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.

Wednesday, September 21, 2011

I'm standing and Detroit



Sorry I've been slacking on the updates. Just been a little busy. First I want to start by saying I'm standing up. I can only stand there for about 10 seconds but its a start. I also started saying no no no. I've been very talkative this past week. My favorite word right now is ma ma. You know she is my favorite person. LOL I love my daddy and brother too. Well on to my trip. We made it to Detroit yesterday around 3:30. I was wonderful on the flight. I slept most of the time and when I was awake I was smiling at people and trying to get all the attention. The best part of the plane ride was landing. I screamed really loud like I was on a roller coaster. I'm not sure if the people on the plane liked this but oh well I was having fun. Once we got here we took a taxi to the Ronald McDonald House. The house is awesome. We even have our own private bathroom. The people here are very friendly. Tonight the local electric company came and cooked supper for us. It was very delicious. One of the guys that cooked for us had his son with him who had epilepsy too. We talked to them for a while. He actually sees the same doctor as we are going to see Friday. They said he is wonderful. Another great thing about the house is it is only $10 a night. We will not be able to stay here Friday night but that's ok. We are very thankful to get to stay here the other days. The hospital is right next door to the house. I had my AMT PET scan done today. It went alot smoother than I expected. We got to the hospital around 8:00 this morning. We had to wait for the medicine to be made. You have to be at the hospital before it is made. We waited until about 9:30. They took me back and started my IV's. Yes that's right I had to have two IV's. One to put medicine in and the other to draw blood out of during the test. The two have to come out of separate veins, they can not cross. The nurses did a great job putting them in. I was kicking and screaming and giving them a hard time. It's amazing they got them in so quickly. I went into the PET scan around 10:15 and I was done by 11:30. The doctor wanted me to use the new scanner. That scanner is faster and was able to do the test in a little over an hour. We originally were told it would be over two hours. So this was a blessing that we were able to use the new scanner. Once the test was over, they woke me up and we were back at the house by 12:00. We took a long nap once we got there. When I woke up we walked to the market and bought some groceries to keep at the house. So thank you so much for your prayers. Today was much easier than expected. We do not have to go back for any testing tomorrow. We are going to try to go do something in the city. Just so you know, this is not the best city we have been to. It's a little scary. So glad my daddy is here with us. In fact we walked to a place to eat yesterday afternoon and turned around. We did find a better area to go today. I will keep you all posted. We see the neurologist Friday and we should have some results. Thanks again for praying for me and please continue to pray for good results Friday. I love you all very much!!!!

No comments: