WOW!!! A much needed update!!!

Ok so I can't believe it's been two months since I updated my blog. I'm so sorry for not updating sooner. Our computer was broken so we had to get it fixed and its very hard to update from a phone. So let me catch you up. A lot has been going on in the last 2 months. First of all I did get my early steps evaluation back shortly after my last post. It showed that I'm progressing very quickly. In fact I'm progressing more than average. Mom says I'm making up for lost time. I've also been going to therapy at school with mommy. My therapist are great and I love going to school with mom. I continue to make progress developmental. I'm walking everywhere now. I do not scoot anymore. I can walk with and without my brace. I do walk much better with my brace but I can do it both ways. I can push up to stand. I can kick a ball while standing. I can bend down and pick something up off the ground. I can also carry something around while walking. I can't quit keep up with my brother yet but I do a pretty good job of keeping up with him. Just this week we went to trunk or treat at my moms school. Well I walked and followed my brother the entire time. It took us 30 minutes to walk through all the tables and cars and well I did it. I walked the entire time. My mom was overfilled with joy. My dad and her love to watch me be able to participate and have fun doing things now. It's so amazing to watch me do the things we didn't know if I would ever be able to do. Speaking of amazing my speech is just awesome. I improve everyday. The other day I told someone thank you for bear. It's so unbelievable to watch me. People who haven't seen me in awhile are just in awe of what I'm doing. Life without seizures is awesome. I don't want to say this too soon but I'm going to. The last time I was in the hospital was right after my surgery. I have gone 9 months without being hospitalized. I've never been able to do that. I can't explain how different our lives are now. We have truly been given a new life. Yes we still have our struggles but things are a lot better. So this is a few things coming up. I have my EEG in December. If everything looks ok which we expect it will I will be weaned off my last seizure medicine. Can you believe that? I never thought we would see that day. We are also getting ready for my grant a wish trip. We will leave to go to Disney World February 10. We are super excited about this trip. We can't wait to get away and enjoy some family time together. The main thing I can tell you through all of this is that God has been right beside us and blessed us more than we could have ever imagined. We are getting close to my 1 year seizure anniversary. We plan on having a big party. I will let you all know details at a later date. The party will be January 10 which was my 2nd surgery date. It was also the last day that my mommy and daddy saw me have a seizure. At the party we will have a prayer of thanksgiving. We will then have cake and punch. Specific details will come later. Ok so I promise I will do a better job of keeping you updated. Please continue to pray for me and I love each and ever one of you. Here is a pic of my brother in our Halloween costumes.

I'm 3!!!

Things have been going really great. I'm still walking more and more. I continue to progress with my speech daily. I'm also using my right hand more and more. I had my early steps age out evaluation and I did extremely well. I do not have the results yet but I will let you know when I get them. We had my IEP with the school system Friday. I will be going to Loranger Elementary with my mom on Monday,Wednesday, and Fridays from 8:00-9:30. I will get speech twice a week, OT twice a week, special instruction 3 times a week, and PT and APE once a week. We are extremely happy with the services I got. I will also have wonderful therapist that are going to be working with me. We will miss my early step therapist though. They have been with me for a very long time. Guess what? Yesterday was my birthday. I turned 3 years old. It was a great birthday. My Uncle Mark and Daddy brought me down the big slide and I loved it. I was also able to blow out my candles. This was a big deal because I've never been able to blow out my candles. I had lots of fun with my family and cousins. It was so nice to be able to enjoy my birthday with no seizures. I'm leaving a few pics so you can see how happy I was yesterday. Everyone stay safe. We are preparing for Isaac but hoping for the best. Love ya, Jadon

Neuro results and I got my new brace :)

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

Getting ready

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

Today's results

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

Results

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 :)

We made it :)

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