Weekend Update

I haven't updated everyone in a few days because there really isn't anything to say. Marek is still having seizures. He has had some of the longest ones thus far over the last three days, one was 30 minutes long. Ryan and I have officially given up on this drug. I can't even explain how empty we feel now that the one thing we have held on hope to help our son is what we despise. Ryan even said this morning as we were forcing the medicine down his throat (because he hates it so much) that it is not worth the fight anymore. I already have a call in to the neurologist requesting him to call us so we can ask him to start ACTH. We are hoping he will listen to us after we explain that not only do we not see a decrease in seizure activity we are actually seeing them get longer. We are unsure how things will go tomorrow but I will make sure that I keep everyone updated.

Since we really don't have any "good" (in the seizure world) news I will share our weekend with everyone instead because we did have a "good" weekend with our son with lots of visitors and love.

Thursday night we had a surprise visitor, my aunt Lynn (my mom's sister). She drove 4 hours from Crown Point, Indiana to see peanut. Since we were already sleeping when she got here Ryan let her in and she slept on the couch until Marek woke us up around 12:00 am. She then snuck into our room to surprise us. On Friday she took my mom out for an Italian dinner (my mom needed a few hours away and I know she appreciated being able to have some sister talk over a glass of wine). Later that night my mom and my aunt MADE Ryan and I get out of the house for a few hours. Neither one of us wanted to go but they insisted. It was nice to have a few hours to breathe but both our minds were back home. Saturday Aunt Lynn left but not without giving us some delicious soups...THANK YOU!


Saturday Marek had many visitors. First was two of my closest friends from work, Terrie and Cara. Marek really liked Terrie and giggled at her almost the whole time. Not only did they come to show their support they brought Marek a gift from the CHS Spanish Club. They had made him an elephant from Build a Bear, dressed him up in a Superman costume and named him Valiente (Brave). It brought me to tears. Thank you to each member of the CHS Spanish Club, it was so sweet of all of you!!! Cara also brought us a very generous envelope filled with gift cards and money from many of my co-workers at CHS. I promise I will thank each and every one of you when I return to work (which I will do because I know we are going to beat this) but until I do I just want to say THANK YOU from the bottom of our hearts.

Nicole also came over Saturday to snuggle with Marek and to spend time with us. We told her that Marek was sleeping in the Pack n Play in our room which he seems to be very uncomfortable in so she was kind enough to lend us Abby's Pack n Play mattress. THANK YOU!!

Saturday night was a girl's night with Marek. My mom, sister-in-law Jordan and I played with Marek and enjoyed catching up on some shows and a little girl talk. It was a WILD night.....we were in bed by 9pm. THANK YOU Jordan for keeping us company and playing with Marek. (He sat in his little chair for an hour and a half while she was here).

Sunday again brought lots of company. Ryan's mom and dad came over with clam chowder which was amazing. They also cleaned our house. I APPRECIATED that so much! They were able to play with Marek and get in some cuddle time. Aunt Darlene and Uncle Gary also stopped by with enchiladas and balloons. Marek has been soaking up all the attention. He knows when someone is watching him and is such a little ham. THANK YOU ALL!!

Our last visitor was my dad. He flew in from Chicago to spend the next two days with us.

Although we feel defeated in our fight against IS at this point we had an amazing weekend with our little man. It was full of laughs and smiles. All our tummies are pretty full too with all the generous meals everyone made for us.

This coming week brings new hope for Marek and new fears for us as parents. We have heard so many success stories in regard to children with IS receiving ACTH, but in the same breath we have heard the opposite terrifying unsuccessful stories as well. It is scary because this really is the last drug that is known to be consistently successful (even though the success rate is around 60%) with treating IS. If we have to go beyond ACTH, which I don't even want to think about, we would be traveling down a road that very few have had success with. I will be praying even harder this coming week, if that is possible, and we ask for everyone's continued prayers as well.

We NEED this drug to be his miracle.