Exciting Week Ahead!

Let me start by saying, THANK YOU to everyone for your kind messages about our video. A lot of hard work went into telling our story while keeping our message of positivity and hope in there. We are so grateful to the hospital staff and videographer for their commitment to this project and to being true to who we are. As we embark on our journey this week, we ask for everyone's' prayers and support. We pray that the legislators we meet with hear our story with open ears and it impacts their votes on healthcare.
Here is the link for anyone who is not on facebook:
Alex's Story

I will be posting pictures on facebook and Instagram throughout the week and will update here next weekend.

In the meantime, we have been staying busy! On June 8th and 9th, we celebrated Alex's birthday with friends and had so much fun!

Main Event

The last year of friendship with the Glenn's has been so amazing!

The week of June 10th, Maddy did a fun camp at Texas Ballet Theater. She has loved her time dancing and especially loved this fairytale camp. 

The past week has mainly been quiet as we rest up and prepare for our trip.  Maddy did yet another ballet camp! (She can't get enough)! Alex got to help/attend a tour of the hospital with some of his favorite people from Extra Life. Alex had an appointment with nephrology. His symptoms and labs are improved so we will continue the two new kidney medications for now. We will repeat some testing when we get back to see if any of the medications need to be adjusted. Alex also had an endoscopy and tube change with anesthesia on Wednesday. We changed amddy's tube for the first time here on Friday and she did great. What a difference that tube has made this year. Maddy gained 11 pounds in the last year since getting her feeding tube. She has grown, made huge strides in therapy and thrived in every way. 

Thank you for your prayers over the next week!
Ali