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, January 28, 2014
We made it to Detroit and back. I did wonderful during the flights there and back. The flight back was delayed and we had to sit on the plane for over an hour before we departed. I sat down and was a very good boy the entire time. This trip was much more laid back than in the past. It was a very cold trip but I did get to see lots of snow. I loved playing in it and kept asking if Jacob could come play. I do not like being away from my brother. I also kept asking my mom if Santa lived here. I thought that Santa must live there since there was so much snow. LOL The first day we were there we settled in the McDonald house. We were able to bring a King Cake to the ladies at the house. Everyone kept trying to take it from us on the way there. We didn't have any appointments the next day so we spent some time at the Michigan Science Center. We had lots of fun at the center. I even got to hold a snake and a butterfly. Monday was the first day of appointments. We went to see Dr. Sood. He was the neurosurgeon who removed half of my brain. He is such an amazing doctor. He was happy to see how well I was doing. He said that since my language skills are basically caught up then that means my brain in working correctly. He said that he believes I will continue to progress and do well in life. On Tuesday I had a very important test. I had my first EEG done since I've been off medicine. My mommy watched it as I sat there and played and watched tv. She knew it look good but she didn't know how great it was. Dr. Chugani (neurologist) said that my right brain looked perfect and that my left looked like it should for someone who has had a hemispherectomy. That means I can stay off all seizure medication. It also means that my future looks great. He expects me to continue to progress and do well. This is huge for us. At some point we were just trying to stop the seizures so I could live and now they are expecting me to progress and do well. It's definitely a miracle!!! My neurologist did put me on Focalin to help with my attention. So far it has been good. I'm paying attention much better and my coloring is better. I also haven't had any side effects from the medicine. We are hoping it is going to help me. Oh and by the way its a pill that I have to swallow. Well I put it in my mouth and swallow it with my drink. Yes I'm only 4 and can take medicine like an adult. I'm awesome!! Our good news continued on Wednesday. We saw the pediatric hand surgeon. The hand surgeon said that I had more movement in my hand that any hemi kid he has seen. He said that by the time he sees them, their hand is curled down. The reason I have movement is because my hemi was done at such a young age. The best way to explain this is that you have two motor tracks the right controls the left side of the body and the left controls the right side of the body. When you are born the tracks haven't finished developing. In my case my seizures started so early that we believe my track started to transfer to my right side already. When my hemi was done they removed my motor cortex that controls the right side of my body. At that point the right brain had to control the movement on my left as well as my right. The younger this is done the more movement you have. So that's why I have more movement. A lot has to do with the time surgery is done. The main thing the hand surgeon said was that he could do a muscle transfer to give me a stronger grip. We can not do this until I get a little older. The reason is because I have to reteach the muscle to work in a different place. This would require lots of therapy and me understanding exactly what they want me to do and at this point I'm too young. So we will go back to Detroit in 2 years. We will see the hand surgeon again as well as get another EEG. I do not have to have anymore CT or MRIs unless we see a decline in development but that is not expected at all. We were very excited to get the results we got in Detroit. Everything looks very positive for me. They do want me to do constraint therapy in Alabama this summer. It is a 3 week program and it cost $2400. We are not sure if we are going to do this or not. We would hate to do it and it not work. If we knew it would help my right hand we would definitely do it but we just don't know. My mom is already talking to the therapist in Birmingham and we will see. I'll keep you updated. I'm attaching a few pics of our trip. Notice the EEG pic. I smiled the entire time. I never cried. I have such a positive attitude. Yesterday I got to go see my neurologist at Children's New Orleans. She couldn't believe how tall I have gotten. She looked at me and said" Jadon you are just a little miracle aren't you". We definitely believe that statement and coming from a neurologist who sees many neuro things it really meant alot to hear her say this. Thanks for all your prayers!!
Thursday, January 9, 2014
This picture is the scar that I wear everyday. Luckily I have lots of thick blonde hair to cover it up. It is the scar that saved my life. We were hoping that it would be a little thinner than what it is, but we are actually very thankful for this big ugly scar. It is the reason I am able to talk today. The reason I can walk. The reason I can learn. The reason I can develop. The reason I am alive and healthy. It is the scar that was made to remove half of my brain in order to give me life. Today is my 2 year seizure free birthday!! It has been 2 years since this scar was made. 2 years since my parents brought me to that operating room, turned everything over to the surgeons, and sat and waited with faith that I would never have another seizure. 2 years ago this was a very painful,sad, stressful, but hopeful day. A day that didn't seem real. A day that we wish no one had to go through. Today 2 years later, we celebrate with joy. The last seizure we have seen was on my way to the operating room 2 years ago. I couldn't go more than a few minutes with out any seizures before my hemispherectomy. And now today I am 2 years seizure free. Shout to the Lord for He is good. Thank you all for your continued support and prayers. We love each and every one of you and are so grateful to be able to share my story with you. You have all been apart of my healing process with all of your prayers and support. Here is a video that my mom made of my progress this year. I hope you enjoy it.