Bye bye we are off to the beach!!!

We are off to the beach for some much needed relaxing with family. We are leaving when my daddy gets off work today. We will be in Biloxi until Thursday. We don't want to go too far and mommy found a room for real cheap at the palace. My big brother Jacob is so excited. He has never been to the beach before either. It's going to be so much fun. I will try to post some pictures one day while we are there. Please pray that I will do ok with my seizures while gone. This is the first trip we have taken since I got sick. I left a video of me waving bye bye. I just started doing this yesterday. I'm getting so smart :)

Neurologist Report and Look What I can Do!!!

I first want to tell you my good news. Yesterday I started sitting up. I would sit while playing with a toy for about 1 minute. Today when my therapist came, I sat up for 4 whole minutes all by myself while playing with toys. My therapist was amazed at what I'm doing. I'm also putting some weight on my arms. Only about 3 seconds with my right hand but longer with my left. My new therapy mat is definitely working. I left you a picture of me sitting up like a big boy. You can see how proud I am. Now on to my neurologist report. My neurologist called this morning. She was out on vacation last week so she just saw all my results this morning. She said that since the EEG showed that all of my seizures are coming from one area she feels like I am having focal seizures. This means all my myoclonus seizures are coming from one spot. This makes her believe that there is something abnormal with the left side of my brain its just to small to see on MRI. So she is not going to start me on banzel. She wants to start me on trileptal. Trileptal is a seizure medication used to treat focal seizures. We will not start it for a week. She wants to decrease my clobazam and give it a week to make sure my seizures don't increase. Once I'm on a full dose of trileptal we will begin to wean me off of keppra. So I have lots of medicine changes coming up. Please pray that I will have a good transition of medication. Also pray that these changes will control my seizures. I will update you and let you know how I'm doing. Love ya, Jadon

11 months old

I'm 11 months old today. I can't believe that I am already 11 months old. Only 1 more month until my farm birthday party. I can't wait:) Time is surely going by very fast. I've been fighting seizures for 5 months now. We have come a long way but we hoped they would have stopped by now. Maybe one day soon. We must be patient and know that God is in control. The older I get the more obvious it is that I'm developmentally delayed. I'm still having trouble sitting for more than 10 seconds, I can't put weight on my feet, and I can only say the g,m,and vowel sounds. Even though it gets harder as I get older my mommy and daddy are very thankful for how far I have come. I'm very alert,determined, and happy. I can grab objects and blow bubbles with my mouth. I'm doing so good considering all that I am going through. All it takes is one smile from me and I can just make any ones day better. Thank you God for everything you have done for me. I'm leaving a picture of me on my new therapy toy. I was suppose to get it for my birthday but mommy didn't want to wait. She found it online and knew it would be perfect to help build my arm strength. I have already figured out how to go in a complete circle. The mat also has different textures. It crinkles and honks when you press Pooh's nose. I love it!! If anyone is looking for one wal mart has them for only $30. If anyone has any other interesting therapy toys let me know. I hate therapy so my mommy and my therapist try to be creative so I can enjoy it :)

Happy 11 month old day my sweet little boy. Mommy and daddy love you so very much!!!!

We are going to Boston.

I've been doing great since I got home. In fact I slept all night long last night. Mommy let me sleep next to her and I slept so good. I went to sleep at 9:00 and didn't wake up until 7:00 this morning. This is the first time I've done this in a long time. Usually the seizures wake me up and I can't sleep. Mommy said I can sleep by her every night if I sleep all night. Mommy and Daddy have been looking at many epilepsy specialist. We finally made our decision and mommy made an appointment for me to go to Boston Childrens Hospital. Boston is the #1 pediatric neurology hospital in the world. We will be seeing the head neurologist who also specializies in epilepsy. So I will be going with my mommy and daddy to Boston on September 29. We are hoping we can get some answers. We have to send all of my testing that has been done in New Orleans. I want to say that we love Children's in New Orleans. They have gone out of their way to help us. We just want another opinion. We want the best outcome and I think any good mommy and daddy would want to do everything possible to help their child. So thats what is going on with me. I will keep you all updated. Please continue to pray for me as I fight to overcome epilepsy. I also added the share buttons to each post. You are more than welcome to share my story. The more prayers the better :)

I'm going home:)

