Where's the Magic Wand when you need one?

I described myself as an "ordinary mom", but there's nothing too "ordinary" about my life.  A little background ...

In July of 2008 I gave birth to a beautiful little baby boy.  He is my second child and I remember being so worried about how I was going to be able to "love" two children.  I already had my miracle baby, my daughter, two years earlier and she consumed my heart and life.  But when my son was placed in my arms, it was just an amazing feeling.  He captured every part of my existence, I knew for some strange reason that I had to make sure I took extra special care of him.  Just hard to put a finger on it, I just knew.

He wasn't the best eater from day one and breast-feeding turned out to be "not an option" since he was failing to thrive and was needing supplimental formula feedings. So I just switched to formula.  I felt a bit of a failure but knew I wanted to make sure that he would thrive!  Even with the formula he would only take 2 oz at a time.  At one point, the doctors thought he had pyloric stenosis and was tested twice for via ultrasound - that fortunately was ruled out.  Eventually he was seen by a G/I specialist and she determined that he was just a "silent refluxer".  With a little Zantac, life seemed to be good, until his body got use to the Zantac.  Finally Prevacid was prescribed and that seemed to do the trick.  Since he was on meds the G/I specialist wanted to see him every 6 weeks.  When he was 5 months old, she heard a murmur when checking his heart.  She asked if anyone had mentioned a murmur to us?  No one had.  So off to the pediatrician we went, she confirmed the murmur and had us make an appointment, just as a matter of formality, to see a cardiologist.  Two weeks later on December 1st 2008, we found out that he not only had a congenital heart disorder, but he also had a "genetic disorder". 

I come to find out, all the little things I loved about him were "character" marks of his "genetic disorder". I also found that I looked at my son in a totally different way.  Like he wasn't "perfect" anymore and all those things I found cute, weren't really cute anymore.  It made me so sad.  It took me a lot of time to accept this diagnosis and to view my child in the eyes I viewed him under before his diagnosis. Today, I love those cute little "character marks", I truly do.  Its what makes him - HIM.  With Noonan Syndrome, the genetic disorder he has, a whole host of things can be a bit "off".  There was a chance that my son would have developmental delays.  We, my husband, son and I, have been lucky to only realize some "annoying" medical issues at this point - nothing earth shattering, and very manageable.  As far as developing, my son has met his milestones and is smart as a whip. He is a "normal" child, he looks and acts like a typical child of 2 years old.  Although, he might be a little small for his age.  We are stopped everywhere we go by people, telling us how cute and adorable he is - all these strangers really don't know how much it means to my husband and I to hear the sweet complimentary comments they share with us, because they don't know he has a "genetic disorder".   That's the way we like to keep things - to not segregate him from the rest of his peers, because there is no need.

However, we can't forget he has Noonan Syndrome because there are "medical" implications such as his pulmonary valvular stenosis.  He also started to decline in his "thriving" and pretty much has been eating limited "solid" foods.

Its the decline in his weight and his affinity for only "milk" that lead us to agree upon an endoscope procedure with biopsy hoping we could find a "medical" reason to why he doesn't want to eat.  The endscopy didn't conclude any "glaring" results of why he wasn't eating - but in the meantime, he suffered what is a very rare complication to the procedure.  A hematoma in the small bowel with a total blockage - which has stopped his ability to digest food beyond the stomach.  He wears an N/G tube to help eliminate the contents of his stomach - bile and other bodily secreted fluids pooling in his stomach.  He wears heart monitors on his chest to measure his heart rate.  He has a PICC line inserted into his vein that stops just shy of his heart to help nurish his body with IV nutrients.  With all this, he still can give me a smile, an occasional giggle, hug and kiss.  He is such the trooper.

So here is the point of my blog where I ask "Where is the Magic Wand?" - so I can make this situation for my son magically disappear, and make him feel all better, and place him safely in his Buzz Lightyear bed so he can rest peacefully at home tonight.