Friday, May 16, 2014


In the last year or so, Jacob has become pretty savvy using his talker. He listens to his choices with his headphones on. When he is ready to make a selection, he hits his switch connected to his talker with his right foot, and a voice will let us know Jacob's wants and needs. There are definitely days he is more into talking than other days, but pretty consistently Jacob will let us know what he thinks, feels, and wants.

If we truly want him to say or do something, Jacob hardly wants to cooperate. This talker business is on his terms. We worked for weeks on having Jacob prepare his answers to be the Star of the Week in school. He refused to answer the questions. In the end, he said "I am not up for this right now. Please, be quiet". I had to tell him that he wouldn't be picked for the Star of the Week, but I would not torture him with questions any longer!

If there is something he really wants, and we don't act on it right away, he will repeat it until we do it. If he is not up for something, he will either simply tell you that or say good-bye. He loves to tell us to be quiet. When his speech therapist didn't want to take him outside the other week, he told her she was mean and it was time for good-bye. He doesn't like that I work, and often tells me to stop working. When I told him that I had to go to see my boss for lunch, the answer back was: "quit".

Jacob knows his favorite people in life, and he will often ask for his family, his friends, his nurses, and baby Derek. He tells us he loves us, he wants to cuddle, and with daddy he always wants to hang out. He loves that he can ask sis if she has farted. He gets a reaction out of her every single time.

Jacob is also getting better about telling us if he is hurting somewhere or if he is tired and needs to get out of his chair. We wish we always knew what was going on with Jacob when he doesn't feel great, but at least we typically know when we're dealing with tummy problems.

Jacob also has an alphabet page where he can pick words or make his own words. It is one of Jacob's favorite pages. He picks random words, we tell him what the words mean, and he moves on to new words.

Lately, Jacob has started to make word choices we are a little surprised about. One Saturday afternoon, Jacob is out in the backyard in his wheel chair, and the word "jackass" blurts out of his talker. Jackass! How often would I use that word? Where would Jacob even have picked up that word? It is not a choice on his talker. He built it from the word "jack" and spelled out "ass" correctly. Jackass!

This last weekend, we got to hear Jacob use the word "play boy". Sarah looks over and asks us what is the meaning of that word. Before we know it, she is searching the Internet for what that means...Jacob was quick to clear it from his screen, so there was no time to capture it!

Dr. C. laughed so hard when I told her what Jacob has been up to lately. She said: "I knew Jacob had a badass attitude. All the times when we thought Jacob had seen his last day, and he was just fighting another medical battle". I have been thinking the same. This kid of ours has an inner strength that is unbelievable and it must come with a certain attitude.

Jacob is once again throwing us all for a loop. We know something is wrong, but we don't know what is going on. In the last two weeks, Jacob has had more seizures and he can be lethargic throughout the day. Being lethargic is not something anyone takes lightly. Jacob and I spent most of Wednesday at Children's doing a multitude of labs and testing to find out what was going on, but we left with no answers. Some days are better, sometimes Jacob is sleepy in the morning, sometimes in the afternoon. We are all puzzled, wondering if it is medication induced or if there is something else that has changed. It is always that fear that his underlying disease has worsen.

Every night, I tell Jacob to keep up the good fight before I kiss him on his nose and forehead. I hope once again that his badass attitude will help him to fight whatever is going on in his little body.

Love, Maria.


  1. Max may have formed the "jackass" in there for Jacob's copy...he's said it a few times. ;) Keep up the good fight Jacob!

    1. Deana, we have tried to recreate it, but it is not a choice. The things our kids come up with!

  2. Love it! He is not waisting time telling everyone how he feels and what he wants. Way to go smart boy!

    1. Thanks, Nadia! To the point for sure :-