Bear Hugs

Today we had a routine CT scan to make sure your shunt is functioning properly. While in the waiting room, a lady came by and gave you a special bear pillow. She gave Bubby one also! It is so great that TCH has volunteers to love on kids like that. Even for you, the toughest girl ever, the machine that does CT’s and MRI’s is scary. I imagine older children who have an idea of what’s coming are most likely pretty anxious. A teddy bear to squeeze might be just the comfort they need.

Wheezy Breezy

Your brother is sick; he wheezes with every breath. And, perhaps typical of a big sister, you think it is hilarious.

Your laugh is so grown up these days! For such a tiny girl you give some mighty big and precious belly laughs! It is absolutely my most favorite sound in the world.

Kickin' It

To be in your stander, you have to wear shoes over your braces. And as thick as your braces are, you need shoes that are several sizes larger than your normal size. So here you are in Bubby's huge shoes. You are ADORABLE!

Kindness and Goodness

This week is the last children’s day-camp of the summer and we are talking about the fruit of the Spirit. Each day we talk about one or two, and today was kindness and goodness. I decided to use you in my devotion, so after my 4th and 5th grade class talked about what kindness and goodness was and a few examples, I went downstairs to get you.

I first came up with this idea last camp when my 2nd grade class met you. It was the day Honey stole you away for a bit, and when she dropped you off the rest of your class was walking around in the “bye-bye buggy”. So I said I would just hold on to you until they came back. I brought you out onto the playground where my kids were playing and within a couple of minutes, every single kid was crowded around you. At first it was just being a baby that attracted them. But soon it was because they realized you are a very special baby. A couple brave kids asked me some questions about you, and I always answer very receptively and honestly. When they saw that my feelings wouldn’t be hurt, a flood of questions came. We talked about why you can’t sit, walk, or talk, what the tube in your stomach is, why you don’t open your eyes, why you don’t close your mouth, why there is a hole in your mouth, why your teeth are so pointy, what cholesterol is and why Cheerios wouldn’t help you. But most of all we talked about how tough you are, how sweet you are, and how you love to laugh. The kids took turns using the Velcro on their shoes, zippers on their hoodies, and coming up with all new sounds you might think are funny. Before long our break time was over and we needed to go inside to practice the musical. Everyone said bye to you, and many of them walked away talking about how cute you are. As I dropped you off at the nursery, I couldn’t stop thinking about what a great experience that was for them.

I think a lot of times our “PC” culture prevents children from asking questions about people that are different. Some parents are quick to tell children not to stare or ask questions and basically teach kids to ignore those different people. But I feel like knowledge is the key to appreciating and understanding. I would never be offended by an honest question about you. You are absolutely beautiful, inside and out, but I know you don’t look or act the same as everyone else. It’s not like if someone were to ask me “why”, my eyes would suddenly be opened to your differences for the first time.

So today I thought it would be a good opportunity to introduce you to this class, especially since we have already had issues with respect and manners and kindness this week. Sure enough, the second I stepped into the classroom, one of my students said something inappropriate about you. My response was, “That is exactly what we are going to talk about today.” And I began to tell them your story.

Pretty Bird, Pretty Bird

The lights in your ceiling fan went out out several months ago, and all this time we have just been using a lamp on your changing table. Your room has a big window, but the direction it faces and the shrubs right outside mean you don't get a lot of direct sunlight. Good for napping, bad for seeing your new bedding that came in last week!




So this weekend we had a handyman come fix several things around the house, one of which was installing a new switch for your light. It's amazing how excited something so simple could make me. Afterward I took you on a tour to see what your room looks like. You love it.

TCH, Home, Repeat

Another trip to the hospital today. This time to see Dr. L. We are going to try another swallow study; it has been about a year since your last one and we are ready to start practicing oral feeds again. She also prescribed Miralax and Milk of Magnesium and a suppository weekly to see if that helps prevent your “episodes”. I am convinced they are related to bowel movements. We talked about a handful of other things, but I think that is the main points. You are 15.5 lbs, 27ish inches. Your blood pressure was awesome though! Everything else looks great. Keep up the good work, Babydoll!

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.