Macy

Macy

Friday, July 15, 2011

Patience isn't always a virtue!

I've never been a very patient person.  This stems all the way back to the day I was born...when I jumped shipped before my mom even made it to the delivery room.  I am sure there have been many times in life that this characteristic has hurt me; but there are more important times that this has helped.  Most importantly with Macy and her disease.  My impatience has allowed her to be diagnosed with this disease.  Ever since she was born I have been going crazy researching all over the place what could have caused her "floppy thumb" and kidney issues.  I have this horrible urge to always do things myself.  I have to "know" everything myself; just incase someone else has missed something.  So I didn't rely on her Doctors or other people to find things out for me; I did it all myself.  After all, I don't have time to wait for someone else to get around to researching things on my child (there's that pesky impatience again!!)  I am sure this can be very annoying to Macy's Dr.'s but if it wasn't for my obsessed researching regarding this we may not know that she has this disease.  


I'm not saying everyone should be impatient; but I do think it is so important that parents are empowered to educate themselves on their children's health (and on their own).  Yes, Doctors are smart people; but that doesn't mean you have to sit in the sidelines.  You have to be your child's advocate; because if your not; who will be?  I encourage parents to speak up, and ask questions.  Lots and lots of questions.


You never know; what you find out could be the missing piece!


On a different note; Macy is doing pretty well in her recovery still.  However, she is not tolerating the feeds as well as she was in the beginning.  Her bolus feeds during the day are going okay; but he overnight feed she has been waking up crying a lot.  I noticed she is also refluxing quite a bit during the night from having food in her belly all the time.  Last night I set the machine to do interval feeds instead of continuous but that didn't seem to help.  I ended up unplugging her at 3am and let her be free of the feeding the rest of the night.  We do have an appt. with a GI Specialist on the 27th so we will look into what we can do to help her reflux.  I am hoping we don't have to end up getting the Nissen surgery; but I am afraid that may have to happen.  If she wasn't so prone to esophagus cancer I probably wouldn't worry too much.  But she is; so we need to find a way to reduce the reflux.  


However, on a good note; she did pretty well at her feeding therapy appt. yesterday.  It was quite the journey getting there though. I forgot about former first lady Betty Ford's funeral, and all of downtown was blocked off.  It was not easy finding a way to the hospital.  Then when we got there 15 min. late at 3:15pm.  They said her appt. was actually at 11am that morning.....I must have written it down wrong....UGH!  Luckily her therapist was kind enough to see her anyways; whew!  She did really good though, and today I even added some squash to her banana/plum/grape puree and she ate it fine!  I am hoping I can continue to sneak veggies in there!


take care,

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