Oh Danny Boy!

Wow, it feels like a long time since my last post.   Time does not stand still around this house, I can tell you for sure.  The other day on my way back from Slayt's doctors appointment in Rochester, I was thinking that I had never told Danny's story on here.   So, guess what?  Here goes...........

January 8, 2002 I gave birth to a still born baby; his name is Daniel William Norman.  The doctors were all rushing around and the look on everyone's face told the story.  I knew the story wasn't good, but I prayed it would have a happy ending.  I think Ron finally told me that he was breathing and after that I don't remember a whole lot, until the following morning.  
Our Pediatrician came in the do his rounds and check on our little miracle the following day.  I knew something was up, but I wasn't sure what.  The doctor asked me if he looked like our other kids.    Gosh, what a funny thing to ask a mother still half strung out on all the pain meds...... In my head all I could think was that he was implying he wasn't actually both Ron's and mine.  Indignantly I said, "of course he does", however, in my heart I knew he didn't.  There was something different about Danny.  I just couldn't put my finger on it at the time.   My mother-in-law thought it might be because he was so swollen from the delivery so I thought she was right.  When it came time to nurse, Danny was so lethargic that I pretty much had to strip him down every time just to get him awake enough to eat.  Another oddity that somehow I didn't catch onto in the hospital was that it was more difficult for him to latch on.  I thought that was weird considering I hadn't had a problem with my other 5 kids... but after much practice and holding his mouth just right, we got him to nurse ok.  Not great, but enough. Looking back now, I think having large boobs that squirt milk like a fountain was a good thing in Danny's case.
Before we left the hospital, I think I had started to worry that Danny had Downs Syndrome.  He just had a funny look about him and that is the only thing I could think of.  It wouldn't be long before we had a few answers. I can't remember exactly the order of events, but I know at the one week appointment for Danny, the Pediatrician said they needed him to have some genetic work done.  He never gave me his thoughts on that but I just went with it.  I knew something was different, but I didn't know what so I just trusted his opinion.  In the meantime, my MIL contacted a friend who she knew who knew a pediatrician in Corning.  So when Danny was 3 weeks old we went to get a second opinion.  We just wanted answers.   We were silly to think that ANY answers were better than no answers at all..... 
At the appointment with the new doc, we felt like even though he couldn't put a name on Danny's problem, we at least were getting somewhere.  It may sound strange, but at this appointment we first figured out that Danny wasn't blinking.   I think we knew that he wasn't closing his eyes but we never even realized that he wasn't blinking.   I think it was at that appointment that our brains started to make the connection that Danny wasn't like the other kids at home.  He didn't do anything.  He didn't coo, he didn't move, he didn't smile, he didn't cry, he didn't do ANYTHING.  It was like having a shell of a baby that stared of into space.  I began to be fearful.  Right about that same time, within a day or two Ron and I noticed that everytime he would lay Danny on his arm and lay him on his back he would go limp and look like he fell asleep.  I took Danny into see our regular Ped. and he wanted him admitted to check for sleep apnea. So off to the St. James we went.  Good Lord!  If I didn't know then that they are complete idiots at that hospital, I sure do now.  
We got settled in our room and they laid him on a bassinet with an alarm that would go off if he stopped breathing.  It also picks up the heart rate and thank God for that!  He hadn't been laying on that silly thing for more than 5 minutes and the alarm started to go off.  The respiratory therapist came in and pushed some buttons and  the alarm stopped.  Another 5 minutes passed and the alarm started going.  So this time the nurse came in and checked some things and pushed some more buttons and the alarm stopped.   5 minutes later the alarm goes off again, this time the nurse AND therapist come in and notice the heart monitor.  I think by that time Danny's heart rate was up to 190 and climbing fast.  By the time it was over 200 the nurse turned to us and said "Do you think that's normal?".   I was like, um that's YOUR job to know if it's normal or not. 
The doctor was paged and they rushed Dan down to the ER.   I was freaking out by then.  When the doctor came in, she had to do a maneuver to stop his heart and make it start beating in a normal rhythm again so they made us wait out in the hall........  that was the longest 5 or 10 minutes of my life. 
