The Hard Part

At 3:30am we woke to the sound of Landon crying, hard... I went to his room to check on him and within a moment he threw up. He probably threw up his whole feed which started at 8pm. Jimmy rushed to his room and we took our positions- me undressing and comforting our boy and Jimmy grabbing towels and changing sheets. We can tell when the moment has passed because he stops screaming and crying and begins to talk to us. Jimmy put him back in bed and he said "nigh nigh..." It just melts our hearts. During the process of clean up Jimmy and I both rack our brains to try to figure out why it happened. Was he coughing or sneezing today (mucous from a cold often results in vomiting), did we speed up the rate of his feed, when making the formula was the ratio of powder to milk right? I think we both feel a little better about it when we identify why. The why for last night? A combination of speeding the rate up and maybe some congestion... He coughed a few times throughout the day and I heard a little congestion in his chest. Then I give myself a silent lecture for not knowing better- a mom thing I guess... As we laid back in bed, Jimmy said "this is what bothers me the most- not the medicine, the feeding tube or anything else.." He was do right. Cystinosis isn't much of a big deal anymore, but hearing him scream from his belly hurting and watching him throw up like that.. You just don't get used to. Fortunately, he probably does this once a month and it's not a daily or weekly. So for today, we will cut back on the amount of formula he gets through his tube, slow down the rate and keep an eye on any respiratory symptoms. Tonight we will slow down the rate and hope for the best... So far, so good. We have a resilient little guy on our hands!