Today makes 2 years since I was diagnosed with Infantile Spasms. I can not believe its been that long. I'm so excited that today after my 2 year fight, I can say I'm no longer having seizures. My mommy and daddy say I'm the strongest little boy they know. I don't know how to give up. I fought around 200 seizures a day for almost 2 years before they stopped. Doctors were amazed at how well I was doing. God has been right by my side the entire time. When I wasn't strong enough he carried me. His arms have been around me and comforting me through this all. I would not be able to be so strong if it wasn't for God's loving arms around me and my family. I'm so thankful to have a family that has fought for me and trusted in God's plan. If they would have given up at any moment we would not be where we are today. So today we are crying tears of joy and shouting our praises to the Lord who has taken these seizures away. I'm leaving a timeline of pictures and major events that have happened to me the last 2 years if anyone is interested. This timeline is only a small piece of what we have been through. As I was creating this and looking back through everything we have been through I honestly do not know how we made it through everything. All I can say is God has carried us through the tough times and continues to guide us on my journey!!! My mommy and daddy realize how blessed they are to have me. They say not everyone gets to witness a miracle from God like the one we have witnessed. I have taught them so much about life. They say they are both better people because of me. My smile will make the problems you think you have go away. If I could pass anything on to my readers, I hope that it is love. I hope that you have become a better person and realized what is important in life. I hope that you have grown closer to God by seeing my strength and what He has done in my life. My journey and my struggles are not over but I can't wait to see what God is going to do next. I love each and everyone of you!!
August 25, 2009- I was born. I had to go the NICU for oxygen for a day but I went home a healthy 8lb 12oz baby.
November 25, 2009- My 3 month picture. So strong and meeting all my developmental milestones. In fact I rolled over at only 5 weeks old.
December 2009- I had RSV and was in the hospital with my brother for 5 days. This was on the way home from the hospital. This was the first time I was in the hospital with my brother.
January 2010- We started noticing these movements I was making. Little did we know our world world was fixing to be turned upside down. I was still such a happy baby. It didn't look like anything was wrong at all.
February 24, 2010- I was diagnosed with IS just before I turned 6 months old. Our world was changed forever that day. My mommy told me she would do everything possible to help me get better. She also said that her and daddy would stand by me and help me through every step of my journey. This picture was taking the day after my diagnosis and I'm still smiling even though my development had stopped.
February 28, 2010- I was put on klonopin on my diagnosis day. It made me so tired and weak. I couldn't even hold my head up.
March 2010 - I was put on prednisolone for a few weeks. It was not helping any. They increased my dose but it still did not help. My insurance finally approved my ACTH medication and I started ACTH. I went 2 days with no seizures but they started back. My EEG did clear up. The medicine made me swell so much. Again I still remained happy and smiling.
April 2010- I was put on another round of ACTH because my IS was coming back and my EEG was looking worse. I didn't swell as much this round and this round cleared up my hypsarrhythmia. Once the hypsarrhythmia was gone I started to develop again even though it was very slowly.
May 2010- I was put back in the hospital to try more medication. I did learn to sit this month at 8 months old.
Summer 2010- That summer brought many hospital stays and many medication changes. We did get to go to the beach for about 2 days. It was about 2 hours away because we didn't want to be to far away from our hospital. Mommy and daddy started researching other places in desperation to get some help for me. We decided to go to Boston but we couldn't get an appointment until September.
August 25, 2010- I turned 1 and was doing pretty well developmentally considering what I was going through. I could sit up by myself. I was making some babbling noises. I could say dada. I could play with my toys. I could use my fingers to eat. I was crossing midline. I could stand if someone was holding my hands. I was very attentative and loved to smile at others.
September 2010- My brother and I got sick and were put in the hospital. This was the second time that we were both in the hospital. The hospital was great and let us stay in the same room with mommy.
October 2010- We visited Boston for the first time. They did lots of test and we still didn't have any answers. They gave us more treatment options to try and said to come back in a year. We started Banzel which was the only medicine that helped my seizures for any amount of time.
November 2010- I started the keto diet. That same month my grandmother died. I know she has been watching over me ever since.
December 2010- I was having lots of problems with the keto diet so we went back to Boston to see their specialist. We made some changes and my seizures continued to get worse so we stopped the diet. They told me to come back in June to repeat my MRI because it was showing slowed development. We also went to Houston to see an herbologist to see if she could help. We visited Santa while we were there.
January to May 2011- We made lots of medicine changes to try to stop my seizures. I was in and out of the hospital. I got sick and was put on steroids. My seizures got better but they didn't stop. We decided to do IV steroids to try to stop my seizures but it didn't help at all. Through it all I'm still smiling.
June 2011- We went back to Boston to repeat my MRI. They said that my left side was developing slower than my right and to come back in August to repeat all my test. Especially because we were seeing right sided weakness and the seizures were making the right side of my body move. This was the appointment that we were told that surgery would be my only option but they didn't know if I would qualify.
July 2011- My family collected money and gave me an ipad. It has been the best therapy tool. I have learned so much from it. I will never be able to thank them enough for giving this to me.
August 2011- We went back to Boston again. They repeated all the testing but said I was not a surgical candidate. Our neurologist in Boston referred us to Detroit children's to see a specialist there. My mommy already new the doctors name because you know my mommy researches everything. The neurologist in Boston said that if anyone could help me it would be this doctor. I will always be thankful for this neurologist in Boston who was not afraid to send me somewhere else.
September 2011- We met the doctor that saved me from these seizure. We loved him from the start. He knew that the left side of my brain had 4 spots that were not working. He wanted us to try one more medication before he did surgery on me. My mommy and daddy were shocked. Could this be true. Can this doctor actually give us the answer we had been looking for for so long? We were scared to death of surgery but excited to have some hope to stop these seizures.
October 2011- We started the medicine but it didn't stop my seizures. It did help a little but the seizures slowly came back. We contacted our neurologist in Detroit to set me surgery date. It was a very sad month as we new what we were fixing to have to face.
November 2011- We went back to Detroit to meet my neurosurgeon and to update my MRI. We didn't have to but mommy said no surgeon is cutting into my head before she gets a chance to meet him and ask some questions. Turns out she didn't have to ask any questions, the surgeon answered them all when he explained the procedure. This made my mommy feel much better about my surgery. This same month I had an allergic reaction to lamictal. Seizure medicines are so hard on your body. Not only did I have an allergic reaction to lamictal but we also found out that I'm allergic to ants. See the last picture under this post. Wow what a crazy and busy month.
December 2011- We enjoyed family time. We made the most of every moment and spent alot of time on our knees praying.
January 2012- I had my surgery that relieved me from these seizures. We had to remove more than what we wanted but God had a plan and we followed. This surgery has turned out to be my miracle. Yes it was the scariest thing we have ever had to go through but I'm strong and with the help of God I have beaten the seizure monster.
A big thanks goes to my brother Jacob. This has been very tough on him. Its something a four year old shouldn't have to see but he has been there for me through it all. I love you so much Jacob!!!! This is me today February 24, 2012. Just look how happy I am :) I have come so far in the last 2 years. Thank you all so much for your prayers. Please continue to pray because I still have a long way to go.