I don't usually post in this forum--I leave the advice for the pro's here. I'll still follow my own instincts with that one, but I want to talk to you about your S1.
I'm a HD chick, so I'm in a different boat than your W. But there is something I'd like to share with you because hindsight is always 20-20.
The day my D6 was born was the day our lives changed irrevocably. She was born 3 weeks early--just shy of being termed preemie, but she was.
She weighed 6 lbs even and became very jaundiced from the get-go. The day after we brought her home, we got a visiting nurse and the suntan in a suitcase--along with diarrhea from hell and acid reflux like you wouldn't believe. She was readmitted to the hospital a week after she was born because he bottom was bloody from the acid level in her diarrhea.
That week began our descent into hell. I'd love to spend time rehashing that with you, but I'll give you a thumbnail sketch instead. At 3M, she went into the hospital again for bronchitis. We came home with a nebulizer. She got RSV over July 4th and came home with O2 a week later--and was on oxygen for the rest of the summer.
She still had the reflux all along and started to refuse to eat. In October 1997, we got a referral to a pediatric GI and discovered this baby had ulcers, esophagitis, a slow gastric empty and some other forgotten name for not closing the flap over the trachea so that she was refluxing from the top and bottom into her lungs. All on top of the GERD and now a referral to a pulmonologist. And she has been on meds since the day she was born.
In Dec she had her nissin--surgical procedure to prevent reflux--sort of like crimping a garden hose. And then she didn't eat because she had learned to associate food with pain. At one year, she failed every developmental milestone and we were sent to another pediatric specialist to evaluate her issues--because she weighed in at a whopping 14 lbs at 1 year.
Except for my H walking out on me a year ago, my daughter's early days were the hardest days of my life. Bar none.
It's a long story to a genetic diagnosis, but I want to tell you what happened behind the scenes.
My sex drive disappeared completely. My life was spinning out of control and I was concerned for both of my children, but paranoid that my youngest was going to die. And I had the specialists accusing me of doing something wrong because she was a failure to thrive kid. The world was caving in on me, and I was a mess.
I don't know where you are with your son right now because you didn't say. But the trauma of dealing with what she dealt with coming off the natal hormones is INCREDIBLE.
This woman needs some support--from you and professionally. I didn't seek it until last year (D was 5). It took me a year to process those emotions and figure out what I was feeling--as a person, as a mother and as a wife. They are all connected and she needs some help.
I've had the blessing of meeting many, many other parents like us. And all of them have shared this same scenario, so I know what I'm talking about here. It's not abnormal.
I'll hand this baton over to others who can help you with your issues.
Big hugs.
Underdog
"There are only 2 ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle."
