KAIDENCE PASSED PART OF HER SWALLOW TEST!

Well, today was the big firs appt. I feel a little tired from packing up all of the equipment and Kaidence and then as I was leaving and trying to get Kaidence in the car with all of her equipment still hooked to her I noticed that the monster van next to me was parked only inches away from my car. Kinda made me a little grumpy. Kaidence did great with her big long day today. We also had her ENT appt. today as well and guess what! She passed her FEES study to a certain extent. Not perfect but MUCH better than before when she could not even swallow at all. She still has a little swelling so I will only suction when it is defiantly needed. Speech will start coming to our home and working with her. All of her liquids have to be thickened to the consistency of honey. She was so excited when they showed her a bottle with something in it. She also liked the chicken dinner but it was a little to sticky for her. She has to relearn swallowing and the process of eating and I think that with time things will move along. In fact today after they gave her food, I gave her some nasty Nystatin that goes in her mouth and I heard her actually swallow instead of spitting it out. After her appts I went back to our old spot in to PICU to pick up a poster I had forgotten. I met some of her nurses at the back door because there was no way I was walking through that unit with all of the sick patients. It was fun to see our friends even if it hasn't even been a week. Even though we have cardiology twice a week, we probably won't venture up there again until late spring because I am too scared and don't want to take any chances. kaidence of course wore her little mask and she is getting better at keeping it on. Whenever she decides to rip it off I throw a blanket over her stroller. Gotta keep those germs away. Especially that RSV. It makes me very nervous taking her anywhere, but supposedly the mask will help protect her when we go to the hospital as long as people aren't' smothering her. I am a germ freak and carry my own avagard sanitizer wherever I go. Things like this make me paranoid and now I will worry for days if she has been exposed to anything. I brought her home and changed her clothes and washed her mask.
I love having all of my family home together at night. It feels right. kaidence loves it as well and settles in every night in her cozy little bed. Her favorite toys however are her stethoscope, hospital badge & pulse ox lead. She will pick those toys off a tray full of others. I have a hard time keeping her oxygen on at night. It is always in her eyes or mouth. I think she has finally fallen asleep and so I am going to go and hook her back up to everything. I have to be very, very sneaky!