Still Recovering from Postponement…Waiting for New Transplant Date.

I can’t quite say I have recovered yet, I like what Mary said, rubber band moments to see how far you can stretch before you snap. As I look at the blinking cursor on the screen I just have to shake my head because I wonder if I already have snapped. I can’t seem to get myself picked up this time. Gav seems like he is starting to get into another episode of his. He is vomiting up to five times a day now, mostly at night and in the morning. It never gets less scary to hear the low gurgle in the middle of the night, knowing that it’s about to come, that his tube is going to be dangling out his nostril and his throat, and that at the end of watching this horrific vomiting event, you are going to have to shove it right back down again. It just seems so unnecessarily cruel.

During the day he seems to do quite well, still interested and alert and ready for action. We went to the zoo the other day, since it seemed like our walls were closing in at home. He is just in love with the animals, pointing to one and then the other. Absolutely fascinated with the zoo train. He is starting to add some more words, up and duck and is trying hard to make the sound of a cow, although it comes out more as a mmm then a moo. They ended up not casting him, but put a small brace on his wrist for optimally four wks, but the ortho said, in reality it will prob be two that he will tolerate it for. Gav takes a special form of dislike to it and tries his hardest to rip it of, but thankfully is unsuccessful most of the time.

Both kids enjoyed spending time with Princess Julie”anna” (Lauren renamed her) aka cousin Julie who flew all the way up here to be by my side for the non existent transplant(ugh). I think she was sent here for another purpose, and that was to give me strength to keep fighting for Gavin when in reality, I wanted to stay holed up in bed. She pushed me to push for answers and take control of his situation, and I believe that he is better for it! There are no words that I can find that express how grateful we are to you for taking time for us!

Lauren is feeling a good rush. Apparently, she is under the assumption that she is quite wealthy, since she has eight coins now (it’s as if she won the lotto), she would like me to “buy her a farm already”. Thanks to her little neighbor friend (who is almost four) she is now obsessed with the idea of becoming a teenager. She is getting into high school musical and just loves the thought of anything that is considered “big teenager”. She has even gotten a new teenage walk that she likes to do and is sure to point out all the moments when she “looks like a teenager” (and she is sure that everyone thinks that she already is). I told her not to grow up so fast, but it is quite amusing. When you are young, you want to be older and when you are older you want to be younger. She also thinks our seven year old neighbor is an adult because he helps cut the grass, so that gives you some insight.

Thanks for the inspiring words, we find ourselves checking his sight often for inspiration…we are lucky, may we continue to be lucky and may we get a new transplant date ASAP so we can stay sane! As my mom would always quote us, “this too shall pass” and “that which does not kill you will make you stronger!”

Jill

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