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.
Monday, April 30, 2012
My appointment went great today. My neurologist said I look great and am doing wonderful. I did show off my speech a little for her. I said Diego when she brought me a Diego sticker and asked me who it was. I said it right away. I also told her bye without any problems. I was not happy to be in a hospital and was so happy to tell her bye. I started crying as soon as I realized where we were. I fussed most of the time there. I was scared they were going to hurt me. Mommy kept telling me they weren't but I still had anxiety. Other than that we had a very great visit and we do not have to go back until August. I'm very excited about this. I use to go ever month or two. Mommy said she will miss seeing my doctor. She has become part of our family and has gone out of her way to help me and my family. So not much info today at the appointment which is a good thing. It means I'm doing GREAT!!!!!
Saturday, April 28, 2012
My days have been great. I'm learning so many new things. I talk all day long. I repeat everything I hear. I'm starting to label things. A few things are grass,sky,bed,ball,outside,all family names,eat,drink,sock,pow pow(for gun),key,bath,egg,chick, and many more. I say tv when I want to watch tv. I say pee pee and poo poo when I go to the bathroom. I answer yes and no questions correctly. You can actually have a conversation with me. It's unbelievable. I have learned the color blue and say blue when you ask me what color is this. We are working on red,yellow, and green now. I say yellow most of the time correctly but don't have it mastered just yet. I can consistently point to my head,ear,belly,toes,eyes,nose and also say those parts while pointing. I can say three animals sounds when asked correctly and also say the animals name. I use to say the same animal sound for every animal but not any more. Of course I can repeat any animal sound my mommy says but I know 3 independently. I can now answer who is this questions and what's that questions. I also say what's that when I want you to tell me what something is. I'm just amazing my mommy and daddy with all my progress. It's totally amazing that I'm not even 4 months post surgery and I've made so much progress. God is really showing us just how powerful He is. He has given me a new life. My motor skills have kinda been on hold the last week or so. I can take steps but I'm scared to do it. You have to remember I'm 3 feet tall trying to learn to walk so I have farther to fall so it's kinda scary. I will get it though and my mommy is not worried at all. She said just whenever I'm ready. I did learn to get off the couch this week which makes my mommy happy because she doesn't have to get me off all day long :) We have decided to cut back on some of my therapies. I will not have therapy on Mondays and Wednesdays anymore. It's too much therapy and I'm getting overwhelmed and not wanting to do therapy. It's ok because my mom does therapy with me all throughout the day and I don't even realize it. One of the best therapies I'm doing right now is swimming with my mom. I can do it all by myself as long as I have my floaties on. I just love swimming too!!! I jump off the step and swim to my mom :) I have a neurologist appointment Monday in NOLA so I'll let you know what she says. I think she is going to be impressed. Keep praying for me to continue to get better. Love you all, Jadon
Sent from my iPhone
Sent from my iPhone
Friday, April 6, 2012
Wow so sorry its been so long since I updated you. Let me start off by saying thank you so much to everyone who came to my run for recovery. It was a great day and I had lots of fun. I loved getting to see each of you. Thank you again for everything you have done for me. I'm leaving a picture of me crossing the finish line. It was the best part of the day!!!! I'm still doing amazing well and still not having any seizures!! I posted the video of me walking for you all to see. I still have a long way to go before I can do it all by myself but its a start and we are very excited about this. Of course my speech is still improving drastically everyday. I can say so many words that my mom has lost count. It's definitely over 65. I'm starting to say phrases such as throw it back when I want you to throw me the ball. I can say sweet tea when I want some to drink. Yesterday I was saying ma ma bad bad. LOL My speech is slurred and it is kinda hard to understand me but random people are beginning to understand me. WOW!!!!The slurred speech is just muscle weakness. The stronger I get the more clear my speech will get. I did have a little set back this weak. I had the beginning stages of pneumonia. Luckily my mommy brought me in soon and we caught it quickly. I'm much better now and am gaining my strenght back. I'm also having some problems with my AFO so I haven't been walking the last couple of days. We have an appointment on Monday to get it fixed. Hopefully we can get it fixed and I can start practicing my walking again. I hope everyone has a great Easter. Remember to celebrate what Jesus did for us that day on the cross. I can't imagine the pain he suffered and he did for you and me. He loves us that much!! I love you all, Jadon