4 months

     Charlotte is a whopping four months now! She is 7 pounds 4 ounces and growing. Charlotte is becoming much more expressive and interactive now. She loves her mobile above her bed, sitting in her bouncy chair, staring at the lights and sounds, and sitting in a warm bathtub. Most of all, she loves to be held. David and I love holding her. Now that she is the size of a normal full term baby, it is easier to cuddle her. The nurses say she is definitely their favorite. Maybe it's because they have gotten to know her so well in the 4 months we have been there!
     Charlotte will have a sleep study on Wednesday to see how much oxygen she will need when she comes home. Then, the doctors have agreed it is time to place the g-tube in her belly for feeding. This is great news, because that is the last  step before Charlotte can come home! She will work on swallowing as an outpatient with a speech therapist that will come to our house. When she is able to swallow correctly and drink a whole bottle, she will have the tube removed. She had her bone marrow aspiration surgery, and it showed that her red and white blood cells are normal. However, she has 1 platelet. A normal count is 150,000-400,000. Tentatively, the hematologist has diagnosed Charlotte with CAMT. However, there has been no gene found that causes this diagnosis. So, we are getting a second opinion from doctors at Texas Children's Hospital who are experts in this diagnosis. We are going to meet with the transplant team at the University of Maryland tomorrow and get lots of information regarding the next steps with Charlotte's transplant.
     Charlotte has her own Facebook event now to encourage people to register to be a bone marrow donor. The event was a huge success. We reached out to almost 7,000 people and counting. Countless amounts of people have registered to donate and we could not be more excited. If you would like to register to be a bone marrow donor, consider signing up online. They will mail a kit to your house and a simple swab of your cheek could save a life. We believe that this is the purpose of Charlotte's journey.
     Most people don't know this story, but one day right after Charlotte was born, a man and I were riding the elevator at Mercy Hospital. He saw my purple NICU badge and asked, "Did you just have a baby?" I replied, "Yes. I just had a baby girl." He said with a big grin on his face, "Maybe she'll be the first female president!" I smiled politely. After he stepped off the elevator, I began sobbing. All that I could think about was how hard Charlotte was battling to survive. How could anything good come from our situation? Now I know I was dead wrong. Charlotte is helping other people find their life saving bone marrow match. She is helping save other people's lives at 4 months old. What a change she is making already.

https://bethematch.org/Support-the-Cause/Donate-bone-marrow/Join-the-marrow-registry/