If you follow us on social media you know Noah had his follow up swallow study this morning and I know you are wanting to know how did it end? Overall, it was very positive. He showed huge improvements from his first swallow study. He is still aspirating almost every consistency of liquid. It's interesting during today's study he only aspirated on his first swallow and then did great from there. The speech therapist said that can be a normal variant in swallowing, but to keep his lungs as dry as possible, they still want to be conservative. If GI and pulmonology are in agreement, speech is comfortable increasing his fluid intake by mouth from three one-ounce-portions to five or six one-ounce-portions of liquids a day. Huge step forward! He is still going to rely on his tube as his primary source of hydration. He also did great with solids and purees so no changes there and he is all clear for a regular toddler diet. Go Noey!!! Rounding out his appointments in the next couple of days are: GI tomorrow, surgery on Wednesday to show us how to change his g tube button, and feeding therapy Monday where we will continue to craft a plan for him as it relates to liquids. 

We also got to walk up to the rehab floor today to see our favorite rehab staff. The staff loved to see how well he is doing and he loved showing off his running and all of his words. His speech therapist was THRILLED to hear how his swallow study went. I shamelessly asked her to review it, juuuuuust to make sure she agrees. We love Ms. Amber! 

The other big news in Noey land is he is not going back to daycare until October now. Our original plan was for him to go back in June to let cold and flu season end, but after talking to his pulmonologist we decided October was the safer choice. It was a very sad decision to make because as you know, we love our school and we want Noah to be back with other kids and loving on his favorite teachers.  When we talked to Noah's pulmonologist he said he would be most comfortable if Noah returns to school when he is two. We learned during our call around the age of two your body's t cells mature (did I know what a t cell was before we talked to him? definitely not...) and your t cells help you fight viruses. Obviously we know it was a virus that made him so sick so all virus fighting t cells are welcome to join this party. Can I donate some of mine? No? Ok, next idea. 

The conversation with his pulmonologist was a reminder of two things: one, he is still very vulnerable, and two, that Noah's world has gotten very small. We have a very small list of places we will take him these days. He goes to Ryan's parents' house during the week and absolutely loves it. Every time he gets in the car he says, Mimi! Papa! and if we aren't going there it's a real let down. We'll take him to the grocery store because it's open and well ventilated and of course because he can wave at everyone. We take him to church and keep him with us during the service so he isn't in the nursery around other kids. We have met the nicest woman who works for the church who takes him with her for the sermon so we can both listen. Noah loves his special time with Ms. Susan at church. And then we'll take him anywhere that we can be outside. So we'll eat outside or go to the park, but that's about it. He's really not around any other kids his age any more and there are days that it makes me very sad. I remind myself that it's what's best for him for now and sacrifice in the short term is completely worth it to keep him safe.

All of these appointments and precautions so that in ten years when we tell someone the story about the flu, and a hole in his lungs, and his blood circulating outside his body they can ask us, how did it end? and we can say, it ended just right and point to our perfect blue-eyed boy living his perfectly normal life.