Happy Valentine's Day to everyone!Isn't this so fun!? There are hearts everywhere! I love it! I love that the entire world is celebrating this holiday with the symbol of a heart. I can't help, but think that we as heart moms and heart families might feel this holiday at a deeper level. Today has actually been a little emotional for me. I keep telling myself.. this is silly, it's only Valentine's Day. But, I will never take the meaning of a heart for granted.
** I wanted to post our Valentine Card that we sent out, but I seem to be having trouble. (ggrr!) I'll recruit some help and add it tomorrow. (gee whiz!) If I have your address, yours is coming in the mail.
Today was also fun as we delivered Valentine cookies and chocolates to our friends. Valentine's Day has definitely become my new favorite holiday!
Here is a little update on Maddie: Madison has continued to do absolutely amazing! At her last appointment (appointment #12), Dr. Everitt kept watching her. As she was watching her, I could tell that she was thinking about something. After a few seconds, Dr. Everitt started laughing and said, "I don't mean to stare. It's just that Madison is doing so well and everything has turned out so perfect. It reminds me of why I do what I do everyday." She was right. Everything has turned out so perfect with Madison. We are so blessed and so happy! She has also continued to gain weight. Maddie now weighs 19lbs. 3 oz. and Dr. Everitt DC'd one med. We are down to 12 meds per day.
(I'm sure our pharamacist will be bummed that his work load is decreasing.. )
So here are some things that we are struggling with.. (and I'm trying not to worry). About three days after this appontment, Madison's mood has changed. She has become whiny and extremely needy. She wants to be held all of the time, but doesn't seem comfortable when I am holding her. She doesn't have any symptoms that she might be getting sick. This behavior isn't like her at all. It does worry me because this can be a 'heart failure' symptom, BUT she has a perfect heart. So, I should be able to check heart failure off my list and move on. But I can't. Mark and I go through our 'possible rejection' checklist numberous times each day. It's driving me crazy! This past week, I have spent all day with a stethoscope around my neck.
A couple days ago, I did call Emily (our transplant coordinator) and explained Madison's symptoms to her. Emily was a little concerned. She gave me a couple other symptoms to watch for and asked that I keep in touch with her. I hope that this is just a phase that Maddie is going through. Heck, maybe she is teething?? Something so simple that doesn't cross the mind of a heart mom.. instead we chase our babies around with stethoscopes. Our poor kiddos.
To make things worse, today is Sunday and Emily called me. What? Who gets a random phone call from their doctor on a Sunday? I don't think Primary Children's should be making phone calls on Sunday's... (isn't that a rule somewhere..) It only worries the parents! Anyway... Emily was calling because Dr. Everitt would like to see Madison on Tuesday morning. (Because of the holiday tomorrow, Madison was going to go 10 days between appointments.) I think because of my phone call to Emily then Dr. Everitt wants to see her sooner. Also, Madison's Prograf level is still not at the correct level. We have increased it at every appointment. Anyone else have Prograf level issues? Should I be concerned?
Take Care. I will post pictures tomorrow.