On a roll!!!!

There is no stopping him.

Marek’s development has been soaring lately! I am a true believer now that the medicine he has been on has been holding him back. Every time we drop the dose he connects more with us, his therapists and life around him. We are currently on 6 Mls of Sabril (we started at 30 Mls). If all goes well Marek will be medicine free in May! We are excited to see how he will be after all the medicine is out of his system (a little scary, but we are staying positive that the path we are down now will be filled with sunshine and lots and lots of MILESTONES!). At the end of February, Marek sat up for the first time all by himself. It was a struggle, but with lots of grunts he was able to push himself up from lying on his back. Since then he has learned how to get out of a sitting position, side sit and push himself into a sitting position from being on his tummy. Just yesterday he learned how to scoot on his butt backwards. He understands a lot of small requests that Ryan and I are asking of him. He has learned another sign which is “please” and we are working on “all done” "eat" and “no”. Now that Marek is finally using his arms we can focus on his legs. We got to Fort Wayne yesterday morning for Marek’s first WEEK LONG therapy sessions. All the other times have been roughly three days. I am excited to see what Jon (his ABM therapist) can push him to do now that he has more body awareness. I am also very thankful that my dad was willing to drive with me to Fort Wayne yesterday only to fly back last night. Marek hasn't been the best travel buddy these days. He makes it about an hour before he melts down unless someone is entertaining him in the backseat. So THANKS DAD!!!

As Marek gets stronger and more mobile we are finally getting to “worry” about or maybe a better word is “enjoy” some regular obstacles. He now sits up in his crib so that means that anything around his crib has become accessible to throwing and pushing down. It took us a few nights or “bangs” and “crashes” to realize that we need to move everything away from the crib and lower the mattress. Marek also has learned how to open cabinets and drawers which means we have had a few pinched fingers in the last couple of weeks. Our biggest “normal” obstacle we are facing is his meltdowns when we tell him no or when he can’t figure out how to do something. The closer we get to his second birthday the more we see, but deep down we love it because it means he is cognitively aware of his surroundings and what we are saying to him. 

Easter was a lot of fun this year. Marek participated in opening his baskets from everyone and his Nana and Papa helped him color Easter eggs. His favorite part had to be the food. MAN THIS KID CAN EAT. We have removed all of the restrictions from his diet and he has discovered the world of “kid snacks” and loves it! Ryan and I are thankful that mealtimes can return to normal now that he can have whatever we are having instead of having to prepare something special for him. 

As the weather warms up Marek is enjoying all the outdoor activities. He loves going for wagon rides, bike rides and blowing bubbles outside. I can’t wait to get him in the pool this summer and see how much he is able to do in the water. Ryan and I try to find one thing each weekend that is “Marek friendly”. It is a struggle some times to find places that we can take him where he can enjoy the activities even though he still can’t walk. We have found that the Magic House in St. Louis is a great place for him. He was able to play with all the ball activities, the lighted sandbox, and enjoy all the musical toys that they have. We also ventured out to the Incredible Pizza Company which has a section for small kiddos and Marek was able to enjoy a few rides. It took him a few tries to warm up to the idea of going on the rides by himself but by the end of the night he was signing “more” every time the rides stopped.