We definitely needed an updated blog, here we go! There has been so much time for us to spend as a family, it has been absolutely amazing! Nevaeh has turned into quite the active 3 year old! Of course her and Marlee’s bond has become inseparable. Both of the girls love the outdoors and we have taken 3 camping trips this year and they have enjoyed it so very much. It is so awesome to see Marlee turn into such a mini mom when it comes to looking after her little sister. She is always there to help! Going on our camping trips without a trach or Mickey button has been onw for the books thats for sure! Nevaeh did have her gtube stoma repaired, and her surgery was on August 27th, she did amazing during and post op. This was her first surgery without her trach so waking up after was a little different for her. I did get a little nervous because she was trying to breath out of her trach stoma that is almost closed. Of course she has her way of doing things and calmed down and we were able to go home a couple hours later. We took our first mini road trip to Oklahoma Labor Day weekend to Lake Murray. The girls absolutely loved it! This was our farthest trip without having any wound care and post transplant. Nevaeh really got to enjoy herself with the freedom of being tubeless! Then our next trip to Oklahoma was to Broken Bow and we were there 4 days. The first day we had a little scare because Nevaeh got into something and her finger tips turned a purplish red color. And I was thinking she was having circulation problems, and contacte her transplant team. They said that we should get her checked out just to make sure. She was acting normal the whole time and wasn’t bothered at all. We were not very close to a Children’s hospital, and with her vital signs being normal we decided to drive 3 hours to take her to Childrens to get checked out. They did an x-ray, EKG, and vitals. Everything looked normal, so we drove home at 4 am took a few hours to take a nap then drove 3 hours back to finish our vacation. It was the craziest thing but we are so glad that she is ok. For her birthday we of course had a baby shark themed party for Nevaeh and she sang baby shark the whole time! This was also her first year actually eating her birthday cake! She was discharged from feeding therapy a few months ago and we couldn’t be happier! After being on the wait list for speech therapy for 6 months Nevaeh has been able to get in. She has been pretty receptive to most sessions, but learning to talk after not being able to for almost 2 years poses it’s own sets of challenges. She likes to talk and see if her Speech Therapist will repeat after her like she is the therapist, it’s seriously is the funnest thing! Nevaeh has also been trying lots of new things! For months she was trying to get on Marlee’s dirtbike , and she is finally big enough to mount the bike and put her feet on the pegs. So we started it up for her and we found out she loves riding a dirt bike! With a little assistance she is able to ride around on her own. One unfortunate side that we have been praying about is Nevaeh’s trach stoma stopped closing and now she will require surgery for it as well. My heart breaks every time I have to see her get wheeled back for surgery. But I know it is something has to be done because of the risk of it being open is greater than the surgery it self. It would be so nice for Nevaeh to finally learn how to swim. If you could keep her in your prayers that would be very much appreciated. We can’t say thank you enough to each and every one of you for all the love and prayers that you have sent our family. We hope you all have a happy holiday and a happy new year!