her strength!

today is a good day for kenzie a harder day for mommy... ahhh I'm so tired of this roller coaster. i am so pleased with her nurse and rt today. they are awesome. she loves them to! she is feeling better, more comfortable and happy.
last night ryan and i were asked a question by the doc. "if kenzie's heart was to stop or she was to extubate herself, would we ask they DNR (do not resuscitate)"
among being totally shocked at that question i thought i don't think any parent should be asked that because what other response would you say other than- umm hell yeah, that's my child, save her! how are you suppose to even think about that and really think about what you would want them to do in a matter of a few minutes? i know we have some horrible choices to make and our choices are very similar to that question but when you're faced with a question like that it really throws you off. well it did me. i just thought right now we have a choice and its up to us when makenzie will return to heaven, whether its sooner or later. if something unexpected happened it would be out of our power, i still haven't decided if that would be a good thing or bad thing. the only thing i know is before makenzie returns to God, ryan and i want to be the ones who hand her over. we want her to go in peace, in a room full of love and family. we don't want her to have a shadow of a doubt how much we love her when she leaves us.

these choices are really unfair and i have yet to understand why we have to make it. we are dealing with it and we are making this decision based on what we feel will be best for our family and what makenzie really wants. we talk to her and i feel she is talking to us through her eyes and soul. she is such an amazing little girl. i don't know how we got so blessed to be her parents. if she was to go tomorrow, i would thank the Lord from the bottom of my heart for giving us the most amazing gift we could ever dream of. until you become a parent you will never understand a love like this, until you are faced with your child's life in your hands you will never understand how much you really love your child. its an amazing feeling to know you will give anything and everything for them. i have always said that but the emotions you go through when you in the middle of it are imaginable. makenzie is a real life angel. she was sent to this earth to make this place a little better. her strength inspires me everyday. something as simple as breathing is not even a thought in my mind but to her, she spend the first few months of her life fighting to just do that.

last Tuesday before we got the SMARD news they were planning on extubating makenzie. the night before i sat by her bed dreaming about holding her, taking her on walks, bringing her home and letting her have freedom. that morning was a happy morning, i was still planning on being tubeless at 11 am! we watched the clock, i kept telling her just a few more minutes... we were both excited. some little things came up which delayed it to after 12. a doctor, an RT and her nurse came in the room to make sure things went okay. they put oxygen in her nose the same moment they took her tube out. i was holding her hand and stroking her face. immediately she was in distress. she was arching her back, throwing her body all over, gasping for air. they turned her oxygen up to 100. she was still in the low 90's which wasn't bad but you could see she couldn't catch a breath. she got pale and started to foam at her mouth. i was trying to calm her down and kept asking her to breath, just settle down and breath. she wouldn't take her eyes off mine. i could see in her eyes she was begging me to help her. i will never forget her eyes. it felt like it was hours but it was only minutes before they told me she wasn't strong enough and they needed to re-intubate her. ahhh my heart was broken but i just told her how proud i was of her and that she did an amazing job. i went out while they sedated her and put the tube back down her throat. it was the next day they did an ultra sound of her diaphragm and found it to be paralyzed. it was not always paralyzed, that's what SMA does, when you don't use it, you lose it. she was probably close to losing it anyway before she was intubated. she was trying so hard everyday. she is so strong and i am so proud of her.

** this is an example of how amazing this little girl is. her joy this day was these balloons. a special friend gave them to her, thank you! she loves them... it keeps her mind off some of the hard moments and makes her happy. I think she will be showered with balloons in heaven**