Seed of Doubt

The last two days Sarah has fallen asleep during lunch. I know this happens sometimes, I remember a pic of me asleep in my spaghetti. I didn't think much about it except that maybe I need to start feeding her earlier so she is ready to nap when she has been getting tired lately. Then my wise husband pointed out that we should be aware of the possible connection between her being really sleepy at this time and CPT II. A friend of ours was eating with us and said he was wondering if there was a connection between the two also.

Is this lethargy or normal sleepy?

Ah man . . . this started the whole process of trying to be aware but not worry about it. The whole time she slept uninterrupted (we cleaned her up, put clothes on her, transported her to a birthday party where she continued to sleep) I could feel myself dreading the possible need to rush her to the hospital. She woke up happy, normal, and well rested. She proceeded to enjoy the rest of the birthday party (it turns out Sarah and the birthday girl both woke at about the same time so no festivities were missed).

We'll see tomorrow if she falls asleep during lunchtime.

Doin' Fine

Sarah is doing just fine. We haven't seen any signs that she may have CPT II (this doesn't mean she doesn't have it, because kids can seem fine yet still have it - I say this just to keep myself in reality). She has been sleeping most of the night and waking up happy.

Today she signed that she wanted to eat please and I walked with her to the fridge and asked her what she wanted to eat. She pointed to the 2% milk grated cheese and got excited. I let her have some. We haven't really ever given her much grated cheese before. It was fun to give her what she asked for and not feel like I might be doing something detrimental to her.

Sometime in the next week or so we will need to go in to the lab to get Some of Sarah's blood drawn to check her carnitine levels to make sure they are in the normal range still.

Praise God for this time and that Sarah is healthy.

THE PRESIDENT'S COUNCIL ON BIOETHICS

THE CHANGING MORAL FOCUS OF NEWBORN SCREENING: AN ETHICAL ANALYSIS BY THE PRESIDENT'S COUNCIL ON BIOETHICS
The President's Council on BioethicsWashington, D.C., December 2008


This was a very interesting read considering the situation we found ourselves in with the birth of Sarah, her Newborn Screening results, and the whirlwind of emotions, biochemistry, and medical interventions that occured following the revelation of her results.

Evidence Proving What We Have Thought All Along

This post is long overdo:

We have been gathering evidence (mentally and on paper when we can) to confirm or refute that Sarah has CPT II.

We went to the metabolic doctor at the end of July and the doctor said that she had reviewed all of Sarah's test results and restated our thoughts that we have had since this ordeal started. Her first 3 blood tests were borderline and all following tests, DNA and blood, returned normal. So she brought up the ideas of letting Sarah sleep through the night, stop giving her carnitine, and wean whole milk into her diet. Basically, start treating her like a "normal" child and see how she reacts. Sarah got blood drawn that day for an enzyme assay and we are still awaiting those results. She will be getting blood drawn at the end of this month and the next to test her carnitine levels to see if they are remaining in the "normal" zone.

Sarah is now sleeping through the night and waking up active and cheerful when we get her out of her crib when she awakes. We are still trying to keep her diet low fat for now but we have let her try some new things (without feeling guilty) like hamburger, hot dog, and some food when we are at restaurants. She seems like a normal kid. No behavioral or physical differences.

Praise God!!!!!!!!!!

Then, on Aug. 4th, I received an email from a research study that I had sent some of Sarah's blood to. This email said that based on their research study tests (blood and full DNA screening) it looks that Sarah doesn't have CPT II. There were disclaimers warning that diagnostic testing should be done outside of this research study, but still, it is more evidence proving what we have thought all along.

Praise God!!!!!!!!!!

We are curious what the upcoming test results will show and how it might affect our situation. But for now, we are enjoying this time.

Where is God in All of This?

This possible CPT II situation has been an extra challenge to figure out on top of being a first-time parent. I knew becoming a parent would test my faith. I didn't really expect how deeply it would cause me to question my faith. Yet through every step of the way, through all my questioning, there has been a steady peace.

• How does our situation bring God glory?
• "Will you still love me even when things are not what you expect? Will you still trust me?" - God
• Is God still good even when things are more difficult than you expected?
• Psalm 139:13-14, "For You formed my inward parts; You wove me in my mother's womb. I will give thanks to You, for I am fearfully and wonderfully made; Wonderful are Your works, And my soul knows it very well."
  How come some babies are created with bodies that cannot properly process the food that was created to sustain them?
  
  
  "Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be made known to God." Philippians 4:6

What have I learned through all of this?
My prayers before Sarah was born were often involving giving Sarah over to God and that she would be His child. We asked that God would give us strength and understanding to raise her up to be a woman of God and become the best that she could be. I tend to be a pretty cautious person and a big fear of mine is that I will do something, or not do something, and harm will come from it. With the threat of Sarah having CPT II, it became very evident that I have very little control and that Sarah is God's child given to us to care for while she is here on earth with us. Something could be going wrong internally (and can with any child, CPT II or not, but it just seemed more likely) and we would not know. I learned to trust God more and give Him my anxieties because they were pointless and out of my control. Sarah is just going to live and we will do our best to care for her with whatever needs arise and not stress over things that are out of our control. In this, I have found freedom.

Blessed Be Your Name by Tree63

Blessed be your name
In the land that is plentiful
Where the streams of abundance flow
Blessed be your name

Blessed be your name
When I'm found in the desert place
Though I walk through the wilderness
Blessed be your name

Every blessing you pour out, I turn back to praise
When the darkness closes in, Lord
Still I will say...Blessed be the name of the Lord
Blessed be your name
Blessed be the name of the Lord
Blessed be your glorious name

Blessed be your name
When the sun's shining down on me
When the world's all as it should be
Blessed be your name

Blessed be your name
On the road marked with suffering
Though there's pain in the offering
Blessed be your name

Every blessing you pour out, I turn back to praise
When the darkness closes in, Lord
Still I will say...Blessed be the name of the Lord
Blessed be your name
Blessed be the name of the Lord
Blessed be your glorious name You give and take away
You give and take away
My heart will choose to say
Lord, Blessed be your name



Fool for You by Nicole Nordeman

There are times when faith and common sense do not align
When hard-core evidence of You is hard to find
And I am silenced in the face of argumentative debate
And it's a long hill, it's a lonely climb

'Cause they want proof
They want proof of all these mysteries I claim
'Cause only fools would want to chant a dead man's name
Maybe it's true

But I would be a fool for You
All because You asked me to
A simpleton who's seemingly naive
I do believe You cam and made Yourself a fool for me

I admit that in my darkest hours I've asked, "What if?"
What if we created some kind of man-made faith like this?
Out of good intention or emotional invention
And after life is through, there will be no You

'Cause they want proof of all these miracle I claim
'Cause only fools believe that men can walk on waves
Maybe it's true

Unaware of popularity
Unconcerned with dignity
You made me free
That's proof enough for me

I would be a fool for You
Only if You asked me to
A simpleton who's only thinking of the cause of love
I will speak Jesus' name
And if that makes me crazy, they can call me crazed
I'm happy to be seemingly naive
I do believe You came and made Yourself a fool for me