Inchstones and Awareness

Marek had a a really good day on Wednesday. He only had 4 spasms. Of course we got our hopes up and were really excited that maybe, just maybe this might be the turning point. Unfortunately, Thursday night he had a big seizure of 73 spasms in 45 minutes. So as of now we are just focusing on getting his strength up and working on his development. Marek has had some rough days while weaning off the ACTH. A lot of parents that I have spoken to said that their children were more worked up and irritable while weaning because their little bodies are actually going through withdrawals of the drug. On top of that Marek has had quite an upset stomach and now has thrush in his mouth (one more drug to add to the mix). Wednesday night and Thursday night he hardly slept. We were back out taking middle of the night drives to calm him down. Last night though was a great night for him. Ryan and his mom watched him so I could catch up on sleep again and he slept for 2-3 hours at a time. Hopefully tonight will be another good night for him.

As far as therapy goes, our little man is working his butt off! We are excited that he can finally hold up his head while on his stomach. Granted he is only doing this on his "wedge" which keeps him at a 45 degree angle, but its a start! It's not a milestone but its an inchstone and we are happy to celebrate all the little moments. Marek has a new motto, which is "WILL WORK FOR FOOD!" He is doing so many little things that are making him stronger as long as we reward him with a bottle. He is able to get his shoulders off the ground when he on his back reaching side to side for his bottle. Our therapist showed me how to help him with rolling on an exercise ball. He is doing a great job understanding how to start to roll but he is just not strong enough to get there by himself. He has realized this past week that he has back muscles. All he wants to do is arch his back to see what is going on behind him. Our therapist was very proud of this but now we need to work those tummy muscles! He is doing a lot of sit ups this week so we can balance out those back muscles.

Thank you again for everyone who continues to support Marek on his journey towards a seizure free life. We also want to thank everyone who has come to the house to drop off food for us. We really appreciate it since we don't have much time or energy to cook since our focus is on Mighty Man.

I started this blog as a way to raise awareness of Infantile Spasms/West Syndrome and to help families that are going through difficult times with this disease. I have learned many valuable lessons in the short time going through this ordeal with Marek. One important thing I have realized is that support goes a long way. Support from family and friends, support from other families who are going through the same fight we are, and support from organizations. Today is National Rare Disease Day. There are over 6,000 rare diseases in the world and less than 500 treatments to help cure or control them. Many diseases don't have ANY treatments. Without awareness this will continue to be a problem. Not only is my son struggling with a rare disease but so is my dad (who has sarcoidosis). For both of them I will help to spread awareness with hope that one day drug companies start to take interest in the FEW but very SPECIAL people that struggle from these diseases. I ask that you take the time to watch the video and spread the word to just a few people and ask them to talk about it with a few more people. The ripple effect is a powerful tool. The video was put together by NORD (National Organization of Rare Diseases). They do so much to support families that struggle with rare diseases.

Ryan, Marek, and I have been blessed to receive the help of a student group at Collinsville High School called Kahokstrong. This student organization helps families of students and staff that are struggling. This year they are hosting their second annual Kahokstrong 5K. The theme this year is "Who is your hero?" Participant are asked to dress up as their favorite superhero. My family will be walking  to support our little but mighty superhero Marek as well as to support the club who has done so much for so many families. Please join us to help support a great and worthy student organization. We will be wearing our Team Marek shirts!

KAHOKstrong 5K

Monday Mom and I will be heading to Detroit to see Dr. Chugani. I will update everyone when we get back from our appointment.