Nevaeh is going to be 1 next Saturday, October 13th! I cant believe that 1 year has already gone by. Its still hard to believe that she has gone through what she has. LVAD, Heart Transplant, Trach, and G-tube (feeding tube) are the operations that she has been through. All of the recovery time is where Nevaeh has her delays. But looking at this sweet girl with her trach, not able to say a word she always knows how to make people laugh, and always has a smile on her face. Now that she is up to 14 hours off the vent, and is taking her feeds in by her g-tube in an hour she is getting more time "disconnected" so that means she can work on her mobility more. She is on a waiting list to go to OCH for her sleep study. Which should be in a month or less. She will be off the vent for 3 days straight, and on the 3rd night they are going to cap her trach. Which means that she would be breathing completely on her own and would be pushing air out of her nose and mouth instead of her trach, and would be able to potentially talk! Every week she is getting better and better! When she first came home some of her fine motor skills were lacking, but now she is clapping her hands, grabbing small toys with 2 fingers, loves giving out high fives, and is also trying to sign! I will be taking birthday pictures of her and letting her have an icing cupcake! We wont be having any type of "get together" party, but we will be celebrating as a family for her because of her being immune compromised, but have already gotten some nice gifts for her from family and friends which we are so greatful for. Of course we wanted to have a big first birthday for her like we did with Marlee, but it is in the best interest of her health that we keep our distance from large crowds. On the 9th of this month she will be 5 months post heart transplant! We consider May 9th to be her other birthday, which is the day that she received her heart transplant. If you would like to send her any birthday gifts/ cards you can leave a message in the comments or message one of us from her Facebook page. https://www.facebook.com/groups/COTAforTeamNevaehE/


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