We arrived home at about 6:30 p.m. 😄😄😄. I cant describe how overjoyed I am to be at home with my family😍😍😍. Emily still has some residual issues to keep an eye on. Her diaphragm is paralyzed from surgery so it needs to be closely watched. Although not expected, it may require surgery to correct if it doesnt correct itself. Fluid is still showing around her lungs but she is on medication for that now. We follow up in 1 week to check progress. We will be seeing doctors weekly for awhile, but thats ok because we are home!!!! 😄 They do want her to continue physical therapy at home to reestablish her motor skills. Thats ok too, because we are home!!! 😄I have to admit I am experiencing a little anxiety being home after 18 days. No nurses to monitor her, no machines telling me if her heart is racing to fast, if her oxygen is to low or her respirations are high. No doctors around if anything goes wrong. Definitely anxious, but so happy to be home! To all Team Emily members, There are no words to describe the gratitude in my heart for each and everyone of you. This was the darkest time of my life, the most faith fighting experience I have ever been given. To everyone who hoped, wished, prayed, donated, offered a kind word, shared Emilys story, and your own personal stories, who fought for us, lifted us up and kept us going I thank you with everything I have. I was terrified, felt weak and alone when this journey began then a beautiful miracle happened! All of you happened! Everyone cheering me on, telling me how strong I am when I never thought so, and then because of you I actually started to believe it myself. I want you to know I read each and every one of your comments even though I dont always get the chance to respond. I see them and I feel stronger! The way this precious baby touched so many lives is an indescribable feeling. I have definitely felt alot of first time feelings along the way. I am truly and utterly humbled! If this experience has tought me anything its to never underestimate the power of a kind word, a small gesture that could shift someones entire day. Im so amazed by people I never even met. Before all of this, when I would see or hear stories of struggle I felt bad, I cared, but then I would move on with my day thinking I wish I could help but I cant. Little did I know how much I could. With just a few simple words or small act of kindness. Just saying I care. I will pay this forward, I will never turn a blind eye again. I can not express how much all of you mean to me! Thank you for showing me that the world isnt so bad after all, thank you for restoring my faith in humanity! You all have given me something I can never put into words. I will treasure all of you forever. Emily still has a long way to go for full recovery but I know SHE can do it! WE can do it! We make such a great team! I will pray this is the end for her, but thats the sad scary truth about CHD. Its always hanging in the balance. No cure, no fix, it will always be with her. The risks are always there that she may require future intervention. She will be on medications for awhile and monitoring for life. For now we will take this victory and enjoy every single second with our little bumblebee. According to aerodynamics the bumblebee can not fly, its wings are to big for its body and thats the reason why. The bumble bee doesnt know this fact and so it flies any way for all to see. Remember this when your losing faith or hope, gods proof the impossible can be We hope you will join us and spread awareness for CHD. February 7-14th is CHD awareness week. Maybe one day we can find a way to stop this, a way to fix this! We love you all! #TEAMEMILY ✊ 💞 The link below is a small video I made of Emilys journey. Emilys battle with CHD: youtu.be/ItaQSgnnnmM
Posted on: Sat, 24 Jan 2015 05:51:43 +0000
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