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.
Tuesday, July 24, 2012
Today's appointment went really well. Dr. C said that my language and cognitive skills are just great. He said we just have to work on the physical part. Though we have to work on it, he said my physical abilities have come a long way from when we started so he was very pleased with my progress. He was very excited I was walking and he said my physical ability will keep getting better. He also said my right hand was tighter than he wanted it to be. He said I do have good function of the hand but he wants more bc he said I have the ability to do more with my right hand. He wants us to tie my left hand up for an hour a day and force me to use my right hand. He wants us to make this a game and make it as fun as possible. We don't want me screaming the entire time or we will not make progress. He also wants us to do lots of stretching. He said that what happens is the brain starts to neglet the effective side. The brain I have was not made to move the right side so it will begin to neglet that side. We have to make me use that side so this doesn't happen. He said he wants to see us back in a year so he can check my right hand out. He said that if it continues to get tight then I will have to have surgery on that hand. So our goal this next year is to really work on that right hand. He also wants me to have a VEEG in January at Childens in NOLA. We will then forward him the results and if it looks good he will take me off my seizure Meds. So exciting, I didn't think that day would ever come. So overall great visit with lots of good information. Thanks for all your prayers and please remember us as we travel home tomorrow!! Talk to ya soon!! Jadon
Monday, July 23, 2012
It's been all great news today. They had to sedate me for my MRI. The nurse read in my chart that I was a hard stick for an IV so they put me to sleep using a mask and then started an IV. Of course I hated the mask but I fell asleep very quickly. It was much better than having to start an IV first. I then went for my MRI and then to recovery. I did great waking up and immediately started eating crackers and drinking. We then went upstairs to see Dr. Sood. He pulled up my MRI on his computer screen to show us. He said everything looked great and that it is very unlikely that I will ever need a shunt because there is no fluid build up. He also said I'm doing very well. He was amazed at my speech and how alert I was. He said that i have great function of my right hand. Of course I was showing off for him. He held out a pen and I reached out and grabbed it and held onto it immediately with my right hand. I also kept saying I walk and was walking all around the room. He said he would see us in January when we come back for our yearly checkup. Thanks for your prayers and I let you know what Dr. Chugani says tomorrow :)
Sunday, July 22, 2012
We made it to Detroit. It's been a long day. I woke up a 3 this morning with a tummy ache so we have been awake since then. I'm much better now thankfully. My mommy was worried we wouldn't be able to come but we are here and I did great on the flights. We were able to get a room at the Ronald McDonald House. They originally told us they were full but a family left today so we got in. God always works things out. The staff here is awesome. They remembered us and wanted to know all about my progress :) Today as we were walking through the hospital to get back to the house all of a sudden all these memories started coming back to my mom. The late nights of walking back to the house as she left me with my dad so she could rest some. It's just crazy how all those emotions and fear come back just being here again. I have my MRI tomorrow so please be praying for me. If you would like, it would be a good day to wear your purple shirt so you can remember me all day. I'll keep you posted. I have to say it's kinda nice to be at the place that saved your life. I'm very excited to see my doctors and show off my tricks. Thanks for the prayers. Talk to ya soon!! Jadon
Thursday, July 19, 2012
We are getting ready to leave for Detroit this Sunday. I have an MRI Monday and then an appointment with Dr. Sood (neurosurgeon) that afternoon. Please pray that everything goes well. I will have to be put to sleep for my MRI and that worry is always there every time I have to be put to sleep. This will be the first time I have been put to sleep since my surgery. This will also be the first MRI since surgery. I have had two CT scans but not an MRI yet. Please pray that we get good results. We are expecting to get great results since I'm doing so well. So Monday is the day I really need you to be praying for me. I will then see Dr. Chugani Tuesday. We can't wait to show him and Dr. Sood all my tricks. Especially all my new walking I'm doing. Yes I'm up to about 12 steps now. Getting better everyday!! My mom was writing down everything I've been doing lately and its really impressive. I am using about 130 words consistently on my own. These are the words that I say everyday or at least every other day. As far as how many words I can say. I can't give you a number because I try to say every word you ask me to. I will say that I can repeat at least 300 words if not more. I could ONLY say 10 words 6 months ago. That is totally amazing!!! I'm also following 2 step directions, can count to 3 and then finish with 8,9,10. I can say several letters of the alphabet when you sing the song, I can sing rain rain go away, and am walking. Wow what a difference the past 6 months have made. We are so thankful for surgery and for Dr.Sood, Dr. Chugani, and their team at Detroit Children's Hospital. When you pray for me today please thank God for what he has done in my life. I will keep you all updated while we are gone. Thanks so much for praying for me!!! Jadon
Monday, July 9, 2012
So we made it to Baltimore and back. We had such a great time. We met lots of new friends. We got to meet Charli and her mom. It was so awesome being around other kids and families who have gone through what we have. They totally understand you and really know what it is like to go through this surgery. We went to the conference to learn but we came back full of new information and lots of new friends. I stayed in the kids camp while mom listened to the speakers. I played ball the entire time. The teenager who was helping talked about how well I can throw a ball. I just love playing ball. After mom listened to the speakers each day, she took me swimming. This was my favorite part of the trip. I just love getting in the pool. I'm leaving you a picture of my mom and I at the conference. I hope next year we will be able to take my daddy and brother. I am very blessed to have been able to attend this year. It's because of people like you who have helped our family out during this time. By attending this conference my mom was able to learn about all the new research and therapies that they are doing for kids post hemi surgery. She will be able to help me reach my maximum potential with all the new things she learned. We are also hoping to be a part of some of the new research therapies they are doing. I just have to get a little older first. I can't thank all of you enough for helping me have the opportunity to attend this conference. It was an awesome experience!!!
Tuesday, July 3, 2012
Yes we are going to Baltimore this Thursday. My mom and I will be traveling by ourself. My mom decided that I really needed to go to the hemispherectomy conference they are having there this weekend. They are going to give us lots of information and things to do post hemi surgery. It's information that we just can't get around here. We are very excited about this trip. The best part is I will get to meet some of my online friends. One being my friend Charli and her mom. Some of you probably remember who Charli is. She is the little girl who had her hemispherectomy before me. I posted her story on my blog so that you could see what I was fixing to go through. I'm very excited to finally get to meet her and her mom. They have been so helpful to us. I will also get to meet lots of families who have experienced hemi surgery. It should be an awesome conference. I will definitely let you know how it goes. Please pray that we will have safe travels and that we will learn lots of new things so that my mom and dad can help me reach my maximum potential :) In other news, I continue to make huge progress. Of course my speech is getting better and better each day. I can have a small conversation with a stranger and they can understand me. I'm really into learning to sing songs right now. I'm trying to say my ABC's and I can say several letters. Some of my other favorite songs are the ants go marching, the itsy bitsy spider, and of course the wheels on the bus. We are trying to learn songs that have hand movements that require both hands. Just a fun way to practice using my right hand. I did have to go to the brace shop yesterday. Guess what? I'm outgrowing my brace already. I have only had it for 3 months. It is suppose to last 6 months to a year. The lady at the shop fixed it to last until August. In August she said I will have to get a new brace. The bad news is I have been complaining about the brace since we got home yesterday. I keep saying ow ow until my mommy takes it off. This is not good for my walking. We are going today to try and get me a new pair of shoes. Hopefully that will help me get through next month. I'm leaving you a pick of me playing a chuck e cheese. This is a great place for therapy. I wish we could go there once a week :) Thanks for all your prayers and I will let you know how the conference goes!! Love ya, Jadon