Have Faith

 The month of February I would for sure say has been quite a lot of doctor appointments, because Nevaeh was showing symptoms of being sick and we needed to figure out what was going on. At the end of January she had a week of coughing and fever and running 3 separate test, one with her pediatrician, transplant team, and her pulmonologist, and all of the results came back negative. Which was such a blessing then come to find out that she had a hematoma in her gums from where one of her molars wasn’t cutting through. Her dentist wasn’t sure what was inside of the hematoma, he said it could be anything from puss to blood. To be on the safe side he wanted to prescribe her heavy antibiotics for the next 10 days. After the second day the hematoma was almost completely gone and she hadn’t been running a fever sense she started the antibiotics. While she was fighting off what her dentist and transplant team thought was an infection she also got her regular labs run at her cardiology appointment which she is still having once a month. The levels on her labs were showing that her immunosuppressant levels where lower than then normal and also her white blood cell count was very low, which would mean that she is at a higher risk than normal to get sick. With that test result the transplant team wants us to isolate her more than we already do but we actually don’t ever take her anywhere unless its to a doctor appointment, so her changes are very low because we keep her pretty well out of the way of getting sick the best that we can. We always keep a mask on her, and sense flu season has become so out of control we have started wearing mask ourselves to keep her safe. The hardest part of me putting all this into words is how everything is going with her trach. Of course the plan was for her to get her trach out at the beginning of spring, but she is barely tolerating her speaking valve at this time because her allergies are causing her to have more secretions, and she coughs so much that I have to take it off or her heart rate goes very high and she starts to cry. Having the hole put in it has for sure helped a lot because she wasn’t able to release any excess pressure while wearing it. The swelling in her airway is so bad that it takes a lot of effort for her to make any noise. That’s why the first time that I heard her laugh it was so quite. It brings me to tears to see her struggle, of course all we strive for her is to have the best quality of life. She is doing a lot better with tummy time, she seems to roll over a lot quicker and scooting across the floor to get something that she wants. When she is in her walker she is standing very tall and her legs no longer shake when she bares weight on her feet. The cutest thing that we see her do is that she army crawls backwards! She is such an inspiration to us all that no matter what gets thrown at her way she is still rolling, and army crawling backwards through the whole way. She is so in love with all things words, and she is picking up sign language so well! She signs, “more”, “yes”, “hungry”, “stop”, and “eat” she prefers to point or pat someone when I ask her who is who. And she looooooves to give high fives!  Nevaeh’s procedure will be at the end of March, we always appreciate all the prayers. This procedure will give us more information on what kind of treatment plan we will be looking forward to remove Nevaeh’s trach. In a very specific prayer request we are praying that our baby girl will not require reconstructive surgery to remove her trach. As always thank you for all the prayers, and following Nevaeh’s journey.

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