Christmas and more

I hope everyone had a great Christmas. I sure did. It was definitely much better than last year. Last year my brother and I were both in the hospital with RSV and my brother had pneumonia so this Christmas was much better. I went to my Mar and Paw's house Christmas eve. After we opened presents and ate we went to Paw Paw Ike's house. I even watched fire works. Can you believe I liked these? They are so loud and I was laughing and having a great time. I left a picture of me watching the fireworks. The other pictures are of Christmas morning. I love my new car and I liked the paper the best. After we had Christmas at our house we went to Aunt Rae Rae's house in New Orleans. Uncle Michael cooked lunch for us and we got to see my Mimi and her side of the family. It was really a great Christmas. Now on to my seizures. We have noticed a little decrease. I'm having about 100 seizures a day. Yesterday morning I woke up and only had 32 by lunch. Well after lunch I had a cluster of 60. Yes VERY upsetting and disappointing. Today I've already had about 40 and it's only 8:00. My seizures are so unpredictable and so random. We have done nothing different the last two days but my seizures are so different. Basically we celebrated me only have 32 yesterday morning and then the disappointment but we will celebrate the good times even if it's followed by disappointment. I got my new meals from Boston and feeding time is much easier. I now each a meat and then a baby food vegetable or fruit. I love eating them and the portion size is much better. We so wish we would have been able to do this two months ago. I also got my new stuff from my herbologist. I started it yesterday so I will let you know how I do on the new stuff. I have gotten the ok from our dietitian to use these supplements so we know they are not messing up the diet. I gotta go because I have blood work today to make sure my carbon dioxide level is better. I will update you very soon. Thanks for praying for me!!!

Boston Results.

We are now home and finally get to relax and spend time with family. Our appointment went really well in Boston. We are making a few changes to my diet. We are going to spread my meals out so that I get to eat 5 times a day. Hopefully that will help me eat my food. We are also getting some meals planned that have baby food vegetables and fruits. By doing this we hope to get me to eat some more fruits and vegetables. Right now I'm only eating apple sauce. We still haven't noticed any change in my seizures. The neurologist want to give it another 2-3 months. If we don't see any change we will stop the diet. I have been on it for about 2 month already. They said the diet just doesn't work on some people. We are not giving up yet though. We will continue to try and pray that we can get these seizures down. I did go a little over a week without seizures at night but they came back a couple of nights ago. We got some more test results that they did back in October. The genetic test that we did came back normal. Now we are just waiting on the CDKL 5 genetic test to come back. We got the official results of my 3T MRI. While we were there they said everything looked normal. Well when the neurologist got together and studied it they found a POSSIBLE malformation in the left post lobe of my brain. They are not sure what this is because I'm so little. They want to repeat the 3T MRI sometime in April once my brain has grown some more. They are hoping it will be clearer then and then they will be able to determine what the are seeing. They also want me to go see an orthopedic for my feet. My toes turn down a little and they want us to get it checked out. While I was in Boston they did more blood work. My blood work showed that my CO2 level is low so they started me on PolyCitra to help regulate my CO2. They said this is common when babies are on the ketogenic diet and take topamax. My blood sugar was also a little low but nothing to be concerned about. So, so far all this diet has done is cause more problems. All you keto fans don't get mad at me. I know you have to give it time but its been horrible for us. We are working on making it better. I am still on the new medicine Vimpat. It has not helped yet but my neurologist still want to give it some more time. So it looks like we have another failed medication. Here is the list of failed medicines:
1. klonopin
2. prednisolone
3. ACTH (2 rounds)- didn't help seizures but helped EEG
4. keppra
5. topamax
6. trileptal
7. clobazam
8. vimpat
9. banzel
All of these helped at first and then stopped. I'm still on keppra, topamax, banzel, and vimpat. We are slowly getting rid of the ones that aren't working. So I think I have updated you on everything. Please continue to pray for me. I keep thinking that we didn't get our miracle in 2010 but the more I thought about it, I think we really did. I went from not being able to hold my head up to sitting up and being just as alert as a normal 15 month old. So no we didn't get our seizure miracle but we came farther than anyone expected. I still believe we will get our seizure miracle one day. I'm leaving you with a picture of me trying to catch the snow at the airport in Boston. It was absolutely beautiful. Everyone have a great Christmas.

Alot of catching up

Sorry I haven't updated but I have not been able to get to a computer. I've been really busy. Let me go back about a week ago. We were scheduled to go to Boston and we never made it due to the weather. We did get to go to Houston Thursday. We saw the herbologist. She showed us some different massages to do to help stimulate my brain. She also showed my mommy how to use the creams and supplements that she sent. She wants to train my brain to ignore the seizure area. If we can do this, then the seizures will slow down. She showed us a 14 point pressure point routine that helps send messages to my brain. It basically helps the brain to work. We are very impressed with the knowledge that this herbologist has and we believe she can help me get better. While we were in Houston we stayed with Mr. Andy and Mrs. Rhonda Cobb. We were so thankful to get to stay and visit with them. We even had time to go see Santa while we were there. We also got lots of good information from the herbologist. We got home Friday night and left again today. We are now in Boston. We are staying at the Devin Nicole house tonight and our appointment is in the morning. We will see a neurologist, dietitian, and nurse. We are excited about seeing this keto team and we hope they can help me with this diet. Please pray that we have a great appointment tomorrow. Now a quick update on my seizures. My seizures are a little better. I haven't had any at night in over a week. I'm still having alot during the day. Somewhere between 70-90. So they are better but still way to many. I'm definitely more alert since I started the supplements from the herbologist so that is great news. I'm also almost completely off my keppra. We think the keppra was increasing my seizures. As soon as we lowered it I stopped having seizures at night. So as you can see we have been very busy. Sorry I haven't update my prayer warriors. I'll try to do better :) We love all of you and please continue to pray for me!!!

