what type of seizure I'm having. According to the EEG it looks like tonic but tonic seizures usually last longer than my 1 second seizures. They are saying its probably more like myoclonic jerks because they are so short. Either way it doesn't matter. I'm having way to many seizure a day. The PET scan did not show anything abnormal. We pretty much expected this because we couldn't get the test run like we wanted. So what now. We are going to repeat the MRI and 48 hour EEG again next summer. In the meantime we are being referred to a neurologist in Detroit. The neurologist in Boston said that this doctor is the best for children like Jadon. He said that he can do a different kind of PET scan on Jadon that Boston can not do. He said that if anybody can help him it would be this doctor. My mommy already knew about this doctor when he said his name so we knew right away we wanted to go. So we will be traveling to Detroit sometime soon. Everything about me is so rare and different. We are praying that this doctor will be able to help me. Overall the doctors in Boston were impressed with how well I had developed since they saw me last. According to my EEG and the frequency of my seizures I really should not be doing as well as I am. So God is definitely answering our prayers.

Wednesday, August 3, 2011

Poem

My mommy is part of an online support group of families that have IS like me. Someone posted this today and she wanted me to share it. She said I'm such a blessing to my family. She just wishes she could get some relief for me from these seizures so I don't have to suffer. I promise I will update my page with the information from Boston. My neurologist is going to call us tomorrow with the final results and plan. Thanks for praying for me and enjoy the poem.

A Special Child

You weren’t like other children,
And God was well aware,
You’d need a caring family,
With love enough to share.

And so He sent you to us,
And much to our surprise,
You haven’t been a challenge,
But a blessing in disguise.
Your winning smiles and laughter,
The pleasures you impart,
Far outweigh your special needs,
And melt the coldest heart.
We’re proud that we’ve been chosen,
To help you learn and grow,
The job that you have brought us,
Is more than you can know.
A precious gift from Heaven,
A treasure from above,
A child who’s taught us many things,
But most of all- “Real Love”
Sorry I haven't been able to update. I'm not happy and we are not getting any good news. All bad. I had to fast yesterday for my PET which didn't get done bc of frequency of my seizures. So now I can't eat again today and my PET isn't until 1. I'll update as soon as I get definite results. Please pray for us. My mommy is exhausted and I'm just mad and ready to get out of here.

Sent from my iPhoner

Friday, July 29, 2011

Getting ready!!!


We are getting ready to leave for Boston. Our flight leaves Sunday at 1:30. It is a direct flight into Boston..Yay!!! We arrive in Boston at 5:55 which is 4:55 Louisiana time. It's just me and mommy and mommy is a little nervous about that. Mainly because she will get the results in Boston all by herself. Thank God for cell phones and skpye. We are staying at a hotel this time because family housing is booked. So yes a $60 dollar stay has turned into $400. We have to do what we have to though. There are several others who are in the hospital longer than I'm going to be in that need a place to stay too. We have been very blessed to get to stay in the family housing in the past. We know everything will work out. I'll keep everyone updated while we are there. I will be admitted on Monday at 1:00 pm. My Pet scan is Tuesday morning and then we will be released sometime Wednesday once we get the results. Please pray that they can find a way to stop these seizures. I really need some relief. Having 100 seizures a day is no fun :( I have to leave you with a happy. My PT was playing around yesterday and decided to put tape on my feet. It has made a huge difference. I'm able to feel my feet better and I'm standing straight up while holding on to things. I've been doing this for a while but I've never stood straight up and been as sturdy as I am now. It's the little tricks that make a huge difference. We are also going to start trying to increase my lamictal again. So tomorrow morning we will increase it by 5 mg. Please pray that the rash stays away. We don't want to deal with that again. Thanks for praying for me and my family. If you don't mind say a little prayer for my brother. He doesn't like it when we have to leave for the hospital. He really is a great big brother. Just look at the picture :)

