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The end of July Nevaeh had her transplant surgery to check for rejection and to see how her heart is doing overall. All function of her heart looks great! She is also still getting her shots Monday, Wednesday, and Friday every week for her white blood cell count being low. She has been very receptive to the shots so she will continue them until her body starts making white blood cells of its own. Right now there is no given time frame for when she will stop the shots, but it is helping her. We still have to be very careful with her being around large groups of people because on top of her being immunocompromised, she is still not making her own white blood cells which would make it where she has a very hard time fighting any type of sickness.Nevaeh’s has been very successful in having her trach capped (no air going through her trach in or out) which has made it much more freeing for her. She will have a sleep study at the end of this month to see how her breathing is while she’s sleeping so we can have more answers moving forward with her trach. She has become a lot more mobile and has started trying to take small unassisted steps and she is getting into EVERYTHING. She found out she is tall enough to reach the door knob, and her favorite thing to do is if she gets near any trash cans she likes to pull out anything that is inside of them. Dancing is still her number one thing to do, and she loves to show Marlee who’s boss. When it comes to feeding therapy Nevaeh has been making some big moves and is excepting a sippie cup or as Marlee calls it her “sissy cup” and a large variety of foods. She loves to snack any second of the day while she is awake, and prefers to feed herself and not be fed by someone else other than her mommy. As her oral skills are getting better she has been more excepting of taking foods even from her feeding therapist. Which makes feeding therapy sessions a lot easier! We have also started reducing her tube feedings, so she is receiving more food by mouth than tube feedings. Nevaeh’s birthday was Sunday and she had THE BEST time! She doesn’t seem to be a huge fan of sweets though. When she tasted the frosting she made the same face as last year, the this is too sweet face. It was such a beautiful day so she got to spend a lot of time outside! Somethings that we are praying on is getting towards the next steps of having Nevaeh’s trach removed successfully. To have her stay well enough to get the trach removed. Also to keep her immunosuppressant levels to stay in range. We have a 5k run and walk fundraiser event in honor of Nevaeh to raise awareness for organ donation on November 9,2019 we are hoping to hit our goal of $1,000 for the cause and at least 30 runners please if you can we would love to have you. The link for the 5K and Walk website à  https://www.itsyourrace.com/event.aspx?id=12741&fbclid=IwAR1bG7Cqx3CzWv-x3nfThsfh2Px674Jak6oM5c1nAaaGeEmR4PcOXvLZqdk

You can also visit the event on Facebook search Cota for Team Nevaeh E.


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