Hi everyone! This update will be short and sweet, as not much has changed. Ezra is still doing very well and continues to improve each day. Right now, his skin is peeling from one of the chemo medications. They call it a “chemo tan” because it darkens the skin, then it peels off and returns to its normal tone. Although the doctors have been very happy with him, we unfortunately won’t be discharged before Christmas due to him still needing to be weaned off of certain medications (he is almost completely off his pain medication which is great!) and having other meds changed in preparation for discharge. They are expecting that we will be discharged by the middle of next week if all continues to go well. We are so grateful that God has had his hand over Ezra during this journey and truly believe it is the power of prayer that has gotten him this far, so we THANK YOU!
Karlita is going to lunch with two mothers of little boys with the same genetic disorder as Ezra on Friday. One who is over a year post transplant, and one who was just admitted to our same unit last week. This will be a great time to connect with other families who are going to through/have been through the same thing (and to escape the hospital!). Although this Christmas is not what we thought it would be, our family of 3 is grateful to be together and are looking forward to spending the day celebrating the best that we can. There is a possibility Ezra will have a 4 hour pass by then and we can leave the hospital and head back to the apartment, which would be great.
Thank you all for your continued support and prayers. We still have a ways to go in terms of recovery and it is hard to know we will still remain in North Carolina for a few months, but the support system that we have and the amount of people who are praying for our little boy is nothing short of miraculous!
The 3 of us!
Lounging comfortably on mama
At the end of his stroller ride during his 1 hour hall pass
Santa came to the hospital to visit!
The engraftment poster that his nurses made