First week of preschool was a success! Jaxson easily got back into routine. He’s so excited when he sees the bus pull up in the morning and we have to wave as it drives off in the afternoon. His first week consisted of getting acclimated to school, his peers and teachers. As far as I know, they’re working on basic things to get him caught up. He has a speech therapist who helps him with communication, and physical & occupational therapy to help him walk, play with toys and other age appropriate activities. They read books, and do little projects as well. His first one was a puppet raccoon. 🙂
I have been in touch with Lucile Packard throughout the week as well. On Monday, the transplant coordinator called me and informed me that our insurance won’t cover a multi listing. So, for many reasons, I told them that id like to transfer his transplant care to their facility. They reached out to insurance again to see if it would be possible to stay listed in Pittsburgh while being evaluated at Lucile Packard so he doesn’t miss any opportunities in the process. After multiple failed attempts to get in contact with the transplant case manager at our insurance company, Lucile Packard called me today and asked if I could try to call case management myself. She returned my call today and told me that they will not cover two evaluations, so we are waiting to see if Lucile Packard can list him based on all that was done in Pittsburgh. If they cannot, I am able to appeal it and hopefully get it approved after that. Even though Lucile Packard isn’t a center of excellence like Pittsburgh is, it is still a wonderful hospital and ideal for our family because it’s closer to home. We would have to be there for up to 6 months post transplant, and in Pittsburgh I would have little to no family support. It would be so much easier for family to drive/fly to California on a regular basis than to Pennsylvania. So, please send all the positive thoughts you can that this works out for us.
It is also still short bowel syndrome awareness month, and although I haven’t been posting about it as often as I want to, I did paint my nails and made one purple because Jaxson was born prematurely due to SBS. It has sparked a few conversations at the grocery store & Starbucks (those are the only two places I ever go😂)
I’d like to thank my mom for recognizing it everyday on Facebook. She has been posting pictures of Jaxson throughout his life and using he hashtags #shortbowelawareness2016 and #SBSawareness2016. Also thank you to my friend Jami and her family for wearing blue for Jaxson a couple times this month! Share our blog on social media, ask questions, make people aware of this condition and what Jaxson and other kids (and adults) like him go through. 🙂