Monday, October 7, 2013

It's Been a Couple of Years...WOOPS!

The past couple of years are been a BIG change in my life.  I believe in my last post (over 2 years ago) I announced that we were expecting baby #2.  Well, Baby #2 is 22 months old! 

Lucas Gail Melvin was born by C-section on November 21, 2012.  He was breach (very uncomfortable!!).  He was 7 pounds 6 ounces, and 21 inches long.  He appeared to be a pretty healthy baby boy.  Over the next few days and weeks we noticed little things about him that caused us to worry.  When we were still in the hospital we were told that he had an inguinal hernia and would require surgery at 6 months of age.  We also noticed A LOT of projectile vomiting.  The nurses assured me that he was just spitting up, but I knew better.  I felt like they didn't listen to be.  He just cried, cried, and cried.  When I would ask for them to keep him for awhile because I was tired and sore I was made to feel like a terrible mother.  The doctor ended up keeping us an extra day because eh vomited all over the head OB nurse right before we left.  They figured out that he had terrible acid reflux and we started medicine.  He also had a couple bent toes, an ear that was kind of bent over, some plates in his head were also over lapped.  When he was about a week old I noticed that his right pupil wasn't shaped correctly.  We went to his doctor who informed us that he could see normally and not to worry.  He continues to struggle though his crying non stop and "spitting up" AL THE TIME!!  Every time we asked the doctor about trying different acid reflux meds, he said that it wouldn't work.  We'd just have to wait until his tummy muscles got stronger.  FYI - That turns out to be the other thing the doctor was right about.  By the time he was 6 months old the over lapped plates were fixed due to some manipulation, spitting up was still terrible, his ear was a little better, we thought he could see in his right eye, toes would never change, and we were preparing for the hernia surgery.  By this time his 1 inguinal hernia and turned into 2.  In May of 2012 we asked the doctor about the surgery and he said that thought we should wait until he was a year old.  I asked if we could go ahead and see the surgeon anyway because I really wanted to have it done over the summer vacation.  We were in Columbia the first week of June.  Dr. Ramachandran (pediatric surgeon) made us feel really bad because he said that Lucas's hernia's were some of the biggest that he'd even seen.  He thought we should have had then repaired right away.  The next week, he was having surgery.  During the surgery, Dr. Ram discovered that Lucas tummy muscles were actually 2 separate muscles instead of being attached.  That explained a lot to us.  At the post op visit a couple weeks later he asked us if we had ever considered having genetic testing done on Lucas.  We actually weren't sure what that was.  After he talked to us about it we decided to go ahead and see if there was anything wrong.  It took a couple months to figure out how we were going to pay for this testing.  Our part would have been around $3000 with insurance!!  We ended up finding the "Children and Youth with Special Needs Program" and qualified for that.  That program was a God sent during that time for us.  Around October of 2012 we received "the call" and were told that Lucas had a thyroid issue and a syndrome called Recombinant Number 4 (I'm probably spelling that wrong).  Basically each set of chromosomes is a pair.  One side is short and one side is long.  On Lucas's fourth set of chromosomes, his short side is too long, and his long side is too short.  So he has some extra information and is missing some.  He has some of the same qualities as other children with this disability: bend toes, coloboma of the eye, delayed muscular strength, delayed speech development, and the thyroid.  Some other kids had much worse effects of the disorder.  We feel lucky to know what is wrong with him and how we can help him.  We also feel fortunate that the situation could be so much worse than it is.  He is really delayed with his muscles and speech.  However, he eats well, is very happy, and you can tell that he loves us.    He is such a "mommy's boy" and I love it.  He eventually will develop into a "normal" child.  Until then, I will love that my baby is staying a "baby" a lot longer that most kids.