Updates on Explorer

I have had a few of you wonderful readers inquire about how Miss Explorer is doing.  

If you don't know what I'm talking about, you can read her story in parts here, here, here, here, and here. But, the short of her story is that last year when she was born, her jaundice stuck around longer then normal. At 8 weeks she still had jaundice and the doctor started checking out her liver enzymes.  They turned out to be high, so along came many specialist visits to figure out WHY her liver wasn't doing well.  

Truth is, they never-ever-found out what was wrong.  The doctors could not figure out WHY her levels were off.

What I realized I never told you about is that what they did find was that her Methylmalonic Acid was 10 times the normal level!!  You are asking what on earth is that??  Yeah, I hadn't heard about it until April, and now know more then I could have imagined.

You can get protein from two places, one the food you eat, and two when you have muscles breakdown.  Your body turns that protein into amino acids including 4 specific ones.  These Essential Enzymes combine with vitamin B12 to produce energy and growth.  If your body does not break down the amino acids correctly, you can have Essential Enzymes that can't bind with B12 and can't produce energy and growth.  This can lead to a build up one one or more of the Essential Enzymes and produce health problems.  The same can happen if you don't have enough B12.

Methylmalonic Acid is one of these Essential Enzymes.  And, since Explorer's was 10 times the normal level, it meant hers were not binding with B12.  Either she didn't have enough B12 or there was a problem with the way her Methionine was being made.  

That landed us in the Geneticists office.  With a new round of tests.  

First assumption was that, since she was strictly breastfed, it was because I was B12 deficient and so was she.  Neither of us were B12 deficient.  Theory went out the window.  

Second assumption was that, if she truly did have Methylmalonic Acidemia (the 'name' for this problem), she would not be able to pass the newborn screen test.  But, she had passed it, and running it again she still passed.  Theory out the window.

So, what was next idea?  Wait.  

In the meantime, many many many tests were run.  With this one a bit high and that one a bit off.  Nothing giving red flags, but some razing an eyebrow.  

Side note is that I found out many children with Autism have a high level of Methylmalonic Acid.  Interesting, huh?

So the doctor waited, and we PRAYED!!!  We prayed, our families prayed, or friends prayed, our Bible study group prayed, YOU prayed (thank you!!).

Back when we first found out Explorer was sick, I took her up to the altar at church and held her before the Lord.  I asked for His will in her life.  From that moment on, I was confident that His hand was on Explorer and that He would bring glory to Himself in Her illness and throughout her life.  I will always hold to that assurance.

Our last appointment was in July.  The Geneticist said that she didn't know what was wrong with Explorer.  She wanted to run every single blood test on her again.  If we still got bad results, she was calling a friend the NHS.  She was baffled.  

So, she took the tests.  A week later she called back.  Everything, everything but one lab was NORMAL!!!!  The only high lab is her Methylmalonic Acid.  But, it had been at around 2600 and was now down to 320!!!  

The nurse said-well it was probably a transient vitamin b12 deficiency.  

I love when health professionals have to draw at straws to explain away miracles!  It was obvious to me that God had chosen to heal Explorer!!  We are so thankful!!

We have one last appointment in November to get the official all clear.  We look forward to the good news!!

Thank you all for praying for our sweet baby girl.  We are more thankful then we can ever say!

God Bless you :)