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, April 28, 2010
I went to the strawberry patch today. It was lots of fun. I even got to pet a baby goat. I loved it. It was so pretty outside and you know I love being outside. My mommy said to tell everyone that she is having some problems with the email subscriptions. She said she is working on it and hopefully you will start getting your email updates soon. She said she is sorry. My mom has also been counting all my spasms today. She wants to be able to tell my neurologist how many I have been having. So far I have had 6 clusters and a total of 29 spasms. I have been having about 10 clusters a day and anywhere from 40-60 spasms. My mommy and daddy are very nervous about my appointment tomorrow, but they are anxious to know what we are going to do next. Please say lots of prayers for me today and tomorrow. I really hope there is something they can do to help me. I love you all and will talk to you tomorrow!
Tuesday, April 27, 2010
Today has been a very relaxing day. My daddy was off work and we stayed at the house all day long. Mommy finally figured out how to change my background on here with a little help from my new friends webpage. You can go visit her site. I posted it on the right hand side of my page. Just click her link and you can read her story. She has IS just like me. I ask that you pray for her and her family. Also pray for me as my spasms just won't stop and please pray for my mommy and daddy. They are very worried about me. I am so thankful that God chose them to be my parents and to love and take care of me. I love you all and will talk to ya soon!!! Oh don't forget to subscribe to my webpage by typing in your email and clicking subscribe. Then you must sign into your email and activate your account. I will email you everyday someone between 7 pm and 9pm if I update my post.
Monday, April 26, 2010
Today was a very busy day. We went to the pediatrician's office. They had to do some blood work because I have a rash all over my body. Come to find out it is a viral rash and should go away soon. I also did not get my shots today. My doctors want me to wait a little while. I am back to the weight I was at before the steriods :) After my appointment we went to chick-fil-a for lunch. My brother played on the slide and I watched him. It was lots of fun. After that we went to therapy. I did very good but I got very tired. In fact I really didn't get to do OT because I slept the entire time. Thats ok though because I worked really hard during PT. Ok well I go for my EEG Thursday so I will talk to you then. Thanks for your prayers and pray that I get a good report Thursday. I love ya and will talk to ya Thursday.
Sunday, April 25, 2010
I'm 8 months old today and it has been 2 months since i was diagnosed with IS. It has been a very rough 2 months but I am better than I was 2 months ago. I'm still having spasms but we are hoping to get some good new Thursday. I have to go to my pediatrician tomorrow for a well check. Since I have been sick I never went for my 6 month well check. I don't know if I will be able to get my shots or not. We will see what they say. I also go to OT and PT at North Oaks tomorrow so you see I have a busy day. I'll update you tomorrow and let you know how everything went. Talk to ya soon!!!
Friday, April 23, 2010
I haven't been feeling to great the last two days. I had a cold but I'm feeling much better tonight. Guess what I did another trick. I grabbed my toes for the very first time. I've been looking at them for awhile now and finally was able to grab them. I only used my left hand to grab them, but my right hand wasn't to far behind. Before long I'll grab them with that hand too. I was so excited I started laughing and screaming. I hope everyone has a great weekend and I will keep in touch!!!!!
Monday, April 19, 2010
Its been a busy day for my mommy today. She is working really hard to get me some help. She talked to early steps and I should be getting therapy really soon. Thank you Ms. Julie for helping mommy get me a good therapist. After that we had to go see my pediatrician. My spasms are increased so my neurologist wanted to make sure I didn't have a virus or anything causing them to increase. I'm also not eating very good. My mommy is going to try and get me to eat and drink a little more. After I went to my pediatrician my mom had to call my neurologist back. She said to increase my keppra and that we are going to do another EEG not this Thursday but next. This will show us where we need to go from here. Please pray that I will have a good week. I don't want these spasms to do any more damage to me. I have lost about 2 pounds. If I lose another half pound I will be back to my weight before I started the steroids. I posted a picture of me sitting in my bumbo seat. You can see that I have lost weight. I can sit in my bumbo for a long time now. Everybody is so proud of me. Thanks for praying for me. I love you!!!
