So Grateful

We couldn’t be more thankful for Nevaeh’s procedure, so far we have talked to her GI specialist and she was saying everything looks good from a GI stand point which means that reflux doesn’t seem to be what is contributing to her inflammation, but her body is still showing signs that it is not a huge fan of one of her immunosuppressant medications. The plan is to change her to a different medication, but at this time she is not able to change to something else because the other medication slows down healing. And if the plan is to decanulate her soon then we have to hold off on the change so that she can heal after the decanulation. Sense she has started her allergy meds it has been a lot easier to keep her outside longer so that she can enjoy it. We are still not sure what is causing the inflammation, but her ENT specialist wanted us to try a new style trach that is made from something different. Nevaeh only had 2 appointments, which was so amazing to be able to spend time as a family and take the girls to the park together. Thank God for all the nice weather that we are having because Nevaeh loves being outside! Sense the change Nevaeh has been tolerating her speaking valve very well, and is making more grunts and crying loud enough for us to hear her, she has also tried rolling on her tummy and getting into a crawling position and grabbing for toys! She never ceases to amaze any of us! We will do a follow up in early May to see how everything looks after her procedure. We will also be doing a swallow study to see if she is aspirating at all so that we can continue to increase her oral feedings sense we have basically stopped because she was showing signs of aspirating. The company that her previous Physical and Occupational Therapist came from closed she has been without both but will be starting back up this month which we can’t be more excited to show what she has achieved in just a month! Next month we will be celebrating Nevaeh’s ONE YEAR POST HEART TRANSPLANT! I cannot even believe it has almost been a year! WOW the amazing things God has done for our family! These next few months have so much in store for Nevaeh!


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