I had to hold back and wait to write for some time. The start of medications was a very overwhelming process. I was previously very upset about all of this, and just couldn't handle blogging.
I totally agree with Fidelity, her medications were "gross" and she didn't want to take them, nor does she even understand why she has to. Her world has forever changed and she doesn't understand it at all. What a trooper though. We went through a variety of foods and drinks to find the perfect thing to hide medicine in. We knew that if she is not compliant, then we may have to look into getting a g-tube for all of her medications. We got to a point where we were tired of fighting with her and with her belly being so full of medicine mixtures she would often throw up.
So here we are now, it was not the most exciting process but we did force Fidelity to learn how to swallow her pills. She got to a point where she would flat out refuse, or she would prolong the agony taking up to an hour or more just to take 3 medications in a mix or oral syringe. Well, it had to stop. I cried a lot, she did too, but we made things happenn. She still fusses, but is doing SO much better. She is now able to take 5 out of her 8 medications, in pill form. It really is tough love some times, and she is presented with the option of "okay, the hard way or the easy way?" Sometimes she still chooses the hard way, but once it is all done with she carries on as if nothing happened.
Fast forward another month and I would say just within the last week and one-half, she is starting to keep her medications down. It was getting very difficult to plan to go anywhere due to the unpredictable sick episodes she would have. One moment she would be playing happily and the next screaming in agony due to her stomach hurting and yelling to take her to the bathroom where she could be sick with minimal mess.
She is doing very well and it is my hope that we can begin to get out a bit more. I would love her to meet other children and be able to play, laugh, and run around. I never thought I would see it, but I feel the isolation has really brought her down and broken her spirit some. I simply want to get her out and live like any other child. I often think of her and refer to her as the "sunshine" in the house. I want her outdoors where her infectious rays of light can touch others.
