Monday, February 1, 2010

Danny the magnificent

First of all, let me say that this blog thing doesn't have a spell check or at least I can't find it, so if I misspell stuff just ignore it.  Ok? Thanks.
On with the show........
There are many things to tell about Danny but I suppose I will tell his story right from the beginning because if you are not familiar with the story then you might not fully appreciate all that Danny has done in his short life. 
Danny is my #6 child.   Every delivery prior to Danny's I had not had any outsiders  in the room with me at the time of birth, beside of course the doctors, nurses and my husband.  However, with Danny, it just so happened that Ron's mom and my mom were there, so they both got to see him being born.  It probably wasn't the delivery either had planned on watching.  When Daniel was born his heart stopped and he needed to be resuscitated and even after he was brought back he looked pretty purple.  I think the whole experience was one both mom's could have lived without seeing.  
While in the hospital the doctor could tell something wasn't right with Danny.  He definitely looked different but no one could put there finger on it.  Looking back now I have no idea how we couldn't pick up on the fact that he didn't blink or close his eyes.  Duh!   Oh well, that says a lot about how a mothers love looks past the obvious.  Two weeks after Danny was born, Ron and I noticed that Danny would seem to pass out if he was laid on his back in Ron's arms.  We took Daniel in to be checked and the doctor wanted to have him assessed for sleep apnea.  So we went to the hospital and did that and while we were there his heart rate when up to close to 200.   The idiot nurse and respiratory therapist asked Ron and I if we thought that was a normal heart rate for an infant.  We looked at each other like "what the heck?" and told them to call the doctor immediately.  After the doctor was called, she preformed a procedure called a 'vagal maneuver ' on Danny by placing a bag of ice over his little baby face until he his heart rate would convert to a normal rhythm.  It was one of the scariest moments of our lives.  The hospital immediately tried to get an IV in him which they could not do and so they called Strong Childrens Hospital in Rochester to have an Ambulance sent down to get him.  While we waited for the ambulance to get there we just rocked him and listened to the monitors hoping that they wouldn't start buzzing and signaling another episode.  After Strong got there to pick him up I was able to relax a little because they obviously knew what they were doing.  The team was able to get an IV in without any problems and we raced off to Rochester.
While we were in the Hospital in Rochester the team of Doctors were able to do lots of tests to see what other problems Daniel had.  We saw the Cardiologist,  Neurologist,  Geneticist, Audiologist, Ophthalmologist and probably other "ists" that I forgot about.  It was a whirlwind of doctors and tests and most days my head spun.  Not only was I hormonal due to giving birth two weeks prior, but I had 5 other kids at home and I knew they must be wondering what was going on.  
As it turned out, the doctors found that Daniel had a few extra nerves that hadn't disolved at birth like most kids and that is what caused his heart to race.  He was on Digoxin to keep his heart regular for 3 years.  The doctors also diagnosed him with Moebius Syndrome and Agenesis of the Corpus Collosum.   Feel free to Google those things, as it would take a long time to explain those.  Needless to say, Daniel still has many challenges.  Every day is a struggle for him to achieve what other kids his age or even younger can do easily.  Most days he takes on this challenge without problems but recently he has been markedly frustrated which makes me sad.  When I look at what Daniel has been through and what he goes through every day, I can understand to a tiny degree of  why he would get frustrated at his struggles.  However, I'm not the one who walks in his shoes and has to work hard at everything I try and usually still doesn't  measure up to the worlds standards.  All I can do is encourage him to do his best and make sure he grows up to be the best that he can be.  I know he will do fine because he has a determination that far surpasses the doctors expectations.

1 comment:

  1. You are such an encouragement to me. With all that you've been through with Danny and your spirit is always so high! And Danny, well, his strength is remarkable. :o)

    <3 You!!