Sunday, July 24, 2011

Goodbye Banzel



I've been doing really well since my last post. I have been on a banzel wean for a long time now. We stopped the wean for a few weeks because we thought it was increasing my seizures but it really wasn't. I just have my good days and bad. I took my last dose two days ago. We haven't noticed much increase in seizures. I may be having about 10 more or so a day but not enough to stay on the banzel. The banzel has been the only medicine that has ever worked for me. I started it last October when I was having over 200 spasms. It decreased them to about 90. That is actually the number we have been stuck on ever since then. Yes they go up and then they go down but on a normal basis I'm having about 90 a day. We just assumed it was the banzel still but we were wrong. I'm totally off of it and we haven't noticed any change in seizures. We go back to the neurologist in New Orleans in September. She will then start the vimpat wean. The only two medications I'm on right now is vimpat and lamictal. We are ready to get me off the vimpat because we haven't seen any change since we started this medicine. I'm only on 15mg of lamictal. We are stuck at that number due to the medication reaction that I had. We will start trying to increase it a little slower August 1. If I break out again we will stop it all together. Right now I'm on the least amount of medication that I've ever been on and guess what, I'm progressing more than ever right now. We always thought that the medicines were slowing my progress down and now we know for sure that they are. I don't think we will ever understand the medication thing. The only thing that explains everything is our faith and prayers. We believe that God is watching out for me and helping me fight this battle. Which leads me to what I've been doing this past week. I've been talking, talking, talking. I've been able to say bye, bye, da da, and ma ma for awhile now but only when I want to. I never would mimic you. Which in speech therapy is a problem. In fact my speech therapist decreased my time because I wasn't progressing. I know it doesn't make much sense, but it's an early steps rule. Please don't get me wrong, we love our speech therapist. She has gone above and beyond for us. That's why I'm glad to say that I've done nothing but progress in the speech area this week. I'm mimicking everything. I mean everything. My brother's laugh, my brother's screaming, ma ma, da da, bye bye, vowels sounds, and hand movements. My mommy and daddy are so proud of me. I get super excited when I mimic them. I've been trying for so long and I finally got it. I'm also getting up on my knees and rocking, rocking, rocking. Mommy thinks I'm going to take off any day now. Other than that I've been having lots of fun this week. My Paw and Mar took me camping. We had lots of fun. My mommy and Shelby took me down the water slide at the campground. It was so much fun. I would start kicking my feet and laughing when we started to go again. I left you a picture of my mommy and I coming down the slide. Just look at that smile on my face. I also loved splashing in the water at the splash park. I sat and played with my Mar and my brother for a long time in the water. The second picture is of me splashing at the splash park. So as you can see I've been very busy this past week. I leave next Sunday for Boston. We are getting really nervous about this so please pray for us. We really want these seizures to stop. I don't know what it's like to go a day without seizures. Everyday my brain is attacked by this horrible monster. Even though I'm attacked daily, I continue to stay strong, to fight, and to progress more than expected. Thanks everyone for praying for me. Your prayers are the reason I'm doing so well. I love each and everyone of you dearly for the support that you give me.

Thursday, July 14, 2011

Boston dates and getting stronger.


We finally got our dates for Boston. My mommy and I will be leaving July 31. I will be admitted for a 48 hour EEG on August 1. I will have my PET scan done August 2nd. Then I will be released August 3rd and I will come home August 4th. My daddy is going to stay home with my brother this time. So it will just be me and mom but we will be fine. Boston has become our 2nd home so we know how to stay safe. Other than that I continue to make progress everyday it seems like. I've always been able to get into the crawling position with assistants. Well just look at my picture. I'm doing it all by myself. No rice and no one making me. Wow this is huge progress for me. God is truly awesome.

Monday, July 11, 2011

Medication reaction/new tricks


Things have been crazy the last couple of days. I had a bad reaction to the lamictal. I broke out in a rash. It was horrible and I was miserable. My neurologist called to check on me twice a day. So you know it was bad if the neurologist was calling twice a day. We stopped the lamictal and with 48 hours the rash was gone. We have started the lamictal again and so for so good. We went back down to 15 mg twice a day. We will increase it again in 2 weeks but this time only by 5mg instead of 10mg. If I break out we will stop using it. So we will see how I do in two weeks. I still do not have dates for Boston. My orders are in and we are waiting for the hospital to call and schedule it. It is taking longer than expected because we want to have both test done while in the hospital instead of having to go twice. I will let you know dates when I find them out. Thanks for praying for me. I'm leaving you a video of me shaking my head yes. I'm also leaving a picture of me holding on to the fence and standing. I'm also pointing to my head when you ask me where is my head. I will have to get a video and share that soon. So even with the horrible rash, I'm making progress. I'm such an amazing little guy. My family is so proud of my development.

