Time keeps going and I'm not sure what we do :) With school, work, soccer and Brooke, our days seemed filled. We are so blessed to have an awesome babysitter 2 days a week for the school year. I can go to work and have a somewhat set schedule. And I don't feel like I'm bugging our parents CONSTANTLY!! Not to mention, I think the twins like Miss Dawn more than me :) She is much more fun!
Soccer started on Saturday. Want to see a crabby Shelly? (more crabby than normal :) put me in the rain with twins! The other parents seemed ok with it, not sure what my problem was. I'm, however, am going to go out and by an umbrella that is off limits from my children. It seems every umbrella we have gets broken, hmmmmm??? But Megan and Ashley played soccer and had fun. So, it was worth it.
On to Miss Brooke. I'll back up my thoughts to try and give you the whole picture. 2 weeks ago when this whole port issue started with bulging veins and swollen cheeks I said to the MD and PA, "I am not doing blood thinners." It was a thought that was on my mind and I told them. They smiled and said, "we were thinking Lovenox." That's a blood thinner that is giving subq (under the skin/a shot) 2 times a day. I smiled at them and said "no thanks." (notice how polite we all are). Well after all the testing was done Dr Duffner called me on Friday. The CT showed a questionable blood clot. She still has the narrowing of the vein. They aren't sure if it is scar tissue or a blood clot. So they want to start her on, you guessed it, Lovenox. I already told them no, they must have forgotten that. I don't wait to give my daughter a blood thinner when she's ALWAYS falling, for a questionable blood clot we don't even know that is there. So I called Steve. He graciously listens and says, "you better call my sister." (pawn me off) So I try to leave Lisa a message and end up crying on her voicemail. (WOW what a head case I am). Lisa calls me back and talks sense into me. A slight risk of bleeding OR a bigger risk of a stroke. After talking to Lisa the MD also called me back to "persuade" me. OK, we give Lovenox. It was actually a much longer conversation, but I'll save you all that. Lisa wishes she could have been saved :) However I am so glad God put such awesome, rational people in my life. I've been reminded how hard change is at any age. We get into our routines and we don't want to change them. I was also reminded by someone I have looked up to forever, to take off the mom hat and put on the nurse hat! As much as I want to be a mom, at times I need to be a nurse. Stop rationalizing things and feeling bad, instead just do what needs to be done and have some common sense. Do I enjoy giving my daughter 2 pokes a day? Nope! I prefer not to, but I'd rather have her with us, so I will. I think the funniest thing the MD said was "she'll bleed easier so make sure and protect her from falling." HAHAHA! SHE'S 2! The Great Healer will protect her. No worries about that. We will do the task at hand and let Him take care of the rest.
Tuesday she has an MD appt and blood draws. They did draw T cells last week. Not sure if they will be back yet, but with everything going on, not sure I care :) My brain is filled so if we have to wait another week for results I am ok with that.
We'll keep ya posted. (as for feeding, we are still doing tube feedings. She is taking baby steps towards being interested in food. We keep giving her food and will continue. Have I turned off the tube feeding for 2+ days? Nope. Not up for the challenge just yet :)
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