After the doctors got his heart back to "normal" they let us come back in.  My poor little guy was hooked up to monitors, IV's, all sorts of stuff.  I kept watching the heart monitor like it was a huge monster ready to devour my innocent little one at any moment.  Each time Danny's heart rate would start to creep up, I'd panic.  In the meantime, the decision was made to had Dan taken to Strong Children's Hospital in Rochester but we had to wait for a team to be assembled from Strong and come down to get him.  It took about 3 hours for them to get there.  When the doctors and nurses from Strong got there I relaxed a tiny bit.  By that time it was midnight and I was mentally and physically exhausted!  Thankfully they let me ride in the ambulance with my baby and we hopped in and off we went with sirens and lights blazing. 
We were in Strong for a week.  While we were there Danny was seen by every IST you can imagine.  He saw the Geneticist, the Cardiologist, the Ophthalmologist, the Neurologist the Audiologist, and who knows who else.   Some of the tests they did were so painful to watch and I just couldn't.  They had to take blood from his carotid artery which sounded and was REALLY scary.  They hooked him up to wires, IV's, monitors, etc.   The one test they did was an MRI and so they wisked him away and said we could wait in his room.  Well, what they didn't tell us is that it would take a long time.  After about an hour I started to panic.  I started looking all over the hospital for him.  I know, that sounds like a fruity thing to do, but at 3 weeks post delivery, I was raging all kinds of hormonal freakiness..... so I didn't care. Just about the only thing the doctors could tell us, was that Danny had an extra set of "wires" that had not dissolved at birth like normally happens and that was the reason for his heart rate.  So his first diagnosis was SVT.  Supra-ventricular Tachycardia to be exact.  They gave him Digoxin through his IV but at home I would have to give it to him three times a day at the same time every day by mouth.  In my head I'm thinking, oh my gosh! I'm not going to be able to do this, I can't even remember to give the kids their antibiotics everyday, let alone a medication that keeps my son's heart from freaking out.  By God's grace, I managed to do it though.  I got myself on a schedule and it wasn't to hard.  But I"m gettting ahead of myself......   While we were still at the hospital, the doctors also gave us a tenative diagnosis of Moebius Syndrome and after the MRI they added a third diagnosis of Agenesis of the Corpus Collosum. 
Moebius Syndrome is a rare disorder that affects the cranial nerves and also many things midline on the body.  Most kids with this condition can't suck, blink, close their eyes or have any facial expression.  At least Danny could nurse, so I felt like we were ahead of the pack in some ways......   The diagnosis of complete ACC was harder to grasp for me.  All I could think was that he was missing a very important part of his brain.  With both diagnosis the doctors couldn't and CAN'T predict what the future will hold.  Some kids do ok, others don't.  So far, Danny falls somewhere in between the two.  The third diagnosis was the heart problem but that was the least of their worries and really mine.  Even though it was stressful, I at least knew what I had to do  to make it ok.  With the other two it was and still is a waiting game.  Let me tell you, patience and waiting to see what happens is NOT my strong area!
8 years have passed since that week in Strong.  Since then we have made another week long trip to Strong when Danny had Pneumonia and many other day trips to see specialist.   At the age of four, Danny was able to be weaned off the Digoxin for his heart and we see the Cardiologist only once every few years unless there is a problem.  He still has chest pain at times but so far they can't find the cause.  They think it might be a virus that makes the chest wall hurt and not actually his heart.  The doctors at Strong have gotten to know Danny and it almost feels like a second home in some ways.  Danny's pediatrician here in Hornell has taken a strong liking to him and makes sure he tells Danny's story to all the student nurses that train in his office.  If we are there he brings them in to meet Danny and each time introduces Danny as his 'special friend'.   It's nice to know that Dr. Virdee cares so much for him.  Dr. Virdee and I also have an understanding from now on that if Danny ever gets admitted to the hospital again, it will NOT be at St. James.  I'm not dealing with incompetent nurses that expect me to know more than they do, which isn't to hard.
Danny see's the Ophthalmologist in Elmira and Dr. Morello is THE BEST!  Dr. M has done four surgeries on Danny's eyes and is wonderful with him.
For the most part, Danny is a happy and relatively healthy boy.  We have our up and down days and his   Autistic tendencies are present and show their ugly head at times.   We make frequent trips to the doctor it seems but I guess that has just become normal for us.  Even though Danny is 8 1/2 he is still at about a 6 year old level on most things.  He is at a 7 year level on a couple things but there are some places he only is at 5 year old.......  some days it makes me sad but all he has to do is give me his funny little "smile" and all my fears disappear.