Going Home and Dance Mom

     I apologize for the break in the blogs.  I last blogged on Thursday and Friday I went home with Maddie to go with her to her first dance competition.  So I have been without the laptop for the last several days. 
    
     Friday Bailey's INR was 2.1 so we were getting closer but we all projected Sunday or Monday before we were in therapeutic range.  It is funny how God works.  One of the things about working with doctors is that a lot of time they are very intimidating and often times you blindly trust them because they are so much more educated than you.  When Dustin and I had Bailey, I was 19 and he was 21.  We were barely old enough to take care of ourselves so whenever a doctor said something, we would have never thought to question it.  14 years later, some of that intimidation has worn off.  See, Dustin and I know something that none of these doctors know.  We know our daughter.  We know what is normal for her and we know what kind of kid she is.  Bailey is not one who likes the attention of the hospital.  She is not a kid who fakes things for attention and she is not a complainer.  You could ask any PE coach Bailey has ever had.  They will all tell you she never complains about what is asked of her and you will definitely never hear her use her heart as an excuse.  I say all that because in this last visit it felt like when the doctors didn't find what they would expect to cause Bailey's symptoms, they were quick to say Bailey's symptoms were more likely caused by stress.  We all agreed that once Bailey got in the hospital, she was under a great deal of stress but not before.  Anyways, I say all of this to get to the point that God really used this visit to show us to listen to Bailey and also to give Bailey the opportunity to gain her own voice.  Friday we got the opportunity to watch our girl turn into this well-spoken, brave young lady.  Bailey addressed a team of about 7 doctors at one time to tell them what she thought, what tests she wanted ran and to express to them that she knows they are very smart but only she really knows what it feels like to experience what is happening inside her own body.  And guess what?  They listened to her!!  This was important because it gave Bailey some control in her own health care which is so important in chronically ill teenagers.  They often feel like they have no control and all decisions are made without them. 
    
     So as many of you know by now, we got released on Saturday!!  Bailey's INR was 2.5 and the doctors said it was time to get out!!  It was a beautiful day to get out and we were home by 4 o'clock!!  We even had some visitors right as we were leaving that brightened Bailey's day even more!!  There is something about a group of 8th grade girls that make her day happier than any other visitor could provide:)

Getting on the elevator to go home!!

     I know this blog is about Bailey's heart, but I would like to give some attention to Maddie.  While I was at the hospital I met a mom of a 14 year old quadriplegic on a ventilator.  Her daughter was in a car accident when she was 3 and has needed around the clock care ever since.  We started by talking about our girls but our conversation quickly moved to our other children.  Often times when you have a chronically ill child, your other child gets pushed aside really out of necessity.  I know it must be done, but it is hard to explain and reason with your healthy child.  It was nice to talk with another mom who experiences the guilt that comes with this.  I am so blessed to have so many great people in my life who love Maddie and want to help with her, but it is hard not to worry about her feeling somewhat abandoned by her mom and dad.  Maddie has been a trooper, but I can't imagine what it is like to have your security pulled right out from underneath you for weeks at a time when your sister gets sick. 

     This weekend was Maddie's first dance competition.  She has been attending hours of practice every week since July preparing for competition and something she has been very excited about.  I heard from family members that Maddie was really worried that nobody would be able to come to her competition because they would need to be with Bailey.  She would never tell me and Dustin this, because she wouldn't want us to worry, but I knew this was a real fear for her.  This is why it was so important for me to leave the hospital on Friday to go support her.  She did fantastic and I was so proud.  I don't know how many of you have ever been involved with competitive dance teams but I had no idea what was in store for me this past weekend.  Maddie's 4-6 grade ensemble had to perform at 10:30 PM Friday night in Kingwood and then we had to be back at 8 AM the next morning.  They danced again at 10:40 AM and we did not finish the dance awards until 12:30AM.  I think we crawled in bed at 2:00 AM.  It was worth the wait!  Maddie's ensemble took 1st and 3rd place in their age group.  We even got to bring daddy and Bailey for some of the evening events and they got to see her get her awards.  All in all, it was an exhausting but blessing filled day.  Thanks for indulging me in Maddie some of the spotlight:)

This one was taken at 12:30ish.  This would be why she looks so tired!!

     So, I don't know that I will be blogging too much more unless something comes up.  I am planning for Bailey to go back to school on Thursday.  I have to take her back downtown over the next few days for clinic appointments, but I think we will all be glad to get back to a normal schedule.  Thank you again for all your thoughts and know that the Gist's are eternally thankful for you.

In Christ,

Jackie