Petty Syndrome

This will be a short update as it is approaching 9pm and it’s been a long day. Nora is asleep but she has not been such a happy girl this evening. She is not a fan of how her little legs feel after they get a shot in each thigh. That was this morning, along with our appointment to check on her weight and to review our UVA trip with her pediatrician here. We felt grateful to see the numbers on the scale going in the right direction again. She weighed 6lb 9oz this morning. We will continue to weigh her at home and don’t have any scheduled appointments now for a month. That feels good!

I’m attaching two things here for anyone interested. One is a collage of pictures of Nora and Kali. Nora is really enjoying looking up at who is holding her and her smiles are particularly sweet for her big sister. The flowers in the middle signify a turning point in our year – time to venture outside more with Nora. Kali had helped us determine when we would know that Nora could come outside and her criteria was when we saw “three yellow flowers.” The daffodils were a welcome site for this family. And we have enjoyed a few more times outside lately – including a short family walk the other evening. We look forward to more of those times in the future.

The other attachment is the article describing the syndrome Nora has been diagnosed with by the geneticist at UVA. I wasn’t sure whether or not to send this on but know that some of you will be interested in more detail. Jason and I have both been surprised at how we have experienced some relief and even hope in having a little more information. Also, the new things Nora is doing all the time can’t help but encourage us as well (she has discovered her toes and knees!).

It is clear from talking with several doctors and persons that work with feeding issues at Kluge Rehab in Charlottesville that it is important that Nora be with me as much as possible for the foreseeable future so that she can breastfeed on demand. So the next steps for us are figuring out how to juggle my work and our family life in a way that is sustainable and works for all involved. I imagine being quite tired in the coming weeks. On the flip side it has been good for me to have more time with Nora to get in a groove and rhythm with her care. I feel like we are understanding each other much better and that is a relief.

We’ll be in touch more later, Janelle