Never in a million years did i see our lives going in this direction. It has been full of mixed emotions. We are mentally and physically drained. I would never wish anyone to have to see their child go through the things we have had to watch as Tessa suffers through. I am so sad, sorry and frustrated for our babygirl. I just cant believe this has happened to our rock star. Our full of life and energy child. She has been so strong and brave during this entire journey, I don’t even know how she is doing it day in and day out. She still remains positive and always has a smile on her face when she isn’t in tons of pain. I have been holding my emotion for her sake and not showing her how truly scared we all are for her. She has a very long journey ahead of her. We all do.
Tess had her bath this morning without being sedated and it was not as bad as we thought it would be but she was very scared and said it was painful, (we are allowed in there with her for these). She handled it very well tho. She had to get a new feeding tube put in today (due to her other one being to high in her stomach) and was completely awake for it. It was the worst feeling to have to stand there and listen to her scream from behind the doors as they were doing it. Matt was able to be in with her, so that was a little peace of mind. My heart is breaking for her. I want her to feel better so badly. She is taking a much deserved nap right now, and doesn’t seem to be in too much pain. They will start her feeds back up again at 10pm and run them until 6am. Please pray we cleared up the issue of her getting so sick from that.
I hope everyone has a great time at the walk tomorrow for our girl. I will be here with Tessa, but Matt and Tyler will be there! Tyler is so looking forward to it. He has been such a trooper during all of this. I feel so terrible for him because he is use to me being home everyday. His world has also been flipped upside down. Thanks for the continued prayers, love and support you all have shown my entire family.