- ginny m.
- Wife to Sean, police officer and carpenter. Mom to Maeve, 5 year old fashionista who happens to have an extra chromosome. And 1 year old Michael, future Steeler and ladies man. This is my attempt to share the behind the scenes of a real housewife who idolizes Martha Stewart, follows in the family footsteps in the art of sewing, navigates the world of special needs and tries to keep her head above water.
Tuesday, January 12, 2010
Paging Dr. Maeve
Aaawww, our little Dr. Maeve! Pretty cute huh? You would think a kid who sees as many doctors as she does, would not want to play "Dr", but she loves to! She puts on her white coat and stethoscope, grabs her light and shoves it in your face and says "aaaaaahhhhh."
Honey, the patient is suppose to say that.
So, I don't plan on always writing about Down syndrome, but I guess it kind of comes up today in a round about way. Why? Because we are scheduled for surgery number 10 tomorrow - 10 in 3 years. And although they have been for things any kid can have, kids with Down syndrome seem to hit the lottery and get them all!
10 surgeries - Seems like a lot, huh? I know there are families who have dealt with more than that, but it's a lot for us. Too many personally.
They are doing biopsies for hirschprungs and then they are repairing her abdominal scar from her very first surgery at birth. Seems those dissolvable stitches didn't dissolve and the incision has holes in it and they keep getting infected. Started happening before her 2nd birthday. Called the surgeon and you know what they told me, "put warm compresses on it."
I very politely asked them if they were coming over to sit on my child to do this and prescribe drugs and ear plugs for me and the neighborhood. Anyone who knows Maeve, knows she does not sit still - ever. Even with chips, Pepsi and Caillou on the TV, she is always wiggling about.
So she is now three and the problem persists. It's all minor , but Maeve has a floppy airway, tracheamalacia, and has to be fully sedated with a little breathing tube in her airway. So it becomes a little more complicated.
No wonder I am going gray, much more so than I ever use to be.
And the fun doesn't stop there. Thursday she has a Ct scan of her sinuses scheduled and then a visit with the ENT. She has been battling sinus infections since a little over the age of 1, and they keep getting worse. They wanted to wait until she got a little older and hope that she would "grow" into them, before doing anything drastic.
So they will take a look, and if they are still tiny, they are planning on going in and making them bigger. Not sure how you do that, not sure I won't to know either. Sounds really painful, I know that. Thats the "drastic" part.
So, I'll be taking bets on whether number 11 is in the cards... hopefully not, but we aren't that lucky. If we were, we would have won the Powerball months ago.