Tough Suff

Matt from The Wheelchair Shop came to adjust your stander today. And guess what. He had to make it a tad larger! The minimum size for the stander is 27 inches. When we ordered it back in February, we had to factor in a thick soled shoe in order for you to be long enough. But since then you have grown, and the AFO’s and shoes give you more height than we anticipated. So he expanded the stander a bit and adjusted a couple more angles. Next week he will take about an inch and a half off the headrest to make it lower on your head and then it will be perfect!

We also went to the Med Center today. First we met with a doctor to go over your sleep study results. No surprise there. She said you slept fine. If you start having a few bad nights a week instead of a month, we need to figure out what is happening. Otherwise, she recommended we repeat the study in about a year.

The only abnormality was the amount of time you actually slept—eight hours. That is low for someone your age, but not for kiddos with SLOS. From what I hear, most of your friends sleep a lot less than that. In fact, 8 hours is probably impressive for you as well. I would guess that on average it more like six. From early on we talked about how even though you need only a little sleep, Daddy, Mommy and now Liam need more. So you have been very good about talking quietly in your bed whenever you wake up in the night, and let the rest of the family sleep. I can’t wait until you are able to entertain yourself, so that you won’t be bored crazy in there.

After our appointment, we headed downstairs for a blood draw to test your cholesterol. And you, the bravest girl in the world, did not even flinch when you got stuck. No pouty face, no tear, no nothing. I couldn’t be more proud.