Tuesday, July 14, 2015

Tiny P

Two weeks ago I decided that we all, but especially tiny P, needed a little break from doctors... we were at the nephrologist for a check up, and we are just starting to figure out what kind of kidney issues our girl has. They decided that they needed blood work, and right then I decided that we were done. Not done, done, but done for a little while. So I decided that tiny P was going to get a two week break from doctors. I cancelled everything, and we have been hanging out at home, not going to any appointments!


She needed this time so much. And now, it has been two weeks. Yes, the blood work they needed was important, and it will still be important this morning when we go to get it done. But a little break has been just what our girl needed...hopefully it has given her little veins some time to heal, and they will be able to get a good draw!


Today also marks one month since our girl's heart cath...one month that she has been out of the hospital! We are hoping for the whole Summer, wouldn't that be great for her?!

It feels so precarious right now as we try to keep our girl healthy and strong. She has a very hard time keeping her potassium down, though we have tried just about everything. She still throws it up.
But she is eating... not great, and we have to work at it, and it takes forever, but she is getting a little nutrition. Despite the eating, tiny P is still losing weight. She is so thin, and clothes that were getting too small for her in January are now too big! Our two year old has dropped almost two sizes. She is so thin and frail right now that it just breaks my heart. Her little system is just working overtime because of her sick heart, and that makes her metabolism much higher.


I am in touch with her GI and cardiologist constantly, and we are trying to stay on top of tiny P's health. We need her to be strong, and we need her to gain weight!
And now our two week break is over, and we are back to our crazy schedule of specialists and lab visits...



2 comments:

noname said...

I know that children with cystic fibrosis have a hard time getting enough nutrients and packing on the weight. Perhaps there is a parent group on Facebook that could give you some advice for feeding little Paisley.

Musings from Kim K. said...

Continued prayers for your sweet little one and your entire family!