I am on my way home from Children's. Today was a very stressful day but I'm happy now that I'm out of that hospital room. They unhooked me from the VEEG around 9:30. I hated having that cap and leads on my head. When they first hooked me up they said I would probably forget about it. Well I surely didn't forget about it. I scratched and pulled at it until they took it off. I was happy when they finally took it off but I screamed the entire time she took them off. I still have glue in my hair. My mommy washed it for me this afternoon and its almost all gone. They were suppose to come get me for my MRI between 10-11. Well it was 12:00 before we went down to MRI and 12:30 before they took me back. Yes I was starving but mommy and daddy played with me and entertained me. My mommy and daddy were not real happy with this because I could have eaten at 6:30 instead of 4:00am big difference. I did much better coming off the anesthetic this time. I didn't cry and started eating and drinking right away. So now for the results. My MRI is perfectly normal. They can not find anything abnormal. My EEG is showing that all my seizures are coming from the back left of my brain. So we do know there is some type of abnorality with the left side of my brain. It's just not showing up on MRI. As my brain develops we may be able to see it in the future or we may never see it. For some reason my neurons are not communicating correctly on that side of my brain causing some background slowing. The good news is I'm only having one type of seizure and that is myoclonics. These seizures are not causing any damage to the other parts of my brain. In fact the right side of my brain is perfect in every way. I'm also not having as many seizures as we thought. Probably around 40-60 a day. The EEG proved that some of my head dropping is not seizures its just me losing control for a moment. This is all great news. So what do we do next? I have to stay on the clobazam until next week. We are then looking at starting banzel. So we basically have to try another medication. In the meantime we are looking at seeing an epilespy specialist to see if they can find something. We are very grateful for the results we got today, but we are still left with what is causing these seizures and how do we fix it. Oh how we long for the day we can say I'm seizure free. I left you a picture of me smiling and being good for my mommy and daddy :)

Hospital Update

Daddy gave mommy a computer so now I can keep you updated. No need to have to mess with trying to update from the phone:) So we got here at 8:30 this morning. It was so nice to not have to drive over 2 hours to get here. Thank you Aunt Rachael and Uncle Michael for letting us stay at your house. They took us right back and started hooking me up. I did really good until about half way through. Then I had just had enough and I started screaming. It took them much longer to hook me up than the previous EEG. Since this is a 24 hour Video EEG they had to glue the leads down and then use a blowdryer to dry them. Well I will just tell you this made me mad. Once I was all ready we walked to our room. I loved walking in the halls and I was talking and smiling at everyone that passed. Once we got to the room I took a nap. Ever since then there have been lots of people in and out. I do like all the attention:) The nurses just love me and I laugh and talk to them. I definitely am showing them what I can do with my seizures. I have had plenty and I mean plenty.And yes everything is on video including everything we say. Kinda crazy to know your being videod 24/7 but we have gotten used to it. The neurologist will be here in the morning to give us some results. My MRI is scheduled for 11:00 in the morning. I don't know if we will get those results before we go home are not. We will find out tomorrow. Either way we should get to come home sometime late tomorrow afternoon as long as I do ok with the anesthetic. Thanks for praying for me and I will update you sometime tomorrow morning.

Fridays post

This is Fridays post. I sent it to blogger via text message and it sent it in 6 different messages. Don't really know why, I can't figure it out. So I figured out how to email to blogger. It sent it as 1 message but did leave spaces. You can see what I'm talking about by reading my other post below titled trying to figure it out. Who knows at least I can update you while in the hospital now. If anyone knows the trick to fixing these two problems or if they know what I'm doing wrong please let me know. Fridays update is below:

So we do not have Internet at our house anymore. Luckily my mommy figured out how to update you from her iphone. I will be able to keep you updated from her phone now. I went to the dr. today. I still haven't gotten over this congestion. Hopefully I will feel better by Monday. (By the way I don't sound any better today) We have to be at childrens for 830 am. We are staying at Aunt Rachael's house Sunday night so we don't have to leave at 545 Monday morning. I will update you on how I'm doing once we get settled in. I am still having lots of seizures. We are hoping to catch everything on EEG. I did get all my neurotransmitter results back. Everything is absolutely normal. That is great news. Please pray that this hospital visit will lead us to some answers so that we can control these seizures. Also pray that I will be comfortable. I hate when they hook me up to the EEG for only 30 minutes. Imagine 24 hours:( Mommy and daddy are going to bring lots of toys and buy me a few new ones to help entertain me:) Yes I am spoiled..LOL Also pray that I will do great for my MRI test on Tuesday. I will have to be put to sleep and this always makes my mommy nervous. Talk to ya soon and thanks for praying!!!