My Little Valentine

 I am always so surprised when I log onto Marek’s blog and see when the last time I posted was. There are so many days that I wake up and tell myself, “today I’m going to update the blog,” and yet, by the end of the day, after putting Marek to sleep I basically fall face first into bed and forget that I even had that thought so many hours ago. Ryan and I run almost every day with Marek. We have Speech three days a week, ABM therapy in St. Louis every other weekend, Doctor's appointments, Orthotics' appointments and ABM therapy in Fort Wayne once a month. I guess I shouldn’t be so surprised that I don’t update the blog as much as I would like.

Last month Marek got an EEG because he was doing some odd movements that Ryan and I were concerned about. The results showed some good things and some not so good things. The good news was that all the strange movements Marek was making were NOT seizures. We were very thankful for those results, because that by far was the most important news. I wish that I didn’t have to second guess every little movement that Marek makes but given his diagnosis we have to question everything because we never know what is going on in our little peanut’s head. 

The downside of the results was that his EEG was not normal. This was the first time that the EEG showed both spiking and slowing of his brainwaves on the same EEG. The neurologist didn’t really go into depth on what the slow brainwaves meant at this point. He just said that there is a set speed that brainwaves should travel at given an individual’s age, and Marek’s brainwave speed is below that set speed for his age. We are not doctors by any means, but Ryan and I feel that since Marek isn't developmentally at his chronological age it makes sense that his brainwaves wouldn’t be at that speed either. We are hoping as we come off his last medication and he keeps gaining skills maybe one day his brainwave speed will be age appropriate. The spiking on his EEG means that a seizure can happen at any moment. They said that a spike is like a small spark that would ignite a fire, the fire being a seizure. Marek has been successful at keeping the sparks from igniting but we are unsure if that is due to his own brain’s ability at keeping them at bay or the help of a still pretty hefty dose of Sabril. Only time will tell as we wean of the medication if he can truly be medication and seizure free. 

Marek had his one year evaluation the middle of January for early intervention. Last year when he was first evaluated after his IS diagnosis he was 5 months old and tested at a 1 month level. At his one year evaluation he was 18 months old and tested at a 7 month level. It was a rough day to sit there and listen to all the things that Marek is still not able to do. It’s hard knowing that he is still so far behind but I am thankful for each and every little thing he CAN do. 

New things that Marek can do:

• Give kisses
• Army crawl on all surfaces (at first he could only do it on our hardwood floor)
• Give High Fives
• Pivot in circles while on his stomach
• Take his sock off
• Signs “more” for EVERYTHING

He has accomplished a lot in the last month. Although we always wish he could acquire skills faster, we take the time to celebrate each little inchstone. I think as time goes on family, friends and even ourselves start to think that things are “all better.” Most of the time we live in our new “normal” without thinking twice about Marek’s limitations. I feel that we are able to not think about the negatives so often because we honestly live in a for a lack of a better term a sort of bubble. When its just the three of us and our families we focus on the things Marek CAN do. However, there are times that we have to venture out of our safe circle, for Marek’ sake, and we find out very fast just how hard it is to go out in the real world. Ryan and I always try to think of things that we can do with Marek since we know it is best for him to go out and discover new things and be around other kids. 

Last weekend I had a great (soon to find out terrible) idea, lets take Marek to Monkey Joes. My thinking was that he could play on the inflatable bouncers and we didn't have to worry about him throwing himself backwards and hitting his head on something hard. The second we walked into Monkey Joes I regretted my idea. Seeing all the kids Marek’s age running around, bouncing on the equipment yelling for their parents was like a sucker punch to the gut & heart. There was no way Marek would be able to play on the equipment without being trampled. We were in there for three minutes before turning around and leaving. I couldn’t get out the door fast enough. I barely made it to the car before tears rolled down my cheeks. I could tell Ryan was upset too. It sucks when we realize all the things that Marek is missing out on, and selfishly what we are missing out on too. Its hard to be around any kids; family, friends, strangers etc. because it is a very, in our face, reminder of what Marek struggles with. So back in our bubble we have gone until we have enough strength to face our next outing. 

Marek and I are in Fort Wayne this week. This time we are here by ourselves since Kourtney went back to Marengo to help my mom who just had knee surgery. Marek’s ABM Therapist, Jon, was very pleased to see how much Marek has progressed since our last trip up here. I love getting to spend one on one time with my little peanut. We have a lot of down time between his therapy sessions so we went to the book store where Marek picked out a few books he liked, we have gone out on a bunch of lunch/dinner dates and Marek even went on a train ride. 

As Marek gets older and develops new skills it is fun to do new things with him but as he gets bigger I am finding it more and more of a challenge to go places alone with him. He is at an age where he doesn’t like to be in the car for more than two hours, which makes this 5 1/2 hour trip to Fort Wayne very interesting. As he gets bigger so do his lungs, I'm telling you that boy can SCREAM. Its always a challenge to get in and out of the hotel since Marek can’t stand or walk and is too big for his carrier my only option is to hold him while bringing each bag in from the car. And maybe this is sharing too much, but its a definite struggle when we have to take potty breaks on our long car ride. I can't leave Marek in the car and he can't stand by himself so when Mommy has to use the potty the only place for Marek is on my lap. These are the challenges I never thought I would have to think about but having a non mobile 18 month old makes some days very interesting. However, in the end, it is all worth it as I sit and watch him do new and exciting things through ABM therapy. 

When we get back to St. Louis we will be making the change to a new childcare place for Marek. His last one is just not working out how we had hoped it would. It seems that Marek was too much work for them and they didn’t want to follow our wishes as parents as well as his therapists' recommendations. Marek also HATED going there so our hope is by starting at a new daycare they will be more willing to help Marek and in return he will be happier going there.

Although I am counting down the days until summer I have a new appreciation and love for the snow. Mighty Man was able to enjoy  his first sled ride with Daddy before we left for Fort Wayne on Sunday. He loved it and it made the perfect ending to our weekend. Hope everyone had a great Valentine’s Weekend spending it with those you love.