KKI

Chloe had an appointment with specialists at the Kennedy Krieger Institute in Baltimore on February 20. It was a wonderful appointment, and I can't begin to tell you how impressed we were with everyone that we encountered. It was all around a pleasant experience, and Chloe was great the whole time.

We first met with Dr. Sponseller, the orthopedist. He said that her bones looked impeccable - no fractures to be seen, no bowing, no deformities! yeah! That was wonderful to hear. We then met with Dr. Shapiro, the endocrinologist and the physician that heads up the OI Clinic. He sat with us and let us ask any questions that we had. Both doctors agreed that Chloe is presenting very mildly at the present moment. She was cleared to do all forms of physical activity, except for contact sports. So, she can take dance, play sports, etc. She is even allowed to jump like a normal kid (no trampolines though!). We will take her back for a check-up after she turns 2, and at that time we will have a DEXA scan done to measure her bone density. At this point, we will probably take her in for a yearly check-up.

Basically, Chloe has the best form of OI that you can have, and we were very relieved to finally talk to someone who knows all about the condition. I honestly feel that I can now just enjoy my family, some of the worry has been alleviated.

We also met with a nutritionist. For her length and weight, she is around the 7th%. That is low, but the nutritionist said that her OI kids usually fall between 5-10%. So, that appears to be the norm for them. However, she is small, and we are now supplementing her meals with pediasure (even though she isn't 1 yet!). We are currently working on learning how to use a straw cup. We will also be checking in with her nutritionist every 3-4 weeks with a weight check.

Chloe is also receiving PT 3x/week, and is making wonderful progress! She hates PT and screams through the entire thing, but she is actually working through the motions now! We are really focusing on strengthening her abdominals, and crawling. Because of all the focus on the floor, she is not "walking" anymore. She seems to have developed a fear of it, but we are working through that.

As for my other child, Noah is enjoying preschool much more these days! He is less clingy when I drop him off, and he seems to really have a wonderful time while he is there. He has really developed a sense of imagination these days too! He has a pet caterpillar, and we now have some house pets in the form of dolphins, whales, and sharks. They like to swim all over the house. He names everything Wall-E or Eve.

Noah is also obsessed with Little Einsteins. He insists that his name is Leo (and will only respond to that name), Daddy is Quincy, I am June, and Chloe is Annie. It is incredibly cute!!!!!