Sorry it has been a couple of days. When Alex has irritable days it really takes its toll on me. It is exhausting and there is no way to get away from it. Because we have so muc trouble controlling his ammonia we are now bumping his rate one day and then holding a day to give his body a chance to adjust. It just means we are stuck here that much longer. He had a pretty good day yesterday until last night. We were trying a new laxative to replace miralax. It is supposed to bind ammonia so we thought it might be really beneficial to Alex. Well, it bloated his little belly so badly his was miserable. He cried and fussed and screamed for 2 hours at bed time. Needless to say we WILL NOT be using that again.
Please say extra prayers for Landon today. Hr is getting his new central line. If this line gets infected they have no options left. There are no more places to put one. It is literally his life line. Understandably, a scary day for Jen and the whole family. Pray for me to have the strength and peace of mind to say and do the right things to be there for her.