June was a very busy month for Nevaeh, she got pneumonia and had to have her procedure for transplant rescheduled twice. Also the immunosuppressant that was causing her white blood cell count to drop her cardiologist decided the next best option that she be take her off of the medication. Because her white blood cell count is so low her transplant team referred her to a hematologist to look into options on being able to help bring up her white blood cell count. Now we are giving Nevaeh shots at home 3 times a week to try and help bring her count up. Unfortunately the side effects of this medication doesn’t make Nevaeh feel very well she ends up having a fever, bone aches, and being nauseous. Her hematology team is trying to find a way to give her enough medication to help her levels go up but not so much that she would have such extreme symptoms. So far we have not been successful in giving her lower dose and have her count go up. So she has been getting labs two to three times a week as well as getting shots 3 times a week. It has been very tough seeing all the bruises on her little arms for sure. But you wouldn’t be able to tell that anything is going on with Nevaeh has been enjoying the outdoors with Marlee every single day! With it being so hot it is easier for her to be outside in the early mornings or the late evenings. She loved all of the fireworks during the 4th of July. She was not bothered at all with how loud they were, she would just laugh and clap at all of it. Nevaeh has become a crawling champ and there doesn’t seem to be anything that she can’t get into, and she is also pulling herself up on everything which scares the life out of me! Also her favorite thing to do is if she sees any open doors she has to shut them. She also loves to dance to any type of music, she is up to 4 dance moves and she will dance all the way up until she falls asleep, she has also started drinking out of an open cup all on her own. When it comes to eating this girl can get down! There doesn’t seem to be anything that she won’t eat! We went to a wedding one weekend and she pulled some brisket off of my plate and ate it! She is now working on her second set of molars so she is up to 19 teeth (almost has all her baby teeth in) and that seems to be helping when it comes to textures. She is doing really well with outpatient feeding therapy and her therapist feels very hopeful for her. She gets more oral feedings then she does tube feedings, but because she is still the same weight that she has been for the past 2 months her dietician hasn’t wanted to take any more tube feedings off at this time. Nevaeh still has her trach in at the time but she will be seeing her ENT specialist in late August to see how she is doing with moving steps forward. She now says, “bye-bye (while waving)”, “Mama”, “Dada”, and “bubble”. Funny thing is she has never really been a fan of bubbles or at least when they come near her she mean mugs them. She squeals, giggles, and loves to blow raspberries at any one who looks her way and also gives the best high fives. She is seriously one tough cookie, and I couldn’t be more proud of how far she has come! If you could please say a prayer that we figure out the blood issues that Nevaeh is having, and that her team can find a solution that she isn’t having to get poked so often, and to also move forward in the next steps with her trach.
This is a verse that has been speaking to my heart these past couple of months.
Isaiah 43:2 “When you go through deep waters I will be with you. You will not drown.”