Wednesday, July 6, 2011

Neurology Appointment/Back to Boston

My appointment at Children's in NOLA didn't go as well as expected. We got there and everything was going fine. We talked about my 3T MRI results and the test that I need, medications, development,etc. She then told us that they could not do the PET scan that I need at Children's because they do not have the equipment. So mommy started calling other local hospitals to see if we could find someone that did PET scanning. The problem isn't finding a hospital with PET scanning. Several hospitals have that. It's finding a hospital that can do PET scanning on a two year old safely. Well she found one at Our Lady of the Lake Children's Hospital. Seemed perfect but of course they can't do it without orders. We knew this and didn't think it would be a problem. So mommy called my neurologist and she said she can't write the anesthesia orders that are required because she is not affiliated with that hospital. Yes we could go see another neurologist at Our Lady of the Lake and then if that neurologist will do it, he can write the orders. We don't want to go to another neurologist. Especially after some of the things that Our Lady of the Lake told us about PET scanning. It's just not worth it. I have to go somewhere that I trust and know that the test will be done correctly and accurately. We are doing the test to see if I qualify for brain surgery. Someone who does this on a regular basis needs to do this test and evaluate it. So with all of that said we are going back to Boston Children's for these test. They evaluate kids daily for surgery and we know that we will be in the best hands there. My mommy was so mad yesterday because we can't get the test done here that we need. After she talked to one of here friends she realized it is just part of God's plan. We believe that he wants us in Boston and that's where we are going. I will know definite dates later today or sometime tomorrow. It will be within the next month. I'll keep you posted. I have to share this verse with you. Our preacher talked about it this week in his sermon and it has stuck with my mommy all week. Just knowing that He is our strength helps us get through the tough times.
Psalms 27:1- The LORD is my light and my salvation; whom shall I fear? the LORD is the strength of my life; of whom shall I be afraid?
Please continue to pray for me. Love ya, Jadon

Friday, July 1, 2011

Test Results

We got my test results back this morning. My MRI is not normal anymore. When we did it in October, they said it was normal but questionable in one area. Well like they expected my left hemisphere is were the problem is located. My right hemisphere is normal. My left hemisphere is significantly delayed with more water than I'm suppose to have and less fat. This means possible dysplasia but we can't see on MRI due to the excessive water blocking the white matter. So we are going to come home and get a PET scan done as well as a 24 hour video EEG to see if I qualify for surgery. The neurologist didn't give us much hope that medicine will ever help me. I have already had 2 rounds of ACTH, 2 rounds of prednisolone, IV steroids, topamax, keppra, clobazam, clonazepam, trileptal, vimpat, banzel,lamictal, and the ketogenic diet. Of those therapies 5 have increased seizures, others have done nothing, and one helped but then stopped after a while. So based on my history of anticonvulsant medicines, it is not likely that we will find one to control my seizures. We will continue to try though. With God all things are possible. He basically told us today that surgery would probably be my best option if the PET and 24 hour EEG reflect the MRI. We don't really know what to think about this. Yes it would be awesome if they could go in and remove the part of my brain that is causing all this but it is very scary. We know that God will continue to direct our path as I continue on my journey.

Thursday, June 30, 2011

A day to get our minds off things.









We decided to have a little fun today while we wait to see the doctor tomorrow. We needed to get out to get our minds off of everything. We went to the New England Aquarium this morning. We had a great time. We saw lots of fish, penguins, and seals. I slept through the seal show. I liked trying to catch the fish the best. After the aquarium, we came back to the room and took a nap. After our nap we went to Mission Hill Park. I loved being at the park. I even found some dirt to dig in while my brother played in the spash park. I'm leaving a few pics of our adventure today. My appointment with the neurologist is at 9:00 am tomorrow that's 8:00 our time. I will update as soon as I can. Thanks for praying.

Wednesday, June 29, 2011

MRI done now we wait.



Yesterday was a long day but we made it. Our flight left at 6:00 am and we walked on the plane at 5:59. Mommy had me on her hip and Jacob holding her hand running to the runway while daddy got the bags. It was crazy but we made it. Once we got to Baltimore we had time to get a snack and then it was time to load again. We got loaded and on the runway and then they announced we were under an hour delay due to weather. So we finally made it to Boston an hour later than expected. We got to the room and we all took a nap. We had time to go eat dinner at the harbor last night. Everything is so beautiful here. The weather is great this time of the year. In the mid 70s during the day and not cooler than 68 at night. Now on to my test. I made it to the hospital this morning around 10:30. They took me back shortly after 11. Everything was going great and they said they were behind an hour. Well mommy put me to sleep and I slept until they took me back. They gave me my sleepy medicine while I was asleep. When I woke up in recovery my mommy was already there. I did a great job and woke up the first time they tried to get me up. Now we have to wait to find out the results. We see the neurologist first thing Friday morning. I will update you as soon as we know something. The pictures I left are of my brother, mommy, and me at the entrance to the hospital. The other is of my brother and me in our room at the Devin Nicole house. Notice our shirts. My daddy and brother bought it for me at Fenway Park today. I want to thank you for all the support. We can definitely feel your support here. Thanks for praying and please continue to do so. I love you all, Jadon

Monday, June 27, 2011

Tomorrow is the day.

