Clarity

I feel I need to clarify a few things from last nights post. First, I hope I do not sound like I come off as I complain a lot through these posts. Yes, I do use them to vent from time to time, but I mostly want to share with you all how I feel. Frankly, I have a mixed bag of emotions I carry around with me daily. Some days I am angry, some sad, some solemn, some peaceful, some accepting, some confused and frustrated and today I have CLARITY. First, I want to give a HUGE SHOUT OUT to all of the wonderful Riley nurses that have came into our lives and have care and treated Sophie like one of their own. Those nurses are Sophie's best pals and those nurses hold a special place in the hearts of her parents as well. It is through talking to these nurses that I do find hope and clarity on the bad days. Most of my frustration comes from perhaps a lack of communication between parties and not having all of my WHY questions answered. These doctors are saving my daughters life and for that I will always be eternity grateful! I still have questions and hopefully the answers will come. Tonight, on my drive home, I was thinking (like always) and some things began more clear. Even though we may not know WHY Sophia still needs vent support. We are obviously not going to just take it away. She has shown her own signs that it is needed. As long as she needs it, it will be there to help and support her growth and breathing comforts. We will always give her what she needs. It is just disappointing to hear one thing, see another, and then hear it could even be there for a long time. We are still arranging a care conference to help with the communication and to make the transition into the new unit better.

Sophie was a bit grumpy today. She was fighting her naps. I finally got her into a good sleep at 730 and is still snoozing good now. She was a sleepy bug today. They are also trying her on the home vent again. She is still too small but we keep trying. On my drive home tonight, I could not help but to get a lil teary eyed thinking of the changes we will be making at home. Everyone knows when you plan for a baby, there are always big changes at home but now all of the initial planning has to be modified again. Just the little things like, having to have a ramp to help her wagon get in and out of the house. Perhaps even moving homes to better suit her needs.Change is good. I am a teacher, I am use to adapting on the fly. It is just when you have to put these plans into reality it becomes a little emotional. Whatever changes are in store, I just want that little girl home. Home will make all the reality, REAL.... and good!