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.