We leave to go to Boston tomorrow. Everyone is going this time. My brother is so excited about flying in morning. Our flight leaves at 6am from New Orleans. It's going to be an early morning. We will arrive in Boston at 12:15. Once we get to the house we will probably take a nap. Then we will have time to go do something tomorrow night. My 3T MRI is Wednesday at 11:15. That is 10:15 in Louisiana. If you think about it, please say a prayer for me around that time. We have the day off Thursday. If I'm feeling ok, we will go do some touring in Boston Thursday. Friday we meet with the neurologist at 9:00. He will explain the results of the MRI and then tell us what he thinks we should do next. We will have the rest of the day Friday to go and do some things. We then come home Saturday. Please pray for safe travel as well as great results. I will keep everyone updated while we are there. Thanks for your prayers.

Friday, June 24, 2011

Seizures suck!!

The title explains it all. Yes seizures suck. They are so unpredictable. Mine are so unpredictable that we don't know what meds work and what meds don't work. My mommy and daddy think I might just do better with no meds. That way I won't have to fight against side effects and seizures. I don't know the answer. I had two great days after the lamictal increase and then bam my seizures are right back to normal. So now the question is was it the lamictal increase or did I just have two great days. Who knows. We will continue to increase the lamictal for the next month. So yet again we just wait and see. It's going to be interesting what the doctors say in Boston. Mommy has already started getting things ready. I require alot of planning. Please continue to pray for me. The great news is that I'm making great progress this summer :) We are very thankful for this and we thank God everyday for what he is doing in my life. We just wish we could get control of the seizures. It is horrible to watch me have so many everyday.

Wednesday, June 22, 2011

Keeping our fingers crossed :)

Other than being fussy the lamictal increase is working great. It has cut my seizures done in half. I've gone from having 80-100 to about 40-50. Yay!!!!! Now the question is will it continue to work. We are praying that it will. We still have to increase it two more times to get me on the therapeutic dose. So our hope in the medicine has gone from 0 to wow maybe this will work. We are already at half the seizures and still have more increases left. You know when my seizures go down that means new tricks. Well I have several new tricks. The first one is signing the word more. I have always signed more but it was more like a clap than the actual sign. Well I'm doing the sign correctly now which means more control of my hands. I'm also getting frustrated. I just want to do everything my big brother is doing but I just can't. My family is great about accommodating me so that I can do as much as possible. Even if it means they have to hold me and do it with me. I'm also getting frustrated with my speech. I'm trying so hard to tell everyone what I want, I just can't. I will keep trying hard and hopefully I will get more words soon. So I saved the best trick for last...Drum roll please...I'm pulling up!!!! I can only make it to my knees. I try to stand from the knee position but I fall down. We know I will get it soon because I'm determined. I just started doing this yesterday and I woke up doing it this morning. So all great things around here the last couple of days. The only downfall to this is the side effects of the lamictal. I'm very fussy and I'm waking up for about an hour during the night. The fussiness will stop once I get used to the medicine. We are hoping I will start sleeping through the night again too but hey we will take it. An hour a night with few seizures is much better than several times a night with seizures all the time. Please continue to pray for me. We are leaving next Tuesday for Boston. So we need lots of prayers!!!

Saturday, June 18, 2011

Feeling better, a new trick, and getting ready for Boston!!


So sorry that I haven't posted in 10 days. I don't know where the time has gone. Well I'm feeling much better. I was determined to drink my liquids this time. I stayed out of the hospital and only ran fever for 3 days. Round 2 of adno was much easier than round 1. So what have I been doing? I'm moving all around on my stomach. I keep trying to push up to the crawling position. I will get it soon. All I want to do is get down now. It doesn't matter where I am, I want to be on the floor. (Yes the baby that used to scream when put down, now wants to be on the floor all the time. Great progress.) I'm able to move wherever I want to go. I either scoot on my stomach or I scoot on my butt. Today my mommy put me in my room. She went to put some clothes in the washroom and when she came back I was in the hall. I'm also able to scoot to someone when I want them to pick me up. It makes my mommy really happy when I scoot to her. I started drinking out of a straw yesterday. I think its hilarious when I do this and I clap for myself. As far as seizures, well you know they just won't leave me alone. Some days they are so bad that I stop talking and all I want to do is sleep. My neurologist said that we could start going through the medicine list again in hopes that one will work this time. Mommy and daddy decided they didn't want to do that. So now we are waiting to see if the lamictal will help. So far it hasn't helped at all. We increase it again on Monday. We leave in 10 days to go to Boston. We are ready to see what my neurologist in Boston has to say. I have made so much progress since the last time he saw me. When you pray for me, please start praying for our Boston trip. I'm leaving you a picture of me playing in the dirt with lightening. Like I said early in the post. I want down and as you can tell the dirt is one of my favorite things to play in :)

