What a week!  On Thursday, two weeks ago, they finally removed the chest tubes and my girl has made lap after lap of this unit! She usually is walking at least a mile everyday.   Her pacemaker has made a couple of hiccups this last week.  Just to make sure that we were not too comfortable with being boring, on Tuesday, Wednesday and Thursday morning her heart rate went as low as 50 beats a minute.  It scared the doctors, myself and her dad half to death! Madison was sleeping and when we woke her to ask if she was OK, she was mad that we had woke her up!  We had 4 of the EP doctors standing around the machine talking about how to fix things and even had to contact the company to see what was going on.  Madison still has kept her humor, “How many doctors does it take to screw in a light bulb?”  She then looked at me and said “do you ever feel that we are lions on the Savanna that their observing to see if we eat our prey?”   I wonder where she gets her humor from!

The good news was after interrogating the pacemaker, all the leads are good and everything seems to be intact.  Thursday morning the young fellow was here and she tweaked her PVarp to a little longer and it seemed to bring her out of whatever was going on.  So for the past few mornings, no drop!  We seem to be on the mend from whatever was going on.  Then we have had cord issues, but I think we got it fixed.  Her cord for her VAD had come out of the plug-in and would make my heart jump when it would not read that it was plugged in, so I think we have that fixed now by simply tightening up a screw.  We have been working on homework, keeping up with all of the training, doctors and therapist that come in and out the door, so I apologize for not getting an update sooner.  We also had some very special guest here over the weekend.  Uncle Trevor and all the kids came and saw us.  It had been a month since we had seen them, and we missed those smiling faces!  It was really hard to see them go, but we know we will be back together before long!

Now onto the fun stuff……..

“Our cup runth over!”  When they approached us about having a fundraiser, Dave and I repeatedly said no.  We are so thankful that they did not listen to us!  Thank you does not seem to do Thursday night justice, but we cannot thank everyone enough for the love that our family felt during the evening!  It was truly overwhelming to be a witness “from afar”, but we were so blown away by the turnout.  There is not enough thank you’s to express what all of you did for our family!  To those that that volunteered time, donated items, baked the goodies or helped in any way we just cannot thank you enough for making us feel so loved and supported. 

Madison and I have found a new song to listen to when we are having a tough moment or are missing Dave and the other kids.  We have decided that when we need a new perspective we focus on the rainbow:

 “Well the sky is finally open, the rain and wind stopped blowin'
But you're stuck out in the same old storm again
You hold tight to your umbrella, darlin' I'm just tryin' to tell ya
That there's always been a rainbow hangin' over your head “        

~“Rainbow”-Kacey Musgraves

We are pretty partial and think our Madison is amazingly strong and courageous to have been through everything in her short 14 years. The “Rainbow” that all of you gave us, wasn’t just the fundraiser, it was that you took the time to be there, volunteer to help,  send a card, or just take the time to see how we are.  We saw something amazing happen that night!  It wasn’t where you were from, but that all of you came together to make us feel completely loved!  So the next time we find ourselves stuck out in that same old storm, we will remember the rainbow you have given us to fight those tough days.  GOD BLESS!!!  WE LOVE ALL OF YOU!!!!!