Sunday, October 17, 2010

All About Lily

It seems whenever I decide to update our blog I can never figure out how to start, even though I have so much to say.  I thought I would dedicate this post to Lily since she will be hitting some pretty big milestones this month; turning 18 months and being 1 yr post-op!

We'll start with her cardiology check up in Iowa City.  When we originally scheduled he cardiology appointment we purposely scheduled it on the same day with an ENT Dr.  Lily has had so many ear infections since last September we decided to have tubes put in and see if that works.  Because we had to fit all of these appointment in in one day it was decided that Lily would have an un-sedated echo.  Many of you have seen Lily in action and she doesn't sit still for very long.  The thought of having an un-sedated echo just didn't sit well with me.  I kept thinking if she didn't lay still they wouldn't get good pictures and I wanted to make sure that everything was checked over really well and we didn't miss anything.  Fortunately for us she was amazing.  I couldn't believe how well she laid there on the bed watching Sesame Street and before we knew it, she was fast asleep.  Actually the whole day she was just incredible.  The chest x-rays have always caused her tears and fits.  They lay her on a long table and put some weights on her arms and legs to hold them down...and if that isn't bad enough, I have to move behind the wall to avoid the radiation.  She surprised the heck out of my by just laying there and letting the techs get all the pics they needed.  Lastly, we had the EKG done and again, she was just perfect.  Overall, I couldn't have asked for her to behave any better.  It is almost like she knew what had to be done!  Dr Reinking came back with all the results of the tests, etc and everything looks just great for her.  Her heart function is really good and her oxygen saturations are holding in the 80's...all good news!!  We don't have to go back for another 6 months...yippee!!

The following day we were in Iowa City to her Lily's tubes out in her ears.  It was an early morning leaving the house at 4:00 am so we could be there at 6:00 am.  I thought like in the past we would be able to walk back into the operating room and hold her as they put her to sleep.  However, they decided to give her a little something to relax her and before you know it she was in the arms of the Dr and he took her back into the operating room.  Because of Lily's heart condition we had to make sure that we had an anesthesiologist who works with pediatric heart patients and we had to be in the main operating room in case anything should happen during surgery.  Fortunately all went smoothly and in less than 30 minutes they told us everything went great and she was being moved to the recovery room.  By 9:00 she had recovered enough from the anesthesia that we were able to leave.  So far things have been great with her ears.  We go back to the ENT in the beginning of November to have her tubes checked...wish us luck!



In other news we have begun the fun task of potty-training Lily.  When we first introduced her to the potty I would sit down with her in the morning and we would sing songs while she was sitting on the potty.  We are in a pretty consistent routine now of getting up in the morning, enjoying a little cuddle time and then we head to the potty.  The first thing she does when she sits on the potty are the actions to the Itsy Bitsy Spider.  I guess that is her favorite potty time song.  Something else that we have used during our potty time routine is sign language.  Of course we use potty, but also the signs for more, all done, wash and good job.  I am amazed how quickly she picked up on the signs for our potty time routine.

Lily has been in an actual daycare center now since school started and she has adjusted really well.  She is beginning to be very verbal, in fact, I would say she has become quite sassy!  She is a girl who definitely knows what she wants and when she doesn't get it...boy, you'd better watch out!  I think part of that attitude is probably our fault since we tend to spoil her a bit.  She's been through a lot so she deserves it!!

Something we are not looking forward to is cold and flu season.  We are waiting to her from Lily's pediatrician to see if she will be able to receive the RSV vaccinations again this year.  They don't think it should be a problem but you just never know with insurance companies.  Pray that these are approved for Lily because getting RSV would take a huge toll on Lily.

We are looking forward to Halloween this year.  Last year we celebrated Halloween with Lily in the PICU.  She has her bi-directional glenn surgery on October 29th of last year so we are just about to the one-year anniversary of that.  WOW!  A year already!  This year we are heading over to my brother and sister-in-law's house for chili on Halloween night and then taking the girls trick or treating.  I can't wait to see my little witch and black cat all dressed up!

Hoping everyone is having a great fall so far!  I will leave off with a few cute pics of our little Lily Bug!



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