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.
Thursday, June 30, 2011
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
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
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
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
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
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
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
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
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
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!!!