Life as a Leach

We had a long meeting with the orthopedic surgeon on Friday who will do the VEPTR. I am very, very glad that we met with him.  It was worth the fourth whirlwind trip in five weeks. Bottom line: we can't wait on the VEPTR.  It needs to be done now.  So, our decision is made! He thinks Abby will benefit most from attaching a permanent curved VEPTR after breaking and grafting the ribs to make them expand. (if it sounds painful, that's because it is!). This needs to be done on both sides, but is too risky to do all at once. She will have the right side done August 6th, then have an identica l surgery on the left side 3 months later. This is not the "typical" VEPTR, but he feels it will be our best bet for pulling out her ribs and getting them to grow properly. These are Abby's ribs now (images taken in February--the disc is a little whacky and I couldn't open the most recent CT.  They look the same though!).  There are 4 solid ribs at the bottom on her r...

I just read this article and found it to be pretty interesting.  It discusses the improvements in prenatal testing--specifically the tests that can be done in a less-invasive manner and much earlier in the pregnancy.  But are they really improvements? I am pro-prenatal testing.  100%.  But not  in the way that it is generally used.  Living in our rural town, I want to know if there is any reason for me to deliver at a bigger, better-equipped hospital.  If a test shows up even questionable, I'll be high-tailing it to Baltimore in a heartbeat! Unfortunately, I would venture to say that the majority choose prenatal testing to see if there is "something wrong" with their child so that they can "take care of it."  (For the record, there is never "something wrong" with your child!!!!!  But that's for a different blog post...)  I even read a comment from a reader where I found this article who said that people who would never choose to abo...

I felt compelled to write such a bold title for one simple reason:  it's NOT a death sentence, but all of the research makes it sound like it is.  All of it.  Just check out some of the links on my CCMS page. I have even found an article (not a medically-based one, mind you) where the author suggests that parents who receive a prenatal diagnosis of CCMS should terminate.  I have written the author to suggest that perhaps he should instead recommend that the parents seek out the best medical care to save their child, but he has yet to change the article.  Maybe I should write him again... Perhaps you have found my blog and are a parent or loved one of someone with CCMS.  Perhaps, like me, you went straight to the computer right after you got the diagnosis.  I hope that if you learn only one thing, it's that there is always hope. I'm not naive enough to think that all CCMS stories are as happy as ours is.  But I can tell you that CCMS is not ...

Say what you want about Facebook, but it is a great way to spread a message to millions (billions?) of people worldwide....very quickly! These are two little gems I came across recently!

Isn't this awesome???   Did you know that 9 out of 10 prenatal Down Syndrome diagnoses end in medical termination? Whether it's Down Syndrome, Cerebral Palsy, or Cerebrocostomandibular Syndrome, you can't judge the quality of a person's life by a diagnosis.  Doctors might try to scare you by describing a life full of doctors, medical equipment, and sacrifices. Well, yes, we do have a lot of that.  But we also have laughter, hugs, wrestling, dolls, smiles, kisses, sassiness, and cuddling.   And that definitely outweighs the medical stuff! So please don't judge the quality of a person's life by a diagnosis.   I'm so glad we didn't!

Roe v. Wade is certainly a court case that stands out in the minds of most.  It's the one that ultimately legalized abortions in the United States.  This is my anti-abortion post.  You've been warned. I have always been Pro Life, but I never understood the sacrifice involved in that proclamation until July 22, 2010.  That was the day (3 months to the day before her birthday!) that Abby was diagnosed with Pierre Robin's Sequence in utero.   It was also the day that we were first faced with the question of medical termination.  We very quickly said that we would take Abby any way that God would give her to us, and that we didn't want to discuss it anymore.  The doctor respected our wishes and never brought it up again.  At the time, I couldn't believe that he would suggest such a thing over something as minor as PRS.  It can seriously be nothing more than a small jaw, and there are often no other medical complications.  A child might h...

I learned about this case today, where a mother is suing her obstetrician and two ultrasound clinics for not detecting on the ultrasound that her son only had one arm and no legs.  Sounds legit, right?  It certainly is strange that seven ultrasounds wouldn't detect such obvious abnormalities.  Read on, my friends. What is so disturbing is this:  "Had she known, she said, she would have terminated the pregnancy rather than subject Bryan to what she believes will be a life of physical and psychological pain and untold  hardship" ( http://www.palmbeachpost.com/ ).  This lawsuit has caused a pretty major uproar across the country, and I first read about it while reading this blog post.   Many people have many opinions on the topic, and the comments section turned into a firey debate over the morality of medical termination. My feelings on the topic?  Well, first, let me avoid the medical termination thing for a few minutes and ...