Stream of Consciousness

I mentioned back here that we were noticing some subtle changes in Katy. For the past two weeks or so we have noticed Katy becoming increasingly more tired and cranky. When the changes are subtle it is so hard to know if it is heart related or just 3 year old related. To be cautious and to make sure that we weren’t unknowingly ignoring a sign of congestive heart failure, we called the team explained that Katy was requesting naps, ( where she had most recently just starting to get to the point of not needing a nap) more cuddle time on the couch and just a bit more cranky and demanding.

The team heard us, and agreed that it could be heart it could be a 3 year old. Lets wait and see. Ahh… my favorite response, wait and see, right up there with a “it’s a virus” diagnosis. They both mean there is NOTHING I can do… lets see were it goes!

So we went about our life… Mike and I had our first visit with the trainers at the YMCA, I started back to classes… just a few more sessions to go. We painted, and shopped, had bath time and folded, LOTS AND LOTS of LAUNDRY! ( I swear it multiplies by the time it comes back up from the laundry room. )I am sad to say that as much as I try… I can’t seem to get the laundry ( that is all folded and separated by family member) into the DRAWERS!!! Anyone else have that problem?!

OK. Back to Katy…

We did all that knowing and silently acknowledging to each other, that Kate wasn’t right and wondered what was going on, praying she would snap out of it and we would continue to wait for a new heart from the comfort of our home. ( We still might be doing that… We don’t know anything different as of right now)

So yesterday, we realized that in addition to Katy being lethargic, and cranky she had really no appetite and ZERO interest in eating. Still drinking and peeing ( which is a good thing) but, really ate NOTHING yesterday. That symptom alone would be enough to scare us, add that with the whole cranky tiredness we have going on and there really is no denying that this is more likely heart related… and not just a tired 3 year old.

So for the second time since we had the G tube placed back in August, I was happy to have it last night. With Kate refusing to eat we can be sure to know she is getting X amount of calories and vitamins, through her tube feeds. I would much prefer for her to eat her calories, but if she won’t then I know we can maintain her with feeds. For Kate to lose what little weight she has would be devastating.

So we called the team this morning and of course they agreed that the no eating was a concern and it was time for a full work up. So Monday we are headed in for blood work, EKG, Chest X-ray and an Echo. Hopefully, they all come back normal, or maybe her meds just need to be tweaked.

Blahhhh…

I know here comes Debby Downer… I am! I am just down… and the only thing worse than me being down is Mike being down… and he is. I mean who could blame him, he is here, right along side me… trying to get through the days…waiting and waiting and some more waiting. Watching subtle changes in his little girl, our little girl reminding us that her heart is getting weaker. For as much as Katy is the light of my life…she clearly hung the moon in Mike’s eyes. I have never before seen such an amazingly, wonderful relationship than the one that Mike and Katy share. From day one they have been smitten with each other and let me tell you how happy that makes my heart! I love that they each have the other wrapped around each others fingers.

So although, I could tell you all the ways our life could be worse… and I know it could. I am reminded of what a dear friend always says when I say that…she kindly tells me that I am right, it could be a lot worse, but it could be a heck of a lot better. I suppose she is right, but when I think that, I’m reminded that maybe some of our days are long and our nights are often sleepless, but most times are days are fun, and we are busy making happy memories, and our faith is restored when friends, family and sometimes perfect strangers do nice things for our family because we are going through a difficult time.

So in an effort to take back our life, and to STOP living ( if you can even call what we have been doing living) and take back control of our days, our lives, both as a family, as a couple and individually.

It is best for all of us, but I know its certainly not going to be easy.

The kids are signed up for story hours twice a week.

A Family membership to the Y was just so kindly and generously donated to our family. I plan on making good use of that member ship.

Mike and I had a date night on Saturday… I can’t tell you the last time we did that and it was ordered by Katy’s doctor.

So expect some more fun pictures and expect to see us getting back to the old ways… I know that in any moment our whole life can drastically change… but right now I am going back to the basics, remembering how to have fun and enjoy my family.

Thanks to all our new readers…welcome!! Glad to have you. I love hearing from you and love that prayers are being said for our family all over the world.