Saturday, April 17, 2010
The last couple of days have been a rollercoaster ride. Thursday was an awesome day. I rolled over from my stomach to my back. This is great progress for me. It means that my brain is working alot better and allowing me to do new things. It was a great day and mommy and daddy were so happy and proud of me. Then Friday came with bad news. I woke up having lots of spasms. I ended up having about 75 spasms and mommy had to call my doctor. Well they increased my clonazepam yet again. Its making me a little more tired but I have had a much better day today. I have only had about 25 spasms so the medicine did help. The doctor said that it will take about a week for my keppra to fully be in my system. So hopefully by Thursday I will be doing much better with these spasms. Please pray that these spasms stay down. I really do not want to have to go back to that hospital. Thanks for all your prayers and I will talk to you soon!!!!
Wednesday, April 14, 2010
My doctor told me that I am doing really well. I am having some problems with the right side of my body. It's not developing as fast as my left. I use my left hand to grab things but don't really like to use my right. I can fully extend my left arm but not my right. I also don't move my right leg as well as my left. This all means I have to work really hard in therapy so I can get the right side of my body working better. The reason I'm having this trouble is because of the damage done from having so many seizures. Good news is it is possible for me to build my strenth on that side and I know I can do it. Other than that they put me on another seizure medication called keppra. I am still taking my clonazepam though. This new medicine has to get in my system before they take me off of my old one. They also said that I will probably have to start topemax next month to help control them. She said those two medicines work really good together. Overall she said these are very hard to control but I know we will get them under control. I don't have to go back to childrens for 5 weeks as long as I keep doing ok. I'm hoping this new medicine stops these spasms. Since I have been so good on all these trips to NOLA my mommy and daddy took me to the zoo after my appointment. It was lots of fun. It felt so good outside that I slept most of the time we were there. My brother had lots of fun running around. I posted a pic so you can see how relaxing it was. You know I will keep you updated so keep checking my page. I love you and thanks for continuing to pray for me!!!!
Tuesday, April 13, 2010
I have had lots of evaluations this week. I had my physical and occupational therapy eval yesterday. I am not as behind as what my mommy and daddy thought. I am currently on a 5 month level. That's only 2 months behind and the last 2 months have been very hard on me. The 1st month I was in and out of the hospital and the 2nd month I was on ACTH injections. So we are very pleased at how well I am doing. The only thing that I am not doing that a 5 month old should be doing is rolling over. Even though I can't fully roll over on my own all I need is a little help. I'm sure I will get it very soon. My mommy has made an area in the house for me to play and build my strength. We no longer have a kitchen table but I do love my new play area. It even has a thick mat so that when I have my spasms it doesn't hurt when I hit my face. My therapist said it is very important for me to play on my tummy. I haven't been able to do that because of these spasms. You see everytime I would have one I would hit my face on the ground. Now that I have my mat it doesn't hurt when I have one and I get to play on my belly. I start private OT and PT next week at North Oaks. I also had a meeting with early steps today. I will start speech therapy and either OT or PT with them in about 2 weeks. Just depends on what they can offer me. My mommy and daddy decided to go ahead and start private therapy so I could start getting help immediately. It is very important that I start early intervention as soon as possible. My neurologist was not happy that I hadn't started yet. Well I get to tell her tomorrow that I'm finally getting some help. My appointment is very early in the morning. We have to be a childrens for 8:30. I well let you know what my doctor says as soon as possible. Please pray that I get a good report from her.
