Good morning dear Father, 

it is Christmas Eve.  We had our family Christmas last night.  It was a sweet time.  How I love our fireplace and the beauty of the lights, reminding us that You truly are the light of the world.

And what makes You the light of the world?  Among so many other things Father, the fact that You are Love.  Your Love shines into our hearts, giving us purpose, meaning, strength and the ability to go on.

We tried to read the Christmas story and advent readings.  And we did pretty well despite two little ones who fussed off and on.  We all juggled the babies and our Bibles in our laps, me desperately trying to soak in the beauty and meaning of these words.  

Isaiah 11:1-10

1 There shall come forth a shoot from the stump of Jesse, and a branch shall grow out of his roots.

2 And the Spirit of the LORD shall rest upon him, the spirit of wisdom and understanding, the spirit of counsel and might, the spirit of knowledge and the fear of the LORD.

3 And his delight shall be in the fear of the LORD. He shall not judge by what his eyes see, or decide by what his ears hear;

4 but with righteousness he shall judge the poor, and decide with equity for the meek of the earth; and he shall smite the earth with the rod of his mouth, and with the breath of his lips he shall slay the wicked.

5 Righteousness shall be the girdle of his waist, and faithfulness the girdle of his loins.

6 The wolf shall dwell with the lamb, and the leopard shall lie down with the kid, and the calf and the lion and the fatling together, and a little child shall lead them.

7 The cow and the bear shall feed; their young shall lie down together; and the lion shall eat straw like the ox.

8 The sucking child shall play over the hole of the asp, and the weaned child shall put his hand on the adder's den.

9 They shall not hurt or destroy in all my holy mountain; for the earth shall be full of the knowledge of the LORD as the waters cover the sea.

Selah.

As I think of this Christmas, it isn't like it was when I was a child, all about the lights, the music, the gifts, the food.  

There are deep, deep things going on in my heart this Christmas.  Just yesterday Father, I had another conversation and doctors appt for Josiah.  After all my effort to get a swallow study for Josiah, the swallow study still hasn't come through and the doctor can't approve for the lvns to feed Josiah by mouth.  The swallow has been done but it must be sent over from CHOC.  And even then Father, who knows if they will say it is outdated and I will have to do another?  Medical policies are so challenging sometimes Father.  Simple care and simple feeding of my child becomes so challenging.  And sometimes it is just so hard emotionally, and the tears flow.  

And then I see the sorrows of this world oh so clearly.  The sorrows of disabled children, abandoned, neglected because of their disabilities.  I see the sorrows of babies aborted.  The brutal killing of the littlest ones in our society.  One was aborted because he had a deformed left hand.  I see the values we all hold in our heart.  If there is not perfection, there is no value.  I think of the screams of those precious little ones, the unspeakable pain they must go through and my heart weeps.  And I think of the evil on the other side of the world, ISIS and the slavery of women and the beheadings and Jihad. And I wonder about the evil, and the lust for power and glory to the exclusion of love.   And sometimes Father, often, I look inside my own heart.  I see the desires I have to follow you to be a person after Your heart, and instead I see impatience, and anxiety, and anger and frustration as I walk through my daily struggles of having way too much to do, of longing for peace and quiet and having noise, confusion and chaos, of my longing for order and peace and constantly having the chaos of precious little people and needing to teach little ones how to love each other, get along, be responsible etc., etc., etc. 

But Lord Jesus, what is the hope of this world.  

How thankful I am Father, that the hope of this world is not in me.  That the hope of this world in not in medical systems, although medical help is a wonderful thing.  That the hope of this world is not in government system, although I do believe that justice is worth fighting for.  

But our ultimate hope Father is in You, and Your precious gift of a relationship with You,  and in the changed hearts You give us when we walk beside You, longing to see the world as You do.   And Father, we are so, so thankful that there is ultimate hope.  When we die we can have the hope of seeing Jesus face to face.  What a beautiful time that will be.  All the sorrows of this world will fade away.  

Until then, we are thankful Jesus, that You are indeed, the light of the world.  You are the light of the world, in the darkest night.  As we come to the darkest time of the year physically, and as we light up a miliion different small lights, we can know that in the great darkness of the world, that You Jesus, are the light held up to the world.  You are the answer, the peace, the joy, and the love.

John 3:17-21

17 For God sent the Son into the world, not to condemn the world, but that the world might be saved through him.

19 And this is the judgment, that the light has come into the world, and men loved darkness rather than light, because their deeds were evil.

20 For every one who does evil hates the light, and does not come to the light, lest his deeds should be exposed.

21 But he who does what is true comes to the light, that it may be clearly seen that his deeds have been wrought in God.

II Cor. 4:6 

6 For it is the God who said, "Let light shine out of darkness," who has shone in our hearts to give the light of the knowledge of the glory of God in the face of Christ.

Psalm 119:105

105 Thy word is a lamp to my feet and a light to my path.

John 1:1-5

1 In the beginning was the Word, and the Word was with God, and the Word was God.

2 He was in the beginning with God;

3 all things were made through him, and without him was not anything made that was made.

4 In him was life, and the life was the light of men.

5 The light shines in the darkness, and the darkness has not overcome it.

Another ER visit and more to think and work through

So yesterday.......  Ah, yes, yesterday.  We got home at 12:15 actually THIS morning I guess.  The whole family.  Sweet little Josiah helped the family to bond in the ER again.

It all kind of started on Sunday, but more specifically last week.

