This Little Light of Mine

Last night a community of neighbors and friends joined in front of our house again to hold another beautiful candlelight vigil for Kaitlyn. Along with those near us, numerous people lit candles in their own homes across the country or had a vigil near them in Kaitlyn’s honor. All the love, support and prayers are appreciated beyond words and I’m happy to report Kaitlyn rested peacefully last night.

So many people showing love for Kaitlyn

That's a lot of support

Kaitlyn's candle shining (top right)

It’s simply amazing to see the reach and impact Kaitlyn has had on so many, all with only having spoken 4 words and being only 2 1/2 years old. If spiritual impact and making a difference in others lives were the measure of a full life, then I would say in her case it has been full and then some.  When I think of her and the impact I am reminded of Matthew 5:14-16. 

Shine on little ones!

Matthew 5:14-16 “You are the light of the world. A town built on a hill cannot be hidden. Neither do people light a lamp and put it under a bowl. Instead they put it on its stand, and it gives light to everyone in the house. In the same way, let your light shine before others, that they may see your good deeds and glorify your Father in heaven.

I just picture Kaitlyn singing “this little light of mine…I’m gonna let it shine... let it shine, let it shine, let it shine.”  Shine on baby girl, you amaze me and make us so proud!

Kaitlyn did rest well last night and has been sleeping quite a bit over the past few days.  Her skin color has definitely begun returning to normal and even the yellow in her eyes has gone down.  We are not sure what to make of this exactly.  We think it could be that her circulation is not doing as well so the color just isn’t as evident, but right now we really don’t know.  It is nice to see her not so orange though.  

Her color looking a little bit better

Cousin Daniel came over for the vigil too

This morning while bathing her, I noticed her belly button looked more distended than usual.  Changes of any kind prompt a full exam by mommy or daddy, so I quickly checked her over and noticed her belly had a definite fluidy/jello like feel.  Usually her skin rests firmly against her large hard liver, but this time I could press in on what felt like a layer of water under the skin before feeling the liver and if I tapped her belly it had a ripple like jiggle.  The best I could equate it to would be soft jello. This was a sign we did not want to see.  Her little tummy area has ascites, or fluid, accumulating under her skin and this is another indicator of major problems with her liver.  We have started her on Lasix, a diuretic, to try and flush extra fluids out of her body and are holding her feeds until this evening. 

Curly locks and her big blue bow

Again we ask that everyone continue to pray for her comfort, that if the medications can help that they work quickly to help her body rid the excess fluid, and that Deanna and I continue to clearly know what is best and feel comfortable with whatever choices lie ahead.