Perspective

We are home from another Dallas, Ronald McDonald House weekend. 

“Toys, Ababa? Toys, Mama?  Dallas?”

“Yes, we will be in the car for a long time, then we will get out and play with toys.” 

Repeat a hundred times and you are there! 

Lil’O’s head did not grow a single smidgeon in the last two weeks.  Bummer.  Plus the long car ride makes him hot and sweaty (despite wearing nothing but a diaper and a helmet, with a blanket covering the window, and the air on) that he usually gets some mild heat rash, so then we have to keep the helmet off for a few hours.  Another bummer.  I always sternly tell him not to let his head grow while I take the helmet off though, so I think that probably solves that problem. 

Also, have I told you he now has another brace?  One for his foot?  Yes, it’s true.  He’s got some major (MAJOR) stiffness in his left ankle and calf that prevent him from placing his foot flat on the ground.  Despite our pt continually working on it, and the Hubs and I stretching it, kinesio tape, and an ankle weight, he remains on his tippy toes on his left foot.  His tippy toe walking means his balance is terrible, and he doesn’t distribute his weight equally.  These two factors are pretty important for things like learning to stand and walk. 

Anyway, he has greatly hated the new leg brace.  It forces his foot down, which probably hurts the little guy.  We were supposed to change the adjustment so it gradually pushed his heal down over the course of many days, but the stupid thing kept falling off.  I think he is finally getting used to it, and wants to pull up and practice walking again.  The good news is that I can already tell he is so much more stable with much better balance.  I went off on this tangent to tell you that he looks like a hot mess between the helmet and the brace (and often wearing just a diaper… those braces/helmets make a kid sweaty!)

On the way home the Hubs was telling me about a little girl we met this weekend.  She was in a wheel chair and really liked following Lil’O around to watch him crawl and play.  When we were leaving the Hubs heard her say in almost a whisper, “I hope your baby gets better soon”.  When he told me the story, I almost burst into tears.  Although he is covered in plastic, he's not "sick", but that was so sweet of her.  Another mom that has been staying there for months, waiting with her infant for an available heart for transplant, was telling me about how she was reading “Heaven is for Real” with her older children.  She is trying to prepare them if their baby sister does not get a transplant.  Let me tell you, perspective people!  While I fret over no weight gain, an asymmetrical head, walking and standing, he is happy and healthy.  What more can I ask?