Academic Vocabulary

That is what we call our student's vocabulary notebooks in first and second grade.

When we received Matthew's first diagnosis back in October, I immediately tried to find blogs of families who had children with the same diagnosis.  I enjoyed reading their stories, and was always encouraged to know I wasn't alone.

I hope that someone finds my blog someday as they travel a similar journey, and my heart is that they would be encouraged by the hope we've found in choosing to believe that God is who he says he is, even when the storms come. 

So, in an effort to be found in a google search, I'm going to throw around a few (probably) new vocabulary words for you to put in your academic vocabulary notebooks :) 

Matthew was first diagnosed with a neural tube disorder called encephaloceles.  His neural tubes didn't fuse completely and consequently, they leaked spinal/cranial fluid and brain tissue in the back of his neck.  This is a very, very rare complication that happens in something like 1 in 5,000 pregnancies.  The chances of survival to birth are extremely slim, and much less after birth.  Matthew's encephalocele continued to grow as he did. 

During the second trimester, we found out that I no longer had any amniotic fluid.  Apparently, the baby takes over that job after the first trimester, and for some reason, Matthew couldn't do it.  During ultrasounds, the technicians and doctors could hardly make out where his head was because they couldn't see anything without the fluid (it creates contrast).  Little buddy was all squished in there with no room to move.  Babies need amniotic fluid to develop many of their organs.  They swallow it to develop their lungs and it moves through their digestive system to practice those functions.  Our little fighter couldn't do any of that, so he had several organs that were under-developed.

The second major diagnosis Matthew had is called arthrogryposis (also very rare- about 1 in 3,000 births).  A mild case of arthrogryposis is club foot.  Matthew's was all over his body.  His little joints and muscles were not formed normally.  Sometimes arthrogryposis can happen because of low amniotic fluid, and sometimes it can happen for other medical reasons.  We don't know why Matthew got it, but his sweet little body was severely affected by it.

With all of these complications, Matthew was not expected to survive until (and especially through) birth.  His umbilical cord was the only reason he was surviving.  But being the super dude he was, he pretty much destroyed all odds and survived not only through delivery, but for an HOUR!  You better believe we are proud parents!

We think that is a miracle and a blessing.  Although his eyes never opened and he never took a breath (that we know of), we are so thankful that we know he heard our voices and felt our touch at least for a moment. 

Doctors think he probably also had a chromosomal abnormality, but we're still waiting on those test results.  Keep praying.

Hallelujah

I have always been in love with the word "hallelujah". I never really knew why...I just liked it. Last week I was listening to the radio and at the end of a song (a song I wasn't particularily interested in), the lyrics were

"Now we stand amazed. And now we sing the word they sang in ancient days. A single word that's OVERFLOWING ENDLESS PRAISE....hallelujah."

I just wept. I realized, that's why I've always loved that word, without even knowing why. I think God must have written the meaning on my heart. I could sing the end of that song all day long.

As Ryan and I have yielded to the plans God has for us, although different than we anticipated, we have found so much JOY in God's promises and I just can't help but praise God for the way he has extended grace, peace, and the love of the body of Christ to us. We've seen Him use our little baby to draw people to Himself and have realized that God is answering our prayers that he do whatever it takes to draw people in our life to the Lord. I would go through this all over again if even one person came to know Jesus Christ as Lord and Savior.

And I would continue to sing HALLELUJAH!