Saturday, February 26, 2011

Sam Will Always Keep You Guessing!!

After Sam's very ambitious first week of rehab...he may have overdone it a bit. On Friday of last week Sam was working with his teacher and in true Sam form he was giving her a hard time, but then suddenly I heard what sounded like crying. That's a red flag for me because Sam rarely cries. Sam will say "No", okay Sam will scream "NO", Sam may push things away or choose to ignore you by jumping into a stim but he doesn't cry. I asked him if his hip hurt and he responded with his usual "No, all better". But a momma just knows when something doesn't seem right. I asked him if he wanted to get in his bed and he said "Yes". At this point Sam has been standing and climbing into his bed on his own but this day he would not weight bear, he wouldn't even put his feet down which means I have to lift and transfer him. Normally when I offer Sam medicine I hear "No, no medicine". On this day Sam said "Medicine, yes". My heart again hurt because Sam was in pain and considering Sam's very high pain tolerance...he was in a lot of pain.

With a child like Sam you have to learn to read his non-verbal cues. Sam is not going to tell you he has pain or that he is sick. Sam doesn't like medicine, doctor's, hospitals and pretty much anything medical. You have to watch for changes in his personality, expressions, repeated movements such as touching a body part, listen to a change in his voice or his swallow, look for changes in his eyes, his skin, listen to his breathing. Watch, observe and pray. I have always advised parents to go with their gut, my pediatrician relys on me to determine when Sam needs to go to the hospital during a respiratory issue. These are the difficult decisions, because as much as Sam has been sick in his lifetime he could have spent a good deal of his life at doctor's offices, hospitals and ER's and when he was little and we were just beginning this journey he did. But then we got to a point where we began to take on more and more in order to keep him home, in order to not over medicate. With Sam we have learned that everything you put into his body, into any of our bodies for that matter, has side effects but in Sam's case they are more extreme. Sam is on a special diet because of this, Sam does not medicate well because of this and our level of monitoring Sam, even to the point of limited exposure to potential viruses (school, church, shopping...) is a part of this. By far the medical decisions are some of the most difficult that I make but they are just one of the areas that test my gut feel, my faith...because in my world I believe that is how the Lord is guiding me. Sometimes I wish he and I could just set up a conference call or text each other since there are so many decisions to make and some concrete direction would be great.

Over the weekend, I consulted with his therapists, his doctors and I let Sam take the lead. He chose if he wanted to be in the wheelchair, in bed, on the couch, on the recliner and he decided to spend most of the weekend in bed...he even put himself into a traction position on different occasions. So we all decided to scope things back a bit. Sam had a difficult session in the pool on Tuesday, he was combative, uncooperative and even seemed fearful. We concluded that he needed the stronger pain medicine and my mind began to long would it take to get Sam mobile, is he going to be in this amount of pain all the time, how much pain is he actually in?

And then.....Sam took the lead.

When his therapist Anne was working with him on Friday HE decided he wanted to walk to different rooms but you have to understand and appreciate why. Anne had hooked up a bungee kind of thing to her belt loop on her pants and Sam was very interested in trying to hang her from the chandeliers in our house. Soooo....he hung on to her and walked to 3 different rooms to propose where she could hang from. Was he getting her back from last week??? Has he taken on a new interest in aerodynamics??? Does he not like my chandeliers???

Well, then there was yesterday morning. I woke up as Sam was just beginning to wake up so I thought I would jump in the shower. After I get out I always yell to Sam to see how he is doing. On this day there was no answer, so I wrapped my towel around me to check and see if he fell back asleep but when I got to his room, there was no Sam...not in the bed and not in the room. Now when you have become accustomed to seeing your child in the same room every day for the last almost 4 months this really rocks your world. I began to panic a little and yell, "SAM!!" and I hear a very disinterested "What?" coming from another room. I run to the front hall, no Sam...the bathroom, no Sam...the living room, no Sam and I finally spot the freezer door opening on it's own. I don't see anyone but the door opens so I grab my Flip video and this is what I caught...

Now I think you have to appreciate that Sam got out of his hospital bed by himself, scooted on his butt into my bedroom to retrieve a pair of his socks and pajama pants which he proceeded to put on. I'm guessing that was for better movement and less friction on the skin. He then scooted or army crawled from my bedroom into the living room and on through the kitchen. I know some of you are thinking how long of a shower did you take?? Let me just start out by clarifying I am not a morning person, I don't drink coffee and my shower is my wake up and honestly when Sam has something on his mind and he is on a mission he can move at warp speed. Now, if you were trying to teach him how to let's say write his numbers, read a book, empty the dishwasher the picture of this pops into my head.

Now I don't normally consider ice cream a breakfast food but come on when you have worked that hard to get could I say "No"??

I mean can you say "No" to this face???



  1. LOL - I think he deserved that ice cream! He worked hard for it! Way to go, Sam!

  2. Man with Jax unable to communicate, I have become the queen of signals!LOL I think ice cream for breakfast sounds like a great idea!!

  3. How precious is that!?! I'm proud of him and he doesn't even belong to me!!! Yea, Sam; Yea, Mom; Yea, flip phone!!!

  4. Way to go SAAAMMMM!!!! That was awesome! How proud you must be of your little man! That was such hard work and you, the amazing mom, made him complete his task, all on his own!
    There isn't ANYTHING that Sam can not accomplish!!!

    Raquel and Noah

  5. Hi Sue,
    I enjoy your Sam-stories. I'm up in Rhinelander where I have almost zero contact with any children with ds (I've only seen 2 children on 3 occasions in the last 5 years since my own son was born with ds) so I love feeling connected through the blog world. Thanks!
    Cindy White