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Tuesday, June 11, 2013

sammie dawn photography

Faith's Best Friend her nurse Amy!

Turning a Leaf

We have been through tough times since we last posted. But the bright side is that, that tough time is over and we are seeing some progress!!! First, Faith has started to be interested in crawling!! She wants to be where she wants to be. :) Let me tell you what I mean by crawling, army crawling, dragging her legs. Her legs aren't strong enough for her to be on all four. Crawling is wondering! She still needs help actually moving, we push her bottom VERY little and she is off!! This is a BIG milestone. People don't understand that you have to move her every inch she wants to go. She can't move on her own really at all. So I am VERY excited about this! In this process of learning how to crawl she has been learning to also spin on her bottom, which she is becoming a pro at!! Also getting in and out of sitting by herself. Lots of Physical Therapy! She is getting stronger everyday! Today 6.11.13 we made a trip up to Children's Mercy for a swallow study. This is once again a BIG milestone appointment. If she fails this there can't be another study done for 9-12months due to the radiation she is exposed to. Faith has been only getting her nutrition (milk) via her g-tube (feeding tube placed in her tummy) straight into her stomach. We started about a couple months ago intruding foods like applesauce, BBQ sauce and other foods at the constancy but she would FIGHT us and pucker her lips together like no ones business. Well that wasn't a good sign. So one day about a month later we started again she was a little into it but not as much as she needed to be (we were using a spoon to feed her). Then one day I came home from running around town and Faith's nurse, Amy said to me "well I was eating my chicken nuggets for lunch and dipping them in Ranch and Faith wouldn't stop watching me. So I asked her if she wanted some ranch and she said yes (using sign language) so I got her some ranch and DIDN'T use a spoon". With NO spoon she has been eating like a champ!! So today was the test and for the FIRST time since Faith was 3 months old she had a DRINK and it was with a REAL CUP!!! I couldn't even believe it and neither could Mic!! My Faith was using a CUP!!oh and taking a DRINK!!! Oh Lord you are so good to us!! Her feeding therapist said the test went much better then she thought it was going to go. That was a good sign! There are three different thickeners to use Honey, the thickest Syrup, the middle thickness and Nectar, the least thickness. She passed with using Nectar!! They also said Faith needs to work on learning how to get the food/drink in her month to the back with using her tongue every time. She did really well but not every time. The more she eats/drinks the better she will become!! Bring on summer and lots of DRINKS!!!! :) Going to try to update at least once a month. Thanks for reading!!