Surprise!

 

It’s true we have been waiting to tell y’all some amazing news! So many things have happened in the month of May and it has been one excitement after another. There are some bumps that we have had along the way but we are looking at the blessings that we have been given and focusing on the power of prayer. We couldn’t be more excited to announce that NEVAEH IS CRAWLING! She can also stand while holding onto something. She is working really hard on pulling herself up, but she can stand up from a sitting in a chair (Nevaeh sized). She has also gotten a new speaking valve that has seemed to turn up the volume on her voice. So now she is babbling, of course laughing, and when she wants something she will cry. We are so excited to get to hear her talking, because when we are all around her and talking to each other she always has so much to say. When it comes to feeding, her swallow study showed that she is having no signs of aspiration so she was cleared to have food and water by mouth as much as she can tolerate. Soon as we got home her celebration food was apple sauce and she ate 4oz! That was on May 8th when her swallow study was and now she is eating up to 15oz of food by mouth a day! We have also started taking down some of her tube feeding as of this moment we have taken off half an ounce. She will see her transplant team in the next few weeks and get a weigh in and see her dietitian as well and see if maybe we can do some more tube weaning. If she is still trending weight upward then we should be able to wean some more. As of right now we are going to see a feeding specialist to see if that will help with some of her oral aversion and help with textured foods. She still is not wanting to put anything in her mouth while her teeth are coming in and she is working on her 16th tooth! They all seemed to just pop in all at once! Sense the weather has been nice we have been enjoying some time outdoors and she is loving every second of it. Because of still having her trach we can’t stay outside hours at a time or it will dry out her lungs. Her last visit at vent clinic her ENT specialist put in the order for her ventilator to be picked up, we were so happy to see it go but so blessed that it was able to help Nevaeh breath outside of the hospital. Because she no longer has the ventilator she no longer needs to go to Vent Clinic, so she has graduated to Pulmonary Clinic. One step closer to losing her trach! She gets an X-ray of her lungs every time she sees her Pulmonologist, this time it looked to be fluid on her right upper lung so her team was very quick not to rush towards decanulating her due to the abnormal X-ray. We are saying a prayer for her next upcoming X-ray to not have any fluid on her lung. We aren’t sure what it is from sense she has seen her transplant team and pediatrician who both cultured her for any type of respiratory illness and both came back with nothing. But she did have her bronchoscopy (procedure of camera looking into the lungs) at the end of March so her Pulmonologist is thinking it could be due to the camera going into her lungs, but he is not for sure. She also has an annual surgery coming up to see if her heart is showing anything abnormal from her transplant, the upcoming X-ray will indicate if we are able to go ahead with that surgery soon in the next coming weeks. Please keep Nevaeh in your prayers and thank you always.

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