Home

I made it home this afternoon. The main reason for my admission was to get the medicine in my system quickly. That way we didn't have to wait a month to see if it works. So far we haven't noticed a difference in seizures. I started the medicine orally tonight. I will be on it for a week and if we do not see any change we will stop it. This new medicine is called Vimpat (Lacosamide). They are also taking me off of keppra. I'm on too many medicines and they are not working, so we are slowly getting rid of the ones that are not working. Our neurologist is back and says we have other medicines we can try before we have to try Sabril. The bad news is with each medicine that doesn't work there is a less chance that the next one will work. The other bad thing is we have tried the meds with few side effects. Out of the three she wants to try one can effect the liver, another bone marrow, and of course the sabril which can effect the vision. So how do you pick which one you want to try with those kinds of side effects. Basically we are all very sad that we are in this situation. This includes my neurologist. She is really trying to get these seizures under control. It's very frustrating. My brother even says "Aww Jadon don't do that". It's very sad that a 3 year old can recognize them. It makes my mom mad now. She use to say well we will try this or do this. We don't know what else to do and it makes us mad. I'm sure this feeling will go away but I can tell you its very rough on my family right now. We are having to make decisions that no one should have to make. We know God has a plan but it is hard. We have been patient for almost a year and it's horrible to watch me have hundreds of seizures a day. We will remain faithful, continue to trust him, and pray. He is the best medicine for me right now. We will also thank him for allowing me to be so alert, happy, and developing even if its at a slow rate. Thanks for all your prayers. My family appreciates them more than you know. We do leave Sunday for Boston. We will see the ketogenic diet team. So please pray for our trip. Love you all, Jadon

I'm updating from my phone so hopefully this works. I was admitted to
childrens hospital to start iv medicines to help lower my seizures. I
don't know how long we will be here. The neurologist said probably a
couple of days. I'll keep you updated. Please pray for me.
Sent from my iPhoner

I just love this picture :)

Well mommy and daddy got a new puppy for my brother and I. My brother loves to play with him and me, I love to snuggle. I know this sounds weird but its like he is protecting me. He sits at my feet if I'm in my chair, comes and plays with me in my play area, and sits in my lap. This is a picture of us snuggling. My mommy just loves this picture. She said they mainly got the puppy for my older brother to play with and I'm stealing all the loving..LOL My seizures are still the same. I'm having way to many. Even though I'm having so many, I'm very alert. In fact I'm more alert than I usually am when I'm having this many. Seizures, I will never understand them. We still don't know what is making them so increased right now. I have to do blood work Monday, so maybe that will reveal something. I did get to have some fun last night. I went to my cousins wedding. Mommy did the hokie pokie with me, and I just laughed. This is so exciting because I used to not be able to handle loud noise at all. Well the music was definitely loud and there were lots of people there. I was very content and we got to stay until almost 9:00. Well I will let everyone know how my blood work goes Monday. Thanks for praying for me. I love you all!!! Jadon

Seizures, seizures, and more seizures

I don't have much to report. My seizures haven't gotten any better. I'm having them during the night again. I'm also having many intense ones all during the day. We don't know an exact amount, but we do know its well over 100. It's just impossible to count them every day. My mommy is off of work for the weekend so she is going to get a good count on them. All I can say is please continue to pray for me. My mommy called our neurologist and they said there isn't anything that needs to be done right now. We just have to wait. Well waiting is horrible, especially when your having seizures all day and all night. Thank you all very much for praying for me. It's the only thing that keeps us going.

Well check but not so well with seizures

So today has not been a great day for me. I had about 150 spasms. We really don't know why. Mommy called my neurologist and she said to give it a couple of days. We did increase my diet yesterday and we increased my banzel. It shouldn't be the banzel because it decreased my seizures to 40-60. The neurologist said it shouldn't be the diet but I'm not so sure yet. We will just have to wait and see what the next couple of days bring. I pray that it's not the diet. I've read that about 10% of patients seizures increase on the diet and again I pray I'm not in that 10%. Now you see why I don't want to try vigabatrin. Yes vision loss is only in 15% of patients but I'm always in that rare category. I had my well check today at my pediatrician's office. She said my nose looks much better. So the antibiotic is working. I am now 21 pounds and 31 1/2 inches long. Yes I'm very long for my age. We decided not to do any vaccinations. My mommy doesn't want them done and my pediatrician agreed with her. So no shots for me at this time. I really need your prayers right now. This increase in seizures is very discouraging for me and my family.