Josiah is on Pediaure for his daily food intake and he has been for over a year.  Once we got through the trauma of his gtube and fundoplication surgeries, as well as his hip abduction surgeries, I was able to start thinking through smaller everyday things.  So, naturally as a granola geeky mom who has always loved nutrition, I start looking at his diet.

Now before I give Pediasure negative press I need to say this.  It has been working.  Josiah is growing.  It can be in his food bag without me worrying about it going bad over 24 hours.  But I am struggling with giving him just Pediasure for growth.  Here is why.  Take a look at these ingredients and see if there is anything that concerns you.  (My first though honestly was that if the second ingredient is sugar does that raise blood sugar levels too high.?....., I start thinking diabetes.... , I start dreaming of healthier carb choices.)

 ingredients:

WATER, SUGAR (SUCROSE), CORN MALTODEXTRIN, MILK PROTEIN CONCENTRATE, HIGH OLEIC SAFFLOWER OIL, SOY OIL, COCOA POWDER (PROCESSED WITH ALKALI), SOY PROTEIN ISOLATE, MEDIUM-CHAIN TRIGLYCERIDES; LESS THAN 0.5% OF: SHORT-CHAIN FRUCTOOLIGOSACCHARIDES, POTASSIUM CHLORIDE, MAGNESIUM PHOSPHATE, CELLULOSE GEL, CALCIUM PHOSPHATE, CALCIUM CARBONATE, NATURAL AND ARTIFICIAL FLAVOR, POTASSIUM PHOSPHATE, POTASSIUM CITRATE, SALT (SODIUM CHLORIDE), CHOLINE CHLORIDE, SOY LECITHIN, MONOGLYCERIDES, C. COHNII OIL, ASCORBIC ACID, CELLULOSE GUM, CARRAGEENAN, m-INOSITOL, TURMERIC, POTASSIUM HYDROXIDE, TAURINE, FERROUS SULFATE, dl-ALPHA-TOCOPHERYL ACETATE, L-CARNITINE, ZINC SULFATE, CALCIUM PANTOTHENATE, NIACINAMIDE, FD&C RED#3, MANGANESE SULFATE, THIAMINE CHLORIDE HYDROCHLORIDE, PYRIDOXINE HYDROCHLORIDE, RIBOFLAVIN, CUPRIC SULFATE, VITAMIN A PALMITATE, FOLIC ACID, CHROMIUM CHLORIDE, BIOTIN, SODIUM SELENATE, SODIUM MOLYBDATE, POTASSIUM IODIDE, PHYLLOQUINONE, CYANOCOBALAMIN, AND VITAMIN D3.

CONTAINS SOY AND MILK INGREDIENTS.

 These ingredients are...., well...., not what I would feed my other children.  (Ummmm., ever!!)  But you know what.  I need Josiah to grow.  The doctors need to know Josiah is going to grow and this is easy and simple for them.  They know that PediaSure is clinically proven.  It is scientifically proven.  

But I still requested to see a dietician...., I am grateful they obliged.  We worked out a very loose plan.....

Over the weeks I have a really hard time getting it started.  It is so easy to just put food in a bag and on continuous feed.  Giving him real food means I can't leave it out for 12-24 hours which means that there are food safety issues.  

And food in large amounts seems to make him gag and choke.   Sometimes this gagging and choking is very mild and find and he can get himself out of it.  Sometimes like yesterday it crosses the line into dangerous.  Very dangerous.  

It was at the point where they think they put him into seizures.  Sunday they were very mild and there were only 1-2.  Yesterday there were 10-12 in one day to where he stopped breathing and choked on his own saliva and changed colors for 30-60 seconds.  My neighbor saw it and was as terrified as I was.

Off to the ER we went.... my sweet neighbor driving so I could sit in the back if Josiah had another seizure and had a hard time breathing again.

After being for 7 hours their basic thoughts were that these were seizure episodes and he had mild dehydration.  So he was put on a basic rehydration formula.  And they want to up his seizure meds slightly (which always makes it so hard.... upping any med is really hard on me), and put him back on Pediasure until we can see the GastroIntestinal doctor in a week (which coincidentally happens to be Elijahs's birthday, poor little guy).

It will be simpler, but I still don't like the ingredients in what I give him daily.  But we need to see if we can get him to a normal baseline again and than maybe they will let me try and tweak things again?

But maybe they will be too nervous to do that. And I completely understand. And than I will get frustrated and nervous.

So I am praying that the doctor and I can work together really well.  And that I can understand their concerns.  And that they can understand mine.  And if mind changes and understanding needs to happen that that can happen smoothly and peacefully.

And that sweet Josiah can thrive.  And that my family can thrive under all the pressure they are under now.  And that we would all love one another.  Because really, that is the most important thing right?  And it has been shown that it is one of the best medicines.  

So, these are my struggles.  And these are poor Josiahs struggles.  

And I'd appreciate prayer.

I have more research to do.  I need to see if he has food allergies or sensitivies because he did ok with certain foods for quite a while.  I need to see if feeding him meal like amounts causes problems.  I tried some supplements to try to give him better nutrition and I need to see if those caused problems.  One did say use with caution if there is a history of epilepsy.  

So, I need to do research.  Along with all the other caregiving responsibilities.  And taking care of my sweet other children.  And my hardworking  husband who this puts stress on.  And trying to move.  And being pregnant.  And going to doctors appointments for OTHER things.  And getting Elijah through oral surgery this Thursday.  

Oh my.  

I'd appreciate any and all prayers.  

But I know all of you have things going on in your life as well.  Please feel free to leave any prayer requests and I will try and pray as I am able.  

God bless anyone who actually takes the time to read this.  And have a really good day.