Skin And Bones…

Today tiny P and I went in to Children’s for some tests…

If you are following tiny P’s Facebook page, you know that today she was scheduled to be admitted to the hospital for the week to have an NG feeding tube placed.

This week while we were on vacation we made a concerted effort to add extra calories wherever we could in an attempt to stall and avoid a feeding tube. We are not against a tube for our girl, and we are worried about the amount of weight she has lost. She is very thin, and we have been concerned for some time as she continues to drop weight.

But today, her weight was up! She has been puffy, so a bit of it was likely fluid, but we are happy to put off the feeding tube for however long she can manage it. We appreciate everyone’s weight adding ideas and help, we have tried everything, and our picky little girl was able to eat quite a bit of it.

Today tiny P had her last round of blood work done for her transplant candidacy, she had an echo, EKG, x-rays, and sonogram. She was a champ through the whole day, and I am always so proud of how strong she is. We will go back every week to have her weighed, and we are packed and prepared to be admitted at any time, but for now, our baby is home!


  1. Musings from Kim K. on August 18, 2015 at 10:59 am

    Continued prayers for P. So glad you can be home a bit longer.

  2. Always wear your tiara on August 18, 2015 at 11:17 am

    wonderful news. So happy for you. It is so so hard to get them to gain.i spent 2 yrs working with a nutritionist following Rosies heart surgery as she continued to lose weight.

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