I wanted to say thank you to everyone who has signed up as an organ donor or has to made the choice for a family member. People like you are who make it possible for children, young adults, and adults to have a second chance at life. If you are looking into being an organ donor just follow one of these links below.
https://www.donatelifetexas.org/
The month of April has been nothing but amazing Nevaeh has been doing so awesome! Sense changing her trach she is able to vocalize. Right now she just cries if Marlee takes her toys or if she wants something she hasn’t really figured out that she can make noise continuously we know it will come to her soon. Nevaeh’s laugh is so beautiful and so cute! Anyone who hears it can’t help but smile and laugh with her. Also sense the trach change she has become more mobile and is trying to crawl and rolls all over the place, she can also stand up assisted for minutes at a time. Marlee and Nevaeh love to copy each other and have such an amazing bond it is so unbelievable. Marlee never gets jealous she ALWAYS wants to help when it comes to Nevaeh no matter what it is. We also had our first family outing on Easter. We went and saw a lot of our family members, of course Leelan and I were so nervous being our first time, but it was so awesome! The girls had a great time during the Easter egg hunt, and they got to spend a good amount outside sense it was such a nice day. Being outside for a long period of time still bothers Nevaeh’s trach and causes her to have more secretions even being on allergy medication. We also are no longer suctioning her, which is great because we don’t have to stop her from what she is doing (most of the time dancing) to suction her. She has shown signs that the inflammation has gone down in her airway and that is how she is able to make noise. Her ENT specialist isn’t sure if it was the other trach that was causing the inflammation, but that’s why he wanted to see if we could change trachs to give her a chance trying a different style and the material it is made of, we will find out more information in a few weeks at her next clinic appointment. After doing her triple scope procedure at the end of March her GI specialist discovered that she wasn’t showing any signs of reflux so now she is off of another medication! As of right now her blood pressure has also been in a good range so she is no longer taking any blood pressure medication! But on the down side her body is still showing signs that it doesn’t like one of the immunosuppresants that she is on, so per her Cardiologist and Transplant Team she is no longer on that medication. This past year has been such a blessing. I thank God every day for the family that chose to donate life to a complete stranger because we couldn’t imagine our life any other way. We had no idea what all entailed about transplants until Nevaeh went into heart failure of no return. But we are so happy that Nevaeh had a second chance at life and we are so thankful for her donor and their family. Because without them we wouldn’t have our baby girl. May 9th is the day that we will always remember and never forget. The greatest hero we never knew was the organ donor who saved our daughters life.