Wednesday, June 8, 2011

Home but sick again :(

Sorry I didn't update when we got home. We made it home Saturday afternoon because the steroid wasn't working. My seizures are continuing to get worse everyday. We thought it might be the increase in lamictal but I started running fever today. Mommy brought me to the pediatrician and I have adno virus which is causing me to have high fever and red throat. You probably remember that I was in the hospital a little over a month ago with this virus. We are doing our best to stay out the hospital this time. The pediatrician said to keep pushing as much liquids as possible and keep our fingers crossed I don't have to be admitted again. The good news is I have been drinking some fluids today so I'm not dehydrated at this point. The pediatrician said I probably picked it up at the hospital because that is the number 1 virus in the hospitals right now. So frustrating that I went in the hospital to try and get better and the steroid didn't work and I got sick because of it. Please pray that I will stay hydrated and feel better soon!!!

Friday, June 3, 2011

Hospital Day 3

Things are not looking to great for me. I'm still having alot of seizures. The only change is the intensity of them. They are going to give me the steroid tonight and tomorrow morning. If they haven't decreased by then we will be coming home a day early. So there you go another medicine that did not work. I don't know what to do anymore. We are so tired of watching me have seizures everyday of my life. I guess we have to be thankful for the progress I'm making and pray that I will continue to develop. Maybe one day we will have some control of these horrible things. Our next step in my journey is to go to Boston at the end of the month. By that time I will be on enough lamictal to know if it is working. We will then wean vimpat and start vagabatrin when we get back. This is the medicine that can effect my eyes. I really didn't want to try this medicine but it is only fair to try it for a month and see if it will help. Please pray for me and my family!!!

Thursday, June 2, 2011

Hospital Day 2


Today has been a better day for me. I'm not nearly as fussy as yesterday. My daddy and brother came to visit me today. I was so excited to see them. Jacob wanted to take me home and I sure wanted to go. My seizures haven't been any better today. Still less intense but not much decrease. My neurologist said if we do not see any more improvement by tomorrow afternoon, we will stop the steroid. So we will just have to wait and see how I do tomorrow. We are trying to stay positive. I did get to go outside this afternoon. Mommy and I sat by the fountain for about an hour and I loved it. Thanks for praying. Love ya, Jadon

Wednesday, June 1, 2011

Hospital Day 1



Today has definitely been a long day. We got to the ER at 8:30 this morning. My neurologist came and wrote all my orders as soon as she knew we where here. That was the easy part. They then came to do my IV. Well of course they couldn't get it. I don't know why some people have so much trouble and others can just get it the first time with no problems. They were finally able to get it and I was so worn out from screaming, I feel asleep. I slept in the ER for 3 hours. We finally were able to go to our room after waiting 4 1/2 hours. The hospital is full so we had to wait for someone to leave. I got my first dose of steroids in the ER. It's too early to tell if it is working but my seizures have not been as intense this afternoon. I will get my 2nd dose tonight. My neurologist said we might see a difference after the 2nd dose but it may take longer before we notice a change. I promise to keep you all updated. I have been very fussy but I did smile some today. The first picture is of me playing on the mat in my room. The second is of me looking out the hospital window. Thanks for praying for me and please continue to pray. I love my prayer warriors. You help me and my family so much!!!

Tuesday, May 31, 2011

Getting admitted in the morning.


I'm getting admitted in the morning to Children's Hospital in New Orleans. They are going to do the 5 day steroid treatment. My seizures started increasing Sunday and they haven't slowed down. My neurologist wants to go ahead and try the steroid treatment. Please pray for me. We would love for this to stop these seizures. We know God has a plan and we are just trusting him right now. I will keep everyone posted while I'm in the hospital. Thanks for praying. If you can say a prayer around 8:30 in the morning. That's what time we have to be there. I'm leaving you a picture of me sleeping with my big brother. I'm sure going to miss him this week. Talk to ya soon. Love you all, Jadon

Saturday, May 28, 2011

The day that got better.

