Monday, October 13, 2014

The Essence of Human Existence

The other day in church, our preacher gave this pastoral prayer.  It touched me deeply, because this is how I feel regarding life.  I pray that if anything were to ever happen to anyone dear to me, that these words resonate within my soul.

Gracious God, 

That is the essence of human existence. . .that there is the tragic and there is the glorious.  There are the things that hurt us in life and the things that bring us joy in life.  We are always, it seems to be, tossed from one to the other and find balance-- find simply walking in a straight line--a very difficult thing.  We are slung back and forth from dark to light, from blinding brightness, to a gentle quietness. 

Help us.  

Help us to know that in the midst of all of that, You walk with us.  In those times when we would simply whistle to ourselves as we are walking down the street in a sense of contentedness, You are with us.  In those times when it seems as though we are terribly, terribly alone and we hurt in a way that no one has ever hurt before, still yet, You are with us.  Keep us ever mindful, and may we find the ways of thankfulness because You are with us.  

Not because life is what we want it to be.  

Not because all is well.  But because You are with us and all is right--even in the hardness, all is right--in Your presence. 

That's a hard thing to understand.  

So we ask that You would help us in the groping times to find You and the right.  And in the groping and the hoping and the longing we find that our longing reaches beyond our own needs into the wanting goodness for those others around us and those others in far off places.  

Later this morning we will pray together, "Your Kingdom come on Earth as it exists now in Heaven."  May Your Kingdom begin the coming with us and our willingness to live as Kingdom children.  Remembering and holding dear to all those for whom the kingdom seems very far away.  This we ask in the name of Your Holy and Beloved Son.


And Amen.

(Just in case anyone was wondering, I received permission from my preacher to publish this.  He wasn't concerned with me sharing his name.  I would love to give him full credit, but for the sake of Internet safety, I've decided to keep his name off of this blog.)

This Little Girl Is Moving!

On September 19, Lily's teacher sent me this video.

Today, she sent me this one.  Boy, has this little girl come a long way.  Happily so!

Friday, October 10, 2014

Good Results

Just a quick post to say that today's results were good.  Not great, but we'll take good and a "see you in two months."  Numbers were down from a 3 on the stick to a 1+.  Not sure what that means, but the doctor was pleased and showed no concern.  So it looks like no sedation because no biopsy!!  Yeah!!

I'm glad to have the good results, especially since we were at the doctor's office for roughly 4 1/2 hours!  Simply put:  Lily was bagged for a urine sample. She obviously has a strong bladder because I gave her water AND her formula while there, plus, she had already had her morning formula.  We waited.  And waited.  AND WAITED!  Still no. . .um. . .filling of the bag.  Finally, over 4 hours later and 1 million glances at the bag to check and see  if it had been filled, she relieved herself.  ONLY. . .she completely missed the bag!!  Luckily, a small puddle had formed on the bed, and the doctor was able to run the stick through it to get the test results.  

This is how life goes for us.

How do we handle it?

We laugh.  

Lots to be happy about and celebrate.  No use crying over spilled pee milk.  :)

Thank you for all of the prayers!  

Much love!

Wednesday, October 8, 2014

Things Just Got. . .Interesting

That's what I heard from the nephrologist when I took Lily to her appointment.  It was a routine appointment, just the normal six month checkup.  This, however, was with a new doctor.  I don't know why, but her usual nephrologist quit the practice.

That just may have been a small blessing.

Usually, when we would go see the nephrologist, he would not bag Lily to get a urine sample.  To help make a long story short, let's just say that cathing Lily is very difficult, and catching her urine in a bag can take up to 2 hours.  Usually, he'd ask how she was doing and occasionally order bloodwork.

This time, probably because she was seeing a new doctor, this new doctor ordered her to be bagged for a urine sample.  Bear with me here, but Lily wasn't going to see the new doctor.  She began the session with yet another new doctor but not THE new doctor.

She was bagged, although not for a sterile catch, and we waited.

And then THE new doctor came in.  And that's when she said, "I wasn't going to see Lily today, but things just got. . .interesting."

Apparently, Lily's protein level in her urine was high.  OK. To say high, that's an understatement.  It was HIGH.  Like, off the charts high.  Over 500.  To understand how high this is, the normal amount in a random sample is normally less than 8 mg/dL.  So yes, HIGH.

According to the doctor, this could be something called nephrotic syndrome.  At the time, Lily was sick, so the doctor wants to recheck her tomorrow, since she is now well.  But then, I spoke with Lily's pediatrician, and she said the most she's ever seen it get when a child was sick was in the 30s.

So tomorrow, the recheck.  And if the protein levels are still high, Lily will have to be sedated to have a biopsy on her kidneys, so I'm a little nervous about what tomorrow is going to bring.

On the other hand, I am so thankful.  Had Lily's original nephrologist not left the practice, she probably would not have been bagged, and who knows if bloodwork would have been done.

Another good thing that may come out of this is that if Lily does have to be sedated, we're going to schedule a hearing test to be performed while under.  Lily's ear canals are so small that they can only perform a hearing test that requires sedation.

Which brings me to another blessing.  One of the physical therapists associated with Pattison's asked me if Lily could take part in a research project that she is doing.  It's called SMART, and I can't tell you what that stands for, but I can tell you that it has to do with a person's reaction to external stimuli and what that says about that child's communication.  I am in no way doing this justice with my explanation.  What I know is that Lily smelled and tasted and saw and felt and heard different things, and her reactions were recorded.  Well, we found out that Lily did not perform well on the hearing part.  We knew she couldn't hear well, but exactly how much, we didn't, and still don't, know.  And whether that is an audiology issue or a neurological issue, we don't know.  But if Lily goes for that biopsy, we will find out.

So I'm not hoping that Lily has to have the biopsy because she doesn't do that well coming out of sedation, but if she does, we will finally have a chance to get that hearing test done, and we'll be able to find out for sure how well--or how poorly--Lily can hear.  We'll also find out what's causing these protein levels to be so high.  But I'm not looking forward to that.