Last Week of Steroids

Marek has been doing so much better these last few weeks (I'm going to go knock on wood real quick because it makes me nervous to write that). He was fitted for his stander last Wednesday and loves it! Our goal is for him to be standing twice a day for 30 minutes. We have made it to 19 minutes once but he usually tires out around 15 minutes, but it is a great start! It hasn't even been a full week that he has been using it and we have already seen him being able to bear weight for short intervals of time.

Marek has officially mastered rolling over 100%. He learned how to roll over his "bad" shoulder on Friday and now he is constantly on the move. We have been focusing on sitting and getting him to protect himself when he falls. His sitting is slowly coming back however, he is having a hard time putting his hands down to protect himself when he loses his balance, but he will get there. His PT gave us lots of exercises to help him practice gaining this skill, which should be a reflex for him. She even gave Daddy a special exercise to do with him.

This is Marek's LAST WEEK OF STEROIDS!!! We are so excited that the end is so near, but also nervous. His last dose will be Sunday and we are hoping that A. he doesn't start to have more spasms and B. that his body can start making cortisone on its own. We learned that when kids are on steroids that their bodies stop producing this since it is found in the steroid and sometimes their bodies don't start reproducing it when they come off the medicine. So we will be watching him very carefully this next week.

Many people have asked if we are still planning on going to Detroit now that Marek seems to be doing better. The answer is still YES!!! The spiking on his EEG is still causing him a challenge when it comes to development on top of the fact that he is not seizure free. A doctor out of UCLA put it this way when describing what is happening with the spiking. He said it is similar to when one walks into the kitchen and just stands there wondering, "why did I come in here?" But this happens all day long with Marek, his brain is constantly "rebooting" and trying to remember things. We still feel we need Dr. Chugani to evaluate him and tell us what our next move should be. We have been patiently waiting for confirmation on our appointment. We were told we most likely will not hear anything this week but they are hopeful that we will know something by the end of next week.

This past weekend we enjoyed taking Marek downtown Belleville for their BBQ festival. He loves being outside. He even got some new shades since his baby ones don't fit his steroid cheeks.

Ryan and I want to thank Sean again for all he did for Marek on Sunday during the Poker Run. You are AMAING!

Thank you to everyone who continues to pray for our little man, he is going to keep fighting until he beats this once and for all!