Saturday, April 10, 2010
Look at me!!!! I'm able to play in my jumperoo again. I haven't been able to sit in it since I was 3 months old. I am starting to do so many new things. I am putting weight on my feet for several minutes at a time. When I'm in my jump I can turn a complete circle while jumping up and down. I can also ride on my mommies hip for several minutes at a time. My mommy and daddy are so proud of me. I have also found my feet again and boy do I love kicking my legs and watching them. I have updated my slideshow of some pics of things I have been doing. My eyes still look weak because of the amount of clonazepam I am on. My doctor increased it the other day and it has made me drowsy. It has helped with my spasms though. I am only having about 10 a day. Thanks you again for praying for me. When you pray for me today please thank God for what he is doing for me and pray that I will continue to get better. Also say a pray for Brynn's mommy and daddy and everyone else in the family. She went to see Jesus today. Now she is not in pain anymore. We love you Brynn and we know that heaven got a sweet angel today.
Wednesday, April 7, 2010
So the specialist just read my EEG and said the following. My background is normal, my sleep patterns are normal, and there is no sign of hypsarrythmia. The sign of hypsarrythmis is what originally diagnosed me with IS. On a scale of 1-10 I am 1.5 Hooray!!!!I"m so excited. My mommy and daddy are so happy we are witnessing a miracle. The only thing wrong with my EEG is there are still spikes of seizure activity. This means I'm either having other types of seizures, my infantile spasms are slowly coming back, or they are stopping and just haven't completely stopped. Only time will tell. We did get my genetic test back and it was normal. Now all my test are in and all are normal. This is a big sign of relief for my family. Please continue to pray that my seizure activity stops and that I continue to develop.
My EEG was actually a little better than my last one. You could see normal sleep patterns which have never been seen before. This is excellent news. My doctor said we are going to wait a week and see how I do. Even though I'm still having spasms they are not as intense so this is good. If they get worse or more intense we may have to do another round of ACTH. My doctor also said I could be developing another type of seizure. If so then we will treat with a seizure medications. We just have to wait and see. So even though I'm still having spasms its ok as long as I start to develop. Its just a wait and see process. I am grabbing toys now and reaching for things. I only hold them for a second but wow isn't that amazing:) I will update you as much as possible this week to let you know how I'm doing. We do go back to the doctor next Wednesday to see what we will do next. My mommy has my prayer cards now, so if you want some to pass out to your friends and family just email her. firstname.lastname@example.org I love you all and thanks for your prayers just look what they are doing!!!!!
Monday, April 5, 2010
I hope everyone had a good holiday. I sure did. I went to my Paw and Marna's house Saturday and then church with my PaPa and RaRa Sunday. After church we went to my PaPa's house and ate lunch with everyone. I was such a good baby. I laughed and talked to everyone. I am feeling much better now that I am almost done with these steroids. I did go to the pediatricians office today. My blood pressure was great and they did more blood work. When we left the pediatricians my mom took me to her work. We brought everyone out there a thank you note for the gift that they gave us. We also got to see alot of them and thank them. I am so blessed to have so me people that love me and want to help me. Thanks you to all mommies friends for everything you have done for me. Well now we are just waiting for Wednesday. My EEG is at 10:00 so I will let everyone know what my neurologist tells us. We will have a new plan when I leave childrens. Please pray that my EEG is ok. I love you all and will update as soon as I can on Wednesday.
Friday, April 2, 2010
Sorry its been a few days but I've been a very busy little boy. Wednesday I went to my pediatrician's office and my blood pressure was great. I slept the whole time I was there. You see I'm getting use to all these doctor appointments. They also said that all my blood work came back normal. I had to go back yesterday though because they are closed today. When they checked it yesterday it was a little high but nothing to worry about. I don't have to go back again until Monday. I get to enjoy the Easter holidays. I am feeling much better now that I am almost done with the steroids. I am smiling and laughing and getting my personality back. I am still having those crazy spasms and they are still making me cry:( My mommy and daddy are anxiously waiting for Wednesday when we decide what we are going to do next to try and get these under control. I hope everyone has a great Easter and I will update you on Monday.