Tuesday, I posted pictures of Emma sitting up unassisted for the first time in her life! Today, Emma is throwing up blood again (no pictures will be posted). Those that have followed for awhile know that Emma has done this before. She was diagnosed with gastritis about 6 months to a year ago. Her heart not functioning normally does contribute to this as well as GI motility issues. ER was discussed again today amongst the docs, but I talked with GI and it was agreed to watch and see. She has done this before and there is not much they can do in the hospital that I cant do at home, as frustrating as that may be. The GI doc told me I ran a very good home ICU! That made me very proud! ha ha. I had to laugh today (sarcastically) at the dichotomy of raising Emma. Tuesday, I posted about wonderful, amazing progress and then today....posting about something that hasnt happened in months and appears to be a digression in her medical progress. It is easy to get caught up in the ups and downs of Emmas journey. One minute I am on cloud nine and the next minute angry and confused. I have tried (still trying) to remain on an even road. Dont get too high or too low. This is a marathon and not a sprint. The emotional turmoil is exhausting. It is better to remain calm at all times. I was explaining to one doctor that the other doctor wishes for me to go to ER. I explained that I am torn about what to do because I dont want to disregard a doctors orders, but yet dont agree with them. The GI doctor told me that he understood. He said we all carry the burden of choosing what is best for Emma, not just you as the parent. We all want to not over react, but not ignore either. He understood me perfectly and I appreciated that more than I could convey! So is raising Emma really dichotomous? Or are they one in the same. The ups, the downs, the progress, the setbacks. They are all part of the journey. Tonight Kenny and I attended a fundraiser for Cystic Fibrosis. In a lot of ways, Emma acts just like a CF patient. I have a special connection with the moms of CF kiddos. Emma is on alot of the same medications and we do the same chest compressions. They had a young man with CF speak. I had the chance to meet him after, which was amazing! However, I really wanted to meet his mother. She got away before I could get to her, but I wanted to tell her how awesome she is! Her son was born before newborn screening. She knew something was wrong and kept pushing for answers. She did chest compressions before the vest was invented. She is trying to bop hard enough for a 14 year old boy because she knows it will make a huge difference in his health. I know her arms got tired and I know she wished life was different at times, but she kept going. I am sure if I talked with her she would say she wouldnt change a thing and would do it all again if she could. I also know she would take it all away from her son and put it on herself if she could. It was amazing to see her son standing before a crowd of 50 people sharing his story. He said, I am more than a CF patient. I am a son, a brother, and businessman, an Uncle, and a Christian. He was not going to let CF define him. Hmm.... So I say to myself, today is part of Emmas journey. It is a part of who she is just like Tuesday was also a part of her amazing journey. She is a daughter with an amazing spirit, she is a fighter, who has Turner syndrome, a congenital heart defect, and spits blood. I would not want to mess with her!
Posted on: Fri, 26 Sep 2014 03:10:16 +0000