Today's menu: TOES

After a very sleepless night (I swear Marek was up every hour) he "woke up" in a very chipper mood. He discovered for the first time his toes! I know that this is very common in babies and no one really gets excited about their child discovering their toes but Marek has never shown any awareness of his feet and to watch him look at his feet, grab at them, and even taste them made me smile. He was quite the happy boy all morning long, telling stories, watching Mickey Mouse and giggling.

Our morning fun was interrupted by a cluster of spasms that knocked Marek out the rest of the early afternoon. It just sucks, it is unfair and I get so mad that this is happening. I wake up each morning thinking, "today is the day that he won't have a cluster of spasms." And that will stay with me all day....until I lose my son to another seizure. Hope can give you such happiness but it can also take you to a low beyond all lows when you feel it disappear.

I let Marek take a long afternoon nap and then filled him up with some oatmeal and apples. I think feeding him is one of my favorite things to do all day because he LOVES to eat and is so happy when someone is filling his "little" tummy up. We headed to Marek's first occupational therapy session at 2 pm.

Let's just say that Marek wasn't too keen on "working out" and he let his therapist and the entire facility know it. His high pitch scream that he has recently discovered was working on overtime. Even though he wasn't happy about doing exercises he put forth some effort and showed his therapist what he was able to do. I knew that Marek was behind on his gross motor skills but I always thought that he did pretty well with his fine motor skills. Well I guess it's a good thing I am not a therapist because I was way off the mark. Maybe it was because I wanted Marek to be "normal" in at least one area. The therapist told us that he is performing at a 2 month old level of development. He has great social and communicative skills but is struggling with his fine motor skills. We were given some muscles exercises to work on with Marek and a few stretching activities to do with him over the next week.

Our therapist gave us a great app to download for Marek to use while doing tummy time. We dowloaded it as soon as we got home and Marek did 15 whole minutes WITHOUT crying on his tummy while playing with the app.

His Gigi and Grandpa came over to visit and eat dinner with us. He had a small cluster of spasms before we ate but after that he enjoyed bath time, snuggles and even played some songs for them on his new app.

We got an unexpected call from Marek's neurologist tonight. He called to tell us that all his blood work and urinalysis have come back normal including the good news that his bicarb level is back to normal (24). He then asked us how his spasms were doing. We told him that he is still having as many clusters per day as he did when he left the hospital. We did tell him though that Marek is now reaching for toys directly in front of him which he has never done before. The doctor informed us that he wants to give Vigabatrin a full two weeks before we decide to change medications. I am to call him Monday and if we don't see a clear sign that the clusters are decreasing he will admit us to the hospital where we will start ACTH.

I have to take a minute to thank everyone once again for the continuous texts, emails and calls checking in on Marek. You have no idea how much they mean to us. Please keep the prayers coming!!!

Marek, Ryan and I are so blessed that we have two amazing families that would do anything to help us. Our parents, siblings, and sister-in-law have helped us so much these last two weeks. I especially have to thank my mom who has taken a leave of absence from work to help me day and night with Marek. I feel so bad that Ryan has to go to work each day when I know his heart and mind are at home so we try to let him get some sleep so he can function at work each day. I don't know what I would do without you Mom...THANK YOU!!!