Wednesday, January 15, 2014

Looking Good

Lucy's new feeding tube is looking good in more ways than one!
(That is not milk running down the side of her belly in the picture, but as I look at it, it kind of looks like that, but it's not!)

Instead of using disposable "drainage sponges" every day that I have to cut and use tape with, I ordered Lu a batch of adorable reusable covers that we just wash and use over and over. I bought these from a store on Etsy called Feedie Friends ( She had many options of sets of similar patterns, but she also had listings for choosing your own fabric, like a custom order, so here is what I chose for Lu:

It was fun to choose things that she loves, so at least there can be one little fun part about the process of "eating" with her feeding tube. We also travelled back to the Bronx on Monday for a follow up appointment with Dr. Loizides, her GI doctor. He said everything looked great. When Lu checked in at the hospital the day before the surgery, she weighed in at 28 pounds 9 oz. Monday (and for a few days before) she weighed a little over 31 pounds! That puts her in the 30th percentile! Chad and I have been noticing a big difference in her over these first two weeks, just from having enough nourishment in her consistently. She has been more vocal and has been saying, "Dad" a lot the past few days, with her voice. She is more alert, less irritable, and laughing and giggling a lot more!

Back in November my sister and my Mom organized a spaghetti dinner for Lu. Our main goal was to raise money to build a ramp for the house, but the money that was raised will also be so incredibly helpful as there is just always something Lu needs, or somewhere we need to go. It is such a relief to know we just have some extra money set aside for say, when we need to spend three days in the hospital in NY and then drive back two weeks later. So, we are so thankful to everyone who was involved as the financial part has at least been less stressful for us as we have been trying to figure out this new aspect to Lu's care. 

So here again is the picture from  January 1st,

And here is a picture from January 12. It is a very small difference, but Chad and I definitely feel her cheeks might be a teeny bit fuller. For the first two years of her life, Lu was always so plump and healthy looking, but in the past 6-8 months she has become increasingly fragile looking, and it makes us so happy to see a little bit of her old self coming back. 

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