Yesterday didn't start off to well. We received news that family housing in Boston was booked the dates that we requested. Well later that day mommy called them and they had our dates wrong. Can you believe that? Well when mommy told them the correct dates, it was available. This saved us around 500 dollars. Later that day my cousin helped us with our flights. We are so thankful for the blessings that we received yesterday. God really does have a plan. Now we can go to Boston and get the test we need. So here is the plan. We will leave June 28. We will be staying at the house on Autumn. My 3T MRI is June 29. We will then see my neurologist in Boston on July 1. He will go over the results of the MRI as well as review whats been going on since our last visit. He will then make suggestions based on the results of the MRI as well as my current medical information. We will return home July 2. We are very eager to get this test done and see what our neurologist in Boston has to say. My seizures have been around 40 or 50. It's still to soon but we think that the lamictal is helping some. Thanks everyone for your prayers they are really helping.

Tuesday, May 24, 2011

Neurologist appointment and it's back to Boston.

My appointment went really well today. We are going to increase my
lamictal a little faster since I'm doing well with it. We want to get
me on a high enough dose of lamictal to see if it is going to work. We
go back to the Neuroligist June 28. If the lamictal works we won't do
the IV steriod. If it doesn't we will do the steroids the week of July
5. She said if my seizures get out of control we will do the IV
steriods at that point. We also have to get in touch with Boston to
get my 3T MRI scheduled. She wants us to get that repeated. Of course
we have to go to Boston because they have the better equipment. My
mommy is going to call and get that scheduled tomorrow. Thanks for
praying and I will keep you all updated.

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Sunday, May 22, 2011

Making progress

I'm still doing ok. I had a bad morning this morning having 50 spasms
when I woke up but things slowed down after that. I'm officially
moving around on my belly. It takes all my strength and I can't go
very far but I'm moving forward. Yay!!! We are so excited with my
progress I'm making. I'm able to go anywear I want in a room. I scoot
in the sitting position or I lay down and sit back up until I reach
where I'm trying to go. Im basically a wiggle worm. I dont like
sitting still anymore :) My mommy has been taking me swimming in the
afternoons. I love it. I kick my legs and splash. I become very vocal
in the water for some reason. Mommy said swimming is going to be great
therapy for me this summer. I have a neurologist appointment Tuesday.
We are going to decide if I'm going to do the 5 day IV steriods.
Please keep my doctors and family in your prayers as we have to make
yet another difficult decision. I'll update everyone Tuesday night.
Thanks for your prayers!!!

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Sunday, May 15, 2011

A Sunday Happy

I have learned a new trick. When my mommy puts me in my car seat, I start waving bye bye. I've been waving bye bye for a while now, but now I understand that when we get in the car we are going bye bye. I've been doing it every time I get in my car seat. I'm just too smart. My family is so proud of me. I keep showing great cognitive skills. I'm also signing eat more and more everyday. I really wish I could find the ER doctor that told us not to expect much. She couldn't believe that I was sitting up the day she saw me. She really wouldn't believe what I'm doing now. I would love for her to see me today. As far as my cold, I'm much better today. Pray that I keep getting better. Thanks for praying for me everyone. Your prayers are helping me do the impossible.

Saturday, May 14, 2011

Has it really been a week?


Sorry I haven't updated you. I have been busy helping my daddy build a fence this week...LOL I had a really good week. My seizures are staying around 70 a day. We haven't noticed a huge increase since we weaned steriods. Hey we are still under 100. We were fighting 200 a one time. We are getting there. We stopped the banzel wean at 300 mg. We were trying to get down to 200 but my seizures increased when we lowered the dose to 200mg. We now know that 300mg is the dose I need to be on. We increased my lamictal yesterday. Of course I'm still not on enough of this to know if it is going to work. So far there has been no change, but we were expecting that. I started sneezing a lot today and my nose is running. I really hope I'm not getting sick again. Please pray that this cold will go away soon. We have an appointment with my neurologist on the 24 so I will let you know what they say. I'm leaving you a picture of me on my new wheels. I can go backwards really well. I can move forward, but I go really slow. This is going to be a great therapy toy for me. Thanks you Katie and Coye!! I love it!!!!

Monday, May 2, 2011

Home:)

We made it home from the hospital. I was so ready to leave. I kept saying bye bye bye most of the day. After the nurse took my IV out, I started clapping and laughing. My test results came back today. I do not have mono. Praise the Lord!!!! I do have adenovirus. Adenovirus effects the respiratory system. In adults its like a common cold but it can make babies very sick. The virus also caused me to get ear infections in both ears and a throat infection. They gave me antibiotics through IV today and then I got to come home. I'm much better today. I ate 3 meals today. I'm playing on the floor. It's amazing how much I perked up throughout the day. The doctors said it will take about a week for me to get all my strength back. Thanks for praying for me. I know your prayers helped me get better so quickly. Oh and just so you know. My seizures have been awful. They always get bad when I'm sick but they were so strong this time. They are also much better today. In fact when I woke up from my nap this afternoon, I didn't have any. So we are praying that I continue to get better and that my seizures continue to get better too!!

