Wednesday, November 2, 2011

"Carpe Diem" is hard

So November is here...and we're onto the cold weather!  Not sure if I am ready for the cold and snow, and freezing rain; but it's coming whether I am ready or not, I guess (tear).  We are trying to enjoy these last few days of decent weather we have left.  Macy and I spent a nice day out on the town today doing some after Halloween shopping.  I bought her 3 costumes for next year.  Maybe she'll like atleast 1 when the time comes (I hope).  One is 'Little Red Riding Hood' which is sooo cute; definitely my favorite.  Another is a Pumpkin Witch, and the third is a Pirate.  I am sure she will look adorable in whichever she decides, and if not she can atleast play dress-up with them.  She was a cow this cute!
Macy in her 'cow' costume

It's so cute how she always crosses her legs...what a little lady!

Macy is continuing to eat well.  Her volume of food is going up and up each week it seems.  May I dare say she is pretty much to the point of eating the "normal" amount for her age...close.  She is still only eating foods with really little chunks in it though.  I tried a Gerber Graduate Toddler meal thingy.  It has big chunks...well, it's all chunks and that didn't go over too well.  She's not ready for that yet.  But she does like big crunchy things like: tortilla chips, veggie sticks, and graham crackers.  And she wants a bite of anything on our plates so that is good.  The only other thing we need to work on is her liquid volume.  She only drinks about 2 oz. a day by mouth.  I am not sure how to get her to drink more.  She doesn't seem very interested at all.  So until we get that liquid volume up; she will continue as a tubie!

Next Monday is Macy's hand appointment.  I plan to speak to her Dr. about her other hand surgery, and hopefully it will be before Dec. 31st due to insurance reasons. (  I do have a feeling though that she is going to have to have another surgery on her left hand as well.  Her range of motion with her new thumb is very limited; and she holds it withdrawn into the palm of her hand all the time so she does not pinch with it or open it up at all.  We knew this may be a possibility, but I guess I was hoping she wouldn't need it.  I hate having to put her through more surgeries.  Poor girl.  :(

It seems like Macy has mostly gotten over her cold she has had for about 10 days.  It was pretty mild for the most part so that is good.  Her being sick makes me nervous...I don't want it to jump start anything in her like her bone marrow failing so I am glad she is starting to feel better.  And speaking of better; she has been getting a lot better at pulling herself up into a standing position.  I found a really good motivator for her yesterday...grape nerds.  I put one in her mouth last night and she loved it (not that I like her eating sugar...but I guess a little bit is okay).  I just put the box of nerds on the couch and she pulled herself up like it was no big thing.  Now she is a standing machine.  
Macy's "sour" face after trying her first grape nerd.

What happened after we took the nerds away from her...not happy!

So anyway, one of the things I think about ALL the time now; ever since Macy's diagnosis is what can we do to enjoy each day.  To make sure we make each day special and live to it's fullest.  I have found that it is a little harder than I thought.  It's a simple concept "carpe diem"---seize the day.  But then it makes me think we should be doing more. Traveling more, going more places, doing more things???  I don't do we know if we are doing all the things we really want to do?  Going the places we really want to go?  Living where we want to live?  There are so many choices.  How do you know if you are living each day to the fullest?  Wow, now I got my brain in a twist.  Maybe it doesn't need to be so complicated.  Maybe it's just as simple as 'live, laugh, love'?
Macy hanging out under the table
What a cute picture of our "little stinkie".  I don't remember how she got that nickname, but I am thinking we probably should try to come up with something else.  Some how I have a feeling she's not going to like being called "stinkie" when she gets older. ha ha ha.  Anyways, love her so much!

As always, praying for a cure: Fanconi Anemia awareness!

take care,

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