It's Her Birthday!

It's Lucy's 2nd birthday!  Can you believe it?  Our Lucy Belle turned two years old today, and I couldn't be more proud of our girl.  It seems like yesterday that my water broke and two hours later, we had a baby girl being whisked off to the NICU.  We were uncertain of what was to come then and yet, when we first laid eyes on that petite blonde baby, we were full of hope and anticipation.  The same is true to this day.

Lucy Belle means "Beautiful Light", and Lucy truly is a light for me.  I had no idea how much of a blessing, how much of an encouragement, how much of a life-line that Lucy would be to me.  She shines light into the dark places of our hearts.  She reminds us of the beauty that comes from being broken.  Truly, I don't know what Mike and I would do without Lucy - especially during this time of loss.  Lucy gives us hope and she reminds us of Ellie Kate in almost everything that she does.  It's an indescribable blessing to us.

Today was filled with appointments, all of which went rather well.  The doctors are a bit concerned with Lucy's rapid weight gain.  She's gained two pounds in one month!  Don't get me wrong, I LOVE seeing a little chunkiness on those cute thighs. She even has more energy because of that extra weight!  But, we don't want the rapid gain to become a pattern, and with the metabolic issues coming along with NKH, we need to keep an eye on it.

Little Lucy also has had a major increase in seizure activity, numbering about 20 seizures a day that we see (we know there are many that we don't notice or that are not visible) .  As you know, NKH is just such a mystery, and the doctors truly don't know what causes the increase in seizures.  Has it been her ear troubles?  Is it her gut?  Are her metabolic issues causing a problem in breaking down the anti-seizure meds?  Is it progression of NKH?  Is it because of her rapid weight gain?  No one knows, like I said.  All we can do is rule things out, which is why we checked her glycine levels today.  Those results may give us a bit of direction.  We are also upping some of her anti-seizures yet again in hopes of slowing down the seizure monster.  Please pray that the seizures will slow down and leave little Lu Lu alone.

We are also still having to use pain medicine to help with Lucy's crying spells.  These "crying spells" are just unexplainable, which is maddening.  Is it seizure activity?  Sometimes, yes.

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In closing tonight, I leave you with Isaiah 35, which was given to Lucy and our family for this coming year.  How faithful is our God, even when we are not!!  

The Ransomed Shall Return - Isaiah 35, ESV

1 The wilderness and the dry land shall be glad;

the desert shall rejoice and blossom like the crocus;

2it shall blossom abundantly

and rejoice with joy and singing.

The glory of Lebanon shall be given to it,

the majesty of Carmel and Sharon.

They shall see the glory of the Lord,

the majesty of our God.

3 Strengthen the weak hands,

and make firm the feeble knees.

4Say to those who have an anxious heart,

“Be strong; fear not!

Behold, your God

will come with vengeance,

with the recompense of God.

He will come and save you.”

5 Then the eyes of the blind shall be opened,

and the ears of the deaf unstopped;

6 then shall the lame man leap like a deer,

and the tongue of the mute sing for joy.

For waters break forth in the wilderness,

and streams in the desert;

7 the burning sand shall become a pool,

and the thirsty ground springs of water;

in the haunt of jackals, where they lie down,

the grass shall become reeds and rushes.

8 And a highway shall be there,

and it shall be called the Way of Holiness;

the unclean shall not pass over it.

It shall belong to those who walk on the way;

even if they are fools, they shall not go astray.

9No lion shall be there,

nor shall any ravenous beast come up on it;

they shall not be found there,

but the redeemed shall walk there.

10 And the ransomed of the Lord shall return

and come to Zion with singing;

everlasting joy shall be upon their heads;

they shall obtain gladness and joy,

and sorrow and sighing shall flee away.