Here is a little note from my mommy.
If you get a chance, listen to the new song on this page. The title is Blessings by Laura Story. It's a great song about the trials in this life and how they just may be our blessings in disguise. I can't tell you how much of a blessing Jadon has been to me and my family. He has taught us so much about just what is important in this life. I'm so glad that I'm able to share this little miracle that God has sent us with you all. Thank you all so much for praying for him and my family. God is truly blessing my family through this difficult time in our life. We can't wait to see what He is going to continue to do in Jadon's life :)

Sunday, May 1, 2011

Hospital Update

I'm sad to say that I have been admitted to the hospital. We are at St. Tammany in the peds unit. I got really sick Saturday morning. My mommy called my pediatrician. She sent us to lake after hours. They said my ears and throat were clear and they ruled it a virus. They said if I didn't get any better to go to the ER. I continued to get worse throughout the day. We talked to the pediatrician again and she said to go to the ER. The main reason she wanted us to go was because of the side effects of the lamictal and dehydration. We got to the ER around 530 pm and I didn't get to my room until 12 am. It was a very long night. They tested me for flu, strep, and did a CBC. Everything came back negative. They said that it's not anything to do with the lamictal. My blood work showed that my white blood count is up. Right now they are giving me IV fluids since I'm not eating or drinking. I was dehydrated when we got here last night. The doctor came in this morning and said my throat was full of pus. How lake after hours missed that and the ER doctor is beyond me. They retested me for strep and it came back negative. They are now testing me for mono and adenovirus. We will not know any of these results until tomorrow. I will be staying another night. Please pray that I get better soon!!!!

Thursday, April 28, 2011

Not much change.

Things are staying about the same for me this week. I'm still having
good days and bad. The bad days that I refer to are still good
compared to before steriods. A good day now consist of 30 or fewer
spasms and a bad day about 60. I'm still learning news things. I
learned to take toys out of a bucket and how to put them back in. I'm chewing my food much better. I'm
very happy and alert. I'm having more seizures than my family wants
but we are satisfied with the amount of progress I'm making so
quickly. Its still too early to say if the new medicine is working.
All it's doing right now is making my mom a nervous wreck. She said
when my brother burned his hands there was a little girl in the
hospital room next to him who had gotten burned from taking lamictal.
So she has seen what this medicine can do. Please pray that I continue
to make progress and that my seizures don't increase. My brain needs
for these to stop.

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Monday, April 25, 2011

Neuro appointment


We had a great appointment with our neurologist today. We are going to make several changes in the next month. The first thing we are going to do is lower my banzel medicine. The last couple of times we increased the dose, it didn't help the spasms. We are going to decrease it to a more reasonable dose for my weight and age. She said that alot of these drugs reach their maximum potential and do not work past that. Basically we are going back to the banzels maximum potential. We are also starting a new medicine called lamictal. It will take 2 months to get on the appropriate dose of lamictal. We decided not to go with zonegran since it is in the same family as topamax. Topamax did not help me so we decided lamictal. The main side effect of lamictal is a rash. If I get a rash and continue to take the lamictal it could burn my skin. So we have to be very carefully with this new medicine. Since I get rashes very easily, we are asking everyone to not wear perfume and make sure you wash your clothes with all free and clear if you are going to be around me. This is only for about a month or two until we know I'm not going to get a rash. No we aren't being overly protective, we have to make sure the rash is due to the medicine and not perfume. We are going back to see my neurologist in another month. At that point we will see how I'm doing. We will then start to wean vimpat since it hasn't helped much. We will also decide if we are going to do a round of high dose IV steroids. If we do this, I will be in the hospital for 5 days. My neurologist was impressed with how much the prednisolone helped this round. You see that was the first medicine that we tried and it didn't touch the spasms the first round. She also said it is a very low dose of steroid compared to the ACTH that I had in the beginning. In all reality it shouldn't have helped as much as it did and it helped tremendously. So she is thinking that we might can knock these spasms out with a high dose of IV steroids. She wants to give my body time to recover from prednisolone before we give more steroids. She said the reason I can't stay on steroids for a long period of time is due to all the side effects. Just a few are shrinking of the brain, fluid in the brain, diabetes, high blood pressure, wiping out your immune system, and bone weakness. As you can see we spent a long time discussing our new plan. I'm very satisfied with the new plan. We just have to wait and see now. Overall she was very impressed with how well I'm doing. I say it all the time but its totally amazing what I"m doing compared to all the seizures that I have on a daily basis. Notice my shirt in the picture. I will definitely stay strong, I will fight, and I will win!!! Thanks for praying for me. Your prayers are helping me become a miracle.

