Today was a good day.
I was finally well-rested (slept for 10 hours!!) because Brennan “made” me go home to sleep (like I would have said no). So thankful.
I got to the hospital at 9am and Brennan went home soon after that to shower and sleep, since he didn’t sleep well at the hospital.
We both learned how to feed Tori through the G-Tube (also called a Mickey Button). We learned to vent the tube if she has gas in order to burp her that way, and many other tricks.
She slept really well all day and it wasn’t even from pain meds!
The feeds slowly increased all day to ensure that she would tolerate them well.
At 9pm we fed her 75mL by gravity (as opposed to a pump) and she did well! We signed our discharge papers and headed home!
Pray that she continues to heal well from the surgery and that she will be comfortable. And that she will sleep well. 😉
Even So, Joy 
Praying for Tori…she looks good, and I think you’ll be so glad you did this! We fought it for 3 years before giving in, and we wondered why we’d waited so long!
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Great news! Glad today went well. Try to get some rest tonight.
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So happy everything went well. Love to you all
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I have to tell you this: You do not know me, I am an ER nurse who had the pleasure of working with Aaron Kelley, and I follow his blog. On his blog, he had a prayer request for you all and a link to your story and I have been following it ever since. When I sit down at night to read my email, I actually can’t wait to open it up so I can see if there’s any new posts to read from you!! I have refrained from leaving any comments because you do not know me, but I can’t refrain anymore. I am so touched by your entire story and “well up” with tears when I look at all the pictures of your beautiful baby girl, Tori! She’s so precious and adorable!! You, your husband, Tori, and your family are in my thoughts and prayers every single day. You are a strong woman, and you are doing a wonderful job being a mother to your little bundle of joy. I hope God hears all the prayers and heals her completely. My family and I will continue to pray for you all. And thank you for all the wonderful updates!!
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Thank you!!
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your all are in my prayers everyday god bless you
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Lesa! I haven’t been on blogger in well over a year and didn’t know this was going on until today. A close friend of mine has a niece with Krabbe and I have learned a ton about it in the past year, so when I saw the diagnosis on here I immediately knew what you were talking about. Glad the surgery went well. I will keep your little family in my prayers. It’s really beautiful to see how much joy you all have in each other. ❤
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so happy that she is doing well. I continue to pray for her complete healing.
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