Burp hiccup hiccup

Yesterday we were able to celebrate my Grammy's 70th birthday. It was a fun time getting to see my family and some people I had not seen in a long time. It was fun to talk with my cousins and to see others smile at Jillian. Jillian was like a Ping pong ball during the party. She was here there and everywhere!

She LOVES her gears!

I'm going to bite this mask if it must be one my face!

Today she has been full of burps and hiccups. I lost count of how many times she has burped and had hiccups today. It has been a long time since she has been this burp/ hiccup filled. She had hiccups a lot when she was little. Oh the interesting things of jilli.

The tell tale pose of Jillian refluxing while she sleeps

We started Jillian on a new med Thursday night. We have ping pong girl! She is very hyper and has a mini attention span. One of my family members who was at the party (who works at a pharmacy) commented on how she figured Jillian must be on something with how everywhere she is. We will see how it continues to go. She goes and goes until she literally falls over meaning her naps have not started until around 4pm and then she gets to bed later because she naps so late. 

I will not lay down... even though I'm in my bed and taking a neb! 

She loves to try and put her own coat on

I have started a new adventure! The feeding tube community has done so much for us and I wanted to give back. I have become a Tubie Friends surgeon. Tubie Friends is a non for profit organization that puts medical equipment into stuffed animals for children who have medical needs. I had looked into getting Jillian one and realized all the hard work the organization does and decided to join the cause! This weekend I have put feeding tubes into 5 animals. We do not charge families for the bears (that are paid for at full cost). We ask families if they can help with the cost of shipping however if they are unable money is raised to cover that too. If you would like any more info I would love to tell you all about this great organization!

My Friday afternoon. Thanks Dan for the coffee!