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, August 14, 2012
Things have been going really well since mom went back to work. I've been a good boy and I don't cry when she leaves. I do stay right by her when she comes home though. We are in the process of scheduling my IEP meeting so I can go to school when I turn 3. We are not sure when and how long I will go but I'll let know when we find out. I do know that I'm going to go to MMO on Tuesday and Thursday. We stopped by and saw Ms. Pat(my teacher)this morning before we went to my appointment in NOLA. My appointment went great. She said that I look fantastic. We do not have to see her again until December. In December we will do a video EEG and send it to Detroit. As long as it looks ok then we will wean me off my Vimpat :) So we had a great appointment but we are going to miss getting to see my neurologist. She has become very special to us. After my appointment we went to the brace shop. I finally got my new brace and you aren't going to believe this but I'm walking,walking,and walking some more. So after waiting two weeks with no brace, I just picked right back up. In fact I'm doing better than before. I took 58 steps tonight. I'm also walking just because I want to without anyone telling me. My mom walked out of her room this afternoon and I was walking down the hall. This made her so happy :). I'm doing so well and I continue to make huge progress each week. Thank you all so much for praying for me!! Love, Jadon
Friday, August 3, 2012
Yes we are getting ready for my mommy to go back to work Monday. She has been off for 8 months with me. She is not looking forward to going back to work. She wants to stay home and teach me and do therapy with me. She said though she doesn't want to go back she is very thankful that she was able to stay home with me for 8 months. She couldn't have done it without all the generous donations from all of you. So from the bottom of my heart thank you all so much for allowing her to be here with me during my recovery. I can't thank you enough for all you have done for me and my family. I also have a few new things that are fixing to happen. In 3 weeks I will turn 3 years old. We are not excited about this because I will no longer qualify for early steps. My early steps therapist have been coming to my house since I was 7 months old. They have become a part of our family and we will miss them so much. They have helped me progress and helped teach my mommy all about therapy. Again we will miss them very much:( So what am I going to do for therapy? I will start going to therapy at Loranger Elementary for a few days a week. We do not know how long or what days yet. I will keep you all posted when I do know. The good news about this is my mommy knows all the therapist there and they are all wonderful. I know they will do a great job picking up where early steps left off. I will also get to go to MMO at the Catholic Church in Amite. MMO( mother's morning out) is a great program for toddlers. I will go there Tuesday and Thursday mornings from 8-12. This will be great for me to be around other toddlers. Many people are asking who is going to keep me when mommy goes to work. Well my MiMi(my daddy's mom) will keep me on Monday and Tuesday. My Aunt Mendy will keep me Wednesday, Thursday, and Friday. So I will be with family during the week. Please pray for me during all these transitions. I am a momma's baby and I am attached to all my early steps therapist so we are not sure how I'm going to handle all these changes. I'm sure I will do great!! Just a quick update on development. I'm still doing really well. I'm not really walking much because I'm having brace issues again. My brace is just too small. We did go to children's yesterday and they casted me for a new brace. Hopefully we will get it in the next 2 weeks. Until then I'm afraid we are not going to see much walking. I need that brace and I need the support. That's why mommy went and sat a children's without and appointment so they could fit me in yesterday. My speech continues to improve daily. The other day I went to my dad and said daddy nunu car outside get it. So yes I'm getting my point across. I'm also improving play time. I understand how to play with toys and what to do with them. I can play with a toy for a long period of time. I'm doing well with my constraint therapy. I'm using my right hand alot more. This is very encouraging. Please say a prayer for my friend Connor who is having lots of seizures and fixing to start some new therapies to try to help. Also pray for baby Kingston and Jocelyn. They both just had hemi surgeries and need our prayers. They are both doing well but are both still in the hospital. Thanks for all of your prayers! Love ya, Jadon