Wednesday, April 20, 2011

The steriod wean has begun.

We have started to decrease my steriods. I'm only getting them 3 times
a day right now. Tomorrow we wean to 2 times a day. My spasms have not
increased any. I'm having about 30-40 a day. They are not very
intense. So the steroids have helped me alot. My therapist have even
noticed how much stronger I'm getting. I haven't had any side effects
either. My blood pressure has been fine, I haven't gained any weight,
and I'm definitely not irritable. In fact I'm much happier. We don't
know what the plan is from here. I go see my neurologist Monday so we
will see what she says. Please pray that we will find the right
medicine to stop these things with few side effects. I have shown so
much potential these last 3 weeks. It's so sad that we can't stop
these and allow my brain to work correctly. Keep praying everyone.
Your prayers are working. I'm doing much more than expected.
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Monday, April 11, 2011

The start of week two on steriods.

I slept all night last night. Yes all night!!!! I'm having anywhere
from 40-60 spasms a day. Still way to many:( I'm doing several new
things though. I'm saying ma not mama but ma. Mommy said that's good
enough for her. I'm also saying hey. We were eating at a restaurant
today and someone walked through the door. I immediately said hey. I
leave the y sound off but its still great news that I'm learning new
words. I've definitely perfected da da and bye bye. I say those
several times a day :) If you ask me where is Mickey mouse, I look at
the tv and laugh. I've learned to push myself to the sitting postion
from my tummy. So we really aren't where we want to be with seizure
control but we are very excited about the new things I'm doing. Please
pray that we can get better control. We have cut these spasms in half
with this steriod and look at the new things I'm doing. Mommy says she
can't tell you how frustrating it is to know the potential your child
has and to have to watch the seizure monster take that away. We just
have to be thankful that I'm developing, even if it is slow. We also
have to believe that one day we will get control of these. I'm a
fighter and I will win in the end.
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Wednesday, April 6, 2011

Stronger

This is a picture of me digging in the wishing well with my brother. I
stood there and played for a very long time. Some of the side effects
to steriod are weaker muscles strength and irritability. Well i'm
stronger, happier, and sleeping better. Yes I know it sounds crazy but
we are asuming the steriods are decreasing the seizure activity so
much that my brain can focus better and rest. I'm having about 50
spasms a day but they are mainly when I first wake up and then a few
here and there. I look so much better. Everybody that sees me says how
good I look. We are still praying that the spasms continue to
decrease. Please continue to pray for me!!!

Sunday, April 3, 2011

Steriod update

Day 2 of steriods and I'm already doing much better. I'm still having
seizures, they just aren't as many or as intense. I woke up 1 time
last night and had about 30 spasms. We have noticed its not really
the amount of seizures that I have but the intensity of them. I can
have 60 not intense spasms and I do well. It's when I have 60 intense
ones when I have more trouble. So anyway, so far so good. We pray that
I will continue to keep getting better. I really want all the intense
ones to go away. Thanks for praying for me!!!! Mommy says she has her
happy baby back that's not getting attacked by seizures all day and
all night. She said not to worry, her and daddy will continue to do
everything possible to get these seizures to leave me alone.

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Friday, April 1, 2011

Here we go again

To all of my prayer warriors. I really need your prayers. My doctor is
putting me on prednisolone steriod again. I will be on this steriod
for 2 months. Please pray that this will work this time. I really need
a break. My seizures are keeping me up throughout the night and I'm
having them throughout the day. So please pray that these seizures
will go away. We know that our God can heal me and we know that
starting these steriods are in his plan. Now we have to patiently
wait while we follow his plan for my life. Please take the time to say
the prayer below.

Dear God,
We know that you have a plan for Jadon. We pray that the steriods
will give him relief. We pray that he will have few side effects and
that he will not get too agitated. Lord we know that you are healer
and we pray for healing for sweet Jadon. Amen

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Monday, March 28, 2011

Medicine changes and new tricks

The increase in vimpat has made my seizures worse. They are more
intense and they are waking me up at night. We are going to decrease
my vimpat and increase my banzel some more. Hopefully this will help.
So here we go again. Please pray that they decrease. On a good note
I'm saying bye bye now. I'm more vocal than ever. I'm saying dada one
minute and bye bye the next. I'm also blowing kisses. Im just too
sweet. Love ya and thanks for praying.
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