We started off with the standard chat about what to do if she goes into heart failure. Is that the topic that all pediatricians open with at an appointment or are we just lucky?

Then we talked about her tumor risk. This is the part of her syndrome that keeps me up at night. We screen for tumors in her abdomen but if they were to occur any where else then lets face it, we’d be screwed. But after my conversation with the pediatrician today I am satisfied that we simply can’t do anything to screen for tumors in other at risk sites. We’re doing all we can and I guess I have to be satisfied with that. As my mom said to me today, “God already gave us Costello Syndrome, he won’t give us tumors too!”.

Developmentally, our pediatrician was really happy with what he was seeing from Ali. He called her FABULOUS! She is still doing things that he wouldn’t have expected like reaching for toys and developmentally he feels like she is “only slightly lacking”. That sounds just fine to me! He commented on how good natured she is (not expected at all) and on how much she moves around and grasps with her hands despite her lack of muscle tone. I think he was impressed!

Ali is pretty little. When you compare weight for height then she looks pretty good, but she is fairly skinny. She is smaller then the average baby for sure and although she’s fine now, if the trend continues then we’ll have a problem in the near future. With that in mind we’re going to put Ali on a more concentrated formula to try to get her more calories. She hasn’t gained any weight in the last 4 weeks but she did grow in length by 1.5cm. She used to be short and fat and now she’s long and skinny!

He also thought that her eyesight was much improved!

It was a good day!