Jadon's Infantile Spasms Story
Monday, December 26, 2011
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
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.
Saturday, December 10, 2011
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.
Monday, November 21, 2011
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
Sunday, October 30, 2011
Sunday, October 23, 2011
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
> 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
> 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
> 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
Saturday, October 15, 2011
Tuesday, October 11, 2011
Saturday, October 8, 2011
Monday, September 26, 2011
Friday, September 23, 2011
Wednesday, September 21, 2011
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
Saturday, September 10, 2011
Sunday, September 4, 2011
Saturday, August 27, 2011
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
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
Wednesday, August 3, 2011
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”
Sent from my iPhoner
Friday, July 29, 2011
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
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
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
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
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
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
Friday, June 24, 2011
Wednesday, June 22, 2011
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
Friday, June 3, 2011
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!!!
Tuesday, May 31, 2011
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
Tuesday, May 24, 2011
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.
Sent from my iPhoner
Sunday, May 22, 2011
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
Saturday, May 14, 2011
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
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
Thursday, April 28, 2011
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
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
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
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
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
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
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.
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
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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