I wanted to jump on quick & give a Kennedy update.

Over the past few weeks we have spent a ton of time at Gillette while Kennedy has been going through NMES therapy. You will see in photos they hook up electrodes to her throat and shock her muscles while she drinks. I am SO proud of her and happy to report she has overcome aspirating while feeding (no more liquid going into her lungs). After a repeat swallow study this week (third time really is a charm) she passed all levels and didn’t aspirate!! So no more feeding tube, thickened formula or shocking her muscles!

While one step forward we took one step sideways as she didn’t do so great on her sleep study this week. Although her numbers did improve overall she still has central and obstructive sleep apnea. For those who don’t know sleep apnea can lead to SIDS (sudden infant death syndrome). So for now she will stay on oxygen when sleeping and her oximeter. We have follow ups with neurology, genetics and pulmnology to figure out where we go from here.

Overall Kennedy has overcome torticolis, craniosynostosis and aspirating all within 6 months. She turned 6 months old TODAY and we couldn’t be more proud of this very very strong & brave little cookie. 

We wouldn’t be here without all of your love and support. Thank you.