Attitude Central

Annabelle is ripping and roaring with personality and attitude. She has an opinion about everything and while it makes me want to pull my hair out, it also makes my heart burst with joy. She’s so full of life! She’s happy for the most part, but when she’s mad, she’s mad. We are working really hard on how to help her cope when she’s frustrated and what those feelings are like. She isn’t processing them very well and it comes out as very spiteful behavior. I look forward to meeting with Behavioral Health when we return to Cincinnati in a few weeks. Her focus is nearly impossible to manage, her attitude and thought process is so different from any of the kids in our home that it makes for some very frustrated days in our house.

Her energy levels are depleting, to a scary level that is definitely causing concern for us and her nurse. I don’t know if this is because of her current nutrition (she’s eating better but still very littler, therefore we are tethered to her feeding tube for most the day). When dancing or playing at home, she gives herself about 5min to jump around and immediately afterwards, she wants to lay down and ‘relax’ so she tells us. In school, during gym class, she will run or skip with her friends but can never finish the short exercise without walking herself alone to the bleachers to lay down. These are everyday fun, 4yo activities that all kids her age are able to do, and Annabelle can’t even keep up with skipping before she’s too weak to stand. I don’t know if this is accompanied with pain, or just tired, weakness or what – Annabelle won’t tell us these things. She just has to lay down and won’t move for a very long time. When she gets back to the classroom, she’s exhausted. It’s things like this that worry me about school and how well she will do when she enters Kindergarten. The closer we approach our next visits in Cincinnati, the more questions I have for our team. I am so grateful we will see NeuroMuscular and Rehab when we go. I hope they can address what this is all about with her joints, muscles and energy.

Regardless though, we have a snow storm here to watch out for. The kids are so excited to be able to play in the snow and I am looking forward to it for them. Last year, Annabelle was only able to withstand about 30min before she couldn’t walk, stand or maintain much consciousness. When I brought her inside, her temp was 94 degrees and took me the rest of the day to warm her little body back up to the point she could begin to walk and run around again. This year in the snow, she will have to pace herself – maybe 10min here and there until we can define how well she’s balancing her body temperature. She wants to make a snow angel though and have a snowball fight .. so we will do our best.

I hope everyone that is in the line of this snow storm is safe and is able to enjoy it as much as you can!