Unfortunatley, after a swim last night his NG tube came out. Just like that. For the first time! Just came right out. The family all got into there positions. Gary on Uncle Bill's lap, Daddy holds hands and keeps his head still. The kids behind us watching. Oh yes, we can't forget Auntie Alyssa. Runs and hides in a corner, rocking back and forth in a fetal position till it is all over. I don't blame her. But it went in, at first I didn't think it was going to go, but gently pushing so it finds it way down. He looked so much better with it out I was tempted to leave it out! Everyone was having anxiety about getting it back in so we didn't waste too much time. We needed to get it over with. Our next overnight infusion is on Friday. We have our appointment at 4. Hopefully this will be our last weekly infusion. There is a meeting on Thursday to discuss what will be done from this point as far as where to go with treatment from this point.
OK so as I sit at work crying you are such an inspiration to me! I am so excited about the shirts! Let me know and I will be so glad to help sell them. I thought a treatment was bad yesterday I can't imagine the NV tube. Kya literally trembles when she goes into the room to be accessed. Once the blood draw is over she is fine, but until they get all of that done she trembles and begs for her dada. I am so excited about Gary's progress. What sunblock are you using on him when he is outside at the pool? Just trying to see if there is something better out there. The sun effects Kya a whole lot. Which is not a good thing with Oklahoma summers! I will let you know as soon as I get her numbers what our plan is. Also, can you send me your mailing address. We need it!
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