Alex is doing great! We have ebeen advancing feeds pretty easily and he has remained fever free. He received IVIG (to boost his immune system) on Sunday. His fever broke after that so the question remains whether he was getting sick. We stopped antibiotics this afternoon and we will watch over the next 48 hours to make sure he continues to do well. Assuming all stays on course we will be discharged on Thursday.
We had a GI test done today to see if we can find a cause for Alex's excessive bloating and xray findings. We should have the results tomorrow. We are also watching his blood counts closely as he is very close to transfusion level.
Alex feels really good and has spent he day playing and enjoying hanging out with his "girls".
We have been so lucky to have met some incredible people along this journey. There are a few families that we have formed true friendships with. We lift each other up when we are down, check in with each other, get each other drinks and snacks and cry on each others shoulders. Several of these families have had a rough week and could use our prayers. Please think of the Knight family this week as they say their final goodbyes to precious Cooper and lay him to rest. Cooper had a joy and smile that was infectious. We will all miss him. Also, pray for sweet Lily who had to be moved to PICU yesterday after having a code called. Christy and Tyson and incredible parents and people who I have grown to love over the last year. Last, please pray for Chad and Leah and baby Cade that they can get home and stay there as Cade has spent much of his first year inpatient. When Alex and I are bored and lonely, they are the ones we go find. cade always brings a smile to our faces and Alex likes to flirt with Leah! It amazes me daily, that in the midst of these hard times we are able to form this family of support who along with the nurses and child life have become our family away from home. Having a loving support system here makes it so